Newly Diagnosed and starting Cytoxan/Preds/Bactrum today

[HopeinTN]

I'm interested in knowing more about side effects from anyone out there that has been on this same treatment. Just let me know what to expect good or bad. I'm scared but will never admit that to anyone outside of this group.

Thanks!

[Brooke]

Welcome to the group.. I have only been on Rituxan, Pred and bactrim.. no side effects for me.. except when I was on steroids.. weight gain, anxiety, moodiness.
Others will be able to help you with their experience with Cytoxan.

[Dryhill]

Hi HopeinTN,

Firstly welcome to the Forum and a special welcome to our very exclusive disease (I keep more or less sane by trying to keep a sense of humour). Secondly you have every reason to be scared, but do not keep it to yourself, DO let others help you.

I was diagnosed with WG just before Christmas 2010 although it is clear that it started some two to three years prior to that. Whilst I am not yet in remission I definately feel a lot better and am sure that I will be in remission by early next year.

I receive one gramme Cytoxan/Cyclophosphamide by infusion every three weeks. I started out at two weekly intervals but when my consultant originally moved me to a three weekly cycle I immediately got worse again. So we started all over again, but this time when I went to three week intervals I started taking 20mg Methotrexate once a week. I am having chemo tomorrow (Thursday 27th) and am hoping that I will be told that in future I am on a four week cycle. I am also on 15mg of Prednisolone.

Now as to the side effects:-

CYTOXAN/CYCLOPHOSPHAMIDE:
1. It can in long term usage cause cancer.
2. It can also damage the bladder and kidneys - I am given an infusion of Mesna plus two tablets to take that day and advised to drink five or
six litres of liquid for the next two or three days.
3. It will make you INCREDIBLY tired (normally starts about 15 hours after infusion and lasts for upto three days) - I quickly learnt when sitting
not to hold a drink in my hand for too long, it seems that when you go to sleep the glass/cup/mug does not always stay verticle and so the
drink finishes all over you! My neighbours thought it very funny that I fell alseep in mid sentence. If there is something you really must see on
tv RECORD IT!

PREDNISOLONE:
1. Just accept you are going to put weight on!
2. It can cause bones to thin. I was automatically put on a daily dose ofADCAL/NATCAL which is calcium and vitamin D3. After a bone scan they
decided I needed to take 70mg ALENDRONIC ACID once a week.
3. Some complain of mood swings.

The main thing to remember Cytoxan is an immune suppressant so when taking it you will be like someone with HIV, in other words at risk of infection from others. All my family and friends know not to visit me (or warn me if I am visiting them) if they have any nasty bugs. I am a taxi driver and sit in a car with passengers who may be ill but so far I have been lucky. Mind you I do use a hand sanitizer after I have handled the money.

Well I hope I have not frightened you too much, if you have any more problems/queries do not hesitate to post a question.

[NicShaf]

Hi HopeinTN,
Welcome to the group! I was diagnosed the same time as Dryhill, coming up on a year! I understand how you feel about not wanting to let everyone know how scared you are. And that is what this group is for. We all understand what you're going through first hand.

First, are you on Oral Cytoxan or infusions? How much Pred are you on? What areas did Wegs affect for you? Sorry if you already went over this in another post, I haven’t been on in a while, trying to catch up.

I started Oral Cytoxan last January, the first two weeks were at 100mg, then after they could see I wasn't having a reaction, they bumped me up to 150mg. I was on the full dose of 150mg until July when I was downgraded back to 100mg. I'm currently at 50mg and hoping to start Immuran at the beginning of December.
My experience with Cytoxan has been Ok I guess. I did make me tired and worn out. but I've been able to work full time since diagnosis...I'm 27 years old if that helps put it into perspective. Other than feeling tired, I didn't notice anything else. Since you have to drink TONS of water, I pee all the time...I joke with my counterpart that my office should be moved into the restroom to save me time:) At the beginning of my treatment, I would nap on my lunch hour to make it through the day, that probably lasted for 8-10 weeks.
The Prednisone is a different story. There are many side effects. I experienced:
Weight gain
insomnia
mood swings
acid reflux
acne
some random facial hair (and I'm a woman)
Those are the ones that come to mind now. But once I got down to 20mg, most went away. The weight is the one that is sticking around the longest. I was started at 60mg in the hospital in mid December 2010. Now I'm at 3mg.

I haven't noticed anything with Bactrim...it’s just another pill I take:)

Hope this is helpful. Best wishes to you for a speedy recovery and long term remission!

[NicShaf]

I saw your other post about your situation. I had similar nodules in my lung at the time of diagnosis. Hope you start feeling better with the meds soon! keep us posted.

[HopeinTN]

Thanks so much for the info. Mine is only in my lungs and after a rt middle lung lobectomy and several doctors telling me it wasn't Wegeners, I was diagnosed by my new doctors at Vandy. They are so amazing.

As for the Cytoxan, it was originally set for 1 infussion per month and see how that goes, but yesterday my doc decided to change to 1 pill every day. I started prednisone and bactrim today and waiting to start the cytoxan first thing in the am. This is great info and I know I'm going to be ok and not alone.

Only good things ahead, after a few bumps in the road of course.

I can't thank you all enough!

[HopeinTN]

Dryhill- 5 or 6 liters every day for a few days? OMG. I was thinking around a gallon a day. While at wotk today I drank 2 liters (8.5 hours) and can drink a few more glass tonight. Will that suffice. I think all the water is giving back and leg aches.

Thanks again!

[aewaustin]

Katrina,

Welcome to our little club that we would rather not belong to :) Someone mentioned above to not hold back from your friends about how scared you are, and I totally agree, you will need a local support group. But I have found as much as I want my local support to understand, they just can't and so that is what I get from this group. That said my local friends do want to help and be supportive and I learned that i need to help them be able to do that. This whole thing is such a learning experience...

So I am doing CTX for my second time, the first time was 19 years ago and it knocked the Wegs into remission for a good long time. I started CTX again on August first so this is all very recent for me. One thing I HIGHLY suggest is keeping a journal of what medicines you are on and how you are feeling, this has proved very valuable for me. So I am about 135 pounds and I started CTX at 125 mg. You will want to see what kind of dose you are on in relation to others to compare experiences. I am now about three months in and unfortunately I have lost about 1/2 my hair, my hair was really thick to start with and it is now very thin, and that is one of the worst parts... But I think I am on the crappy end of that spectrum and I think I lose more than most. From weeks 1-4 of CTX it was not great but it was not horrible, but weeks 4-7 were just miserable and I needed friends to get food for me and I could not drive or work, then week 8-9 was better and 10-now I am almost normal. This week I rejoined the gym and went to spin class three times... If you get nausea then I recommend ginger tea http://www.amazon.com/Yogi-Ginger-Herbal-Supplement-16-Count/dp/B0009F3SD2/ref=sr_1_2?ie=UTF8&qid=1319755385&sr=8-2 this worked so much better than the drugs for me. I know that is all very random, but just wanted to share quickly as I have to get back to work for a bit :)

Feel free to message me if you have other questions. You may see posts on here from me from two months ago and I was desperate to hear what to expect so I would like to return the favor to you :)

One thing that I realized this time was that I would have been totally freaking out if it had been my first go round, know that it is rough and it sucks, but things WILL get better. I keep telling myself that this too will pass...

Best of luck!!!!!!

Anna

[HopeinTN]

I have great friends here and back home that are awesome, but it's hard to get to the point to ask. I'm hoping I don't have to ask and it's a rare case of not so bad. If I need them, I promise to ask. Since no one really understands or has ever heard about this disease, they look at me like I have three eyes. Some don't seem to understand how serious it can be/is, and that's hard to swallow at times.

I have crazy think naturally curly hair, so I guess I could use a good thining out if that happens. I also have a friend going thru chemo for breast cancer and she just lost her hair. I told her if it got bad I'd shave it so she wouldn't be alone.

I'm drinking so much water that I think it's causing my back to ache. I have to stay on top of this water thing and not let up. I've had bladder and urinary problems my whole life and that could get ugly quick. I appreciate the honesty. I want to know the good, the bad and the ugly, and pray for the good end of that.

My work is amazing and with my total of 4 hospital stays(1-found spots in for 5 days, 2-lobectomy in for 7 days, 3-kidney infection in for 3 days and 4-brain toxcity from MAC infection meds which I didn't even have) I was able to work remotely and this time will be no different. Very lucky

Anna, I hope you have another long remission and you get there quickly. Thanks for the good info.

[aewaustin]

I can totally relate to not wanting to ask for help. When I finally did have to ask for help, because I needed food, I was crying so hard it was hard for them to understand me. Have never really had to ask for help before and it was crazy how hard it was. I am super independent, to a fault maybe...

[Sangye]

Dryhill- 5 or 6 liters every day for a few days? OMG. I was thinking around a gallon a day. While at wotk today I drank 2 liters (8.5 hours) and can drink a few more glass tonight. Will that suffice. I think all the water is giving back and leg aches.

Thanks again!
You should not drink 5-6 liters of water a day. That is way too much. You can harm yourself with too much water--diluting electrolytes, medications and causing water intoxication, which is deadly.

[HopeinTN]

Whew...I was thinking there was no way I could drink that much. I'm drinking 2 liters during the day at my desk and a couple more glasses thru the night. I think that should be enough. So far so good. Thanks again!

[Thakator]

Hi Katrina,
Just a few comments to add to those of the others you have received in response to your opening note. To help counteract Cytox's potentially serious side effects upon the bladder, please ask your doctor about taking Mesna along with it (check out the post entitled Cytox and Mesna http://www.wegeners-granulomatosis.com/forum/medication/1352-cytox-mesna.html?highlight=mesna). I was on 200mg/day oral cytox and 75ml/day Mesna for six months - - with no bladder problems, at least none that have yet to appear. Had plenty of gastro/intestinal pain each day, but no bladder problems. As for the increased water consumption, I was told to shoot for 2-3 quarts/day. Continual tiredness as others have mentioned and lost most of my hair (but it has come back, albeit fully curly whereas I've never had any curly hair before). It's also my understanding that the oral method is more effective than the IV.

Was on Bactrim while on Cytox and you should be as well; it's to help prevent lung infections which are more prevalent while taking the Cytox. I'm now on MTX (22.5 mg/week) with an Rx of folic acid to help counter it's side effects - - no Bactrim. Started out at 90mg/day of Prednisone and now down to 10mg. My Wegs is also primarily in the lungs and I had one of those open-lung biopsies with a wedge resection similar to your edxperience. That was a year ago and there is still considerable post-op pain (which is quite typical); so, if your lung still hurts, its probably that.

Best of luck, Katrina, and welcome to the family. Ron

[NicShaf]

I second the keeping a journal suggestion. It is extremely helpful down the line, as you start to lower medications to try and decipher Wegs activity from Medication & side effects.

[Dryhill]

My fault I did say liquid and should have explained that I have electrolytes to add to the water. In my case I have been on Cytox for much longer than is normal, or particularly safe. I had chemo on Thursday morning and am now easing back on the liquid intake (thank goodness, I spend sooooooooo much time in the loo!).

[Al]

Katrina-we are all scared little bunnies here, but the important thing is that you don't have to do it alone! You are among friends who have walked, and continue to walk, the same paths. Every therapeutic course comes with "side effects". But it is also true that the effects can vary from what the book says. I am one of the small percentage of prednisone users who lost weight. It did make my dreams wilder, longer-formed, and even more violent. I also got shaky fingers, weird cramps, and cataracts. I try to minimize the bone density loss by walking a lot and lifting weights regularly. The only CTX I had was intravenous, and it blasted my taste buds. Oh, and pulled out a bunch of hair. Then again, I was follicly challenged already....

One "side effect" that you note is that most people do not understand what the ailment is all about. Yeah, this is a real phenomenon--but not on this forum!

Al

[HopeinTN]

Thanks for the info on Mesna and I'll run it by my doc. As of today the only real difference I notice is that my legs ache and I'm having trouble sleeping. Not enough to worry about yet but on the radar. I think I'm sticking to the 3 qts per day.

Is there a normal time frame from first dose to side effects? Does it take some time to get through the body? I picked up on the prednisone effects pretty quickly after I cleaned the entire house, dog and changed a door knob (not to mention that while I was changing the knob I locked myself inside a very small bathroom- the knob wasn't on yet so I couldn't just unlock it. I was alone and 45 minutes later I got out thanks to someone leaving a bobby pin under the sink). Oh the thoughts that were racing in my head.

Yes, I'm still having a few sharp pains in my chest from the lobectomy and wedge, but I'm hoping they will subside in short time. I still have pain when I yawn odlly enough.

It is kind of weird that when I explain to friends about the chem drug I'm on (cytoxan) they look at me and say but you don't have cancer. Or they say, don't worry about it, it's not the same dose as a cancer patient would get. I'm not sure why they would ever say anything like that when I'm so scared. No matter the disease, if you are taking a chemo drug abd lost 1/2 of your lung...it's serious.

I can't thank you guys enough. Finding this site was a blessing. I know we are all in it together and for that I'm glad I have you all.

Have a great night and a Happy Halloween!

[Al]

Thanks for the info on Mesna and I'll run it by my doc. As of today the only real difference I notice is that my legs ache and I'm having trouble sleeping. Not enough to worry about yet but on the radar. I think I'm sticking to the 3 qts per day....I can't thank you guys enough. Finding this site was a blessing. I know we are all in it together and for that I'm glad I have you all....Have a great night and a Happy Halloween!

Katrina, About those achy legs: Do you have any puffiness around the ankles or feet? If so, you could be retaining water. Any edema should be noted and reported. And mesna is very important to use with CTX. And have a fun Halloween yourself! It's a lot more fun to play with costumes than to be scared to death of those nasty drugs, isn't it?

Al

[aewaustin]

Katrina,

Sorry about the reactions from your friends, I can totally relate, they just have a hard time understanding. Wegs used to be fatal until 1970 when they started using Cytoxan to treat it, so this is not a disease to take lightly. I started sending some of my friends this link Wegener's granulomatosis - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Wegener%27s_granulomatosis) so they have a better idea of what Weg's is. Honestly I am still working on how to tell folks, my friends really got it when they had to help me in the 2 1/2 weeks when I was so weak, I looked really bad.

So for me the first month on Cytoxan was a bit hard, but when it got really bad was when one month hit and the drug had reached full potency, and the next 2 1/2 weeks were really hard. I would be laying on the couch and get lightheaded, was so weak. But after I made it to the two month mark things are almost normal now. I am a runner and I started walking after 2 months and even got a seven mile walk in and now I am back to spin classes, but seems I have already injured myself because of how long I was inactive so have to be careful on how quickly you get active.

Just know you are not going to get hit with CTX all at once, it has to build in your system for a month until it gets fully active. My hair started falling out at 3 1/2 weeks, it sucks, hopefully you won't have as much of that, but it was the same for me both times and I now have to wear a hat or headband when I go out.

Good luck!

Anna

[HopeinTN]

No swelling in the ankles or legs yet but thanks for that info. I'll keep an eye on that and check them again at the end of the day.

Thanks for the link too, I'll share that with my friends. At least I know what the worst case is if/when I notice symptoms, and that's what I was looking for, as well as a time frame. I have very think natually curly hair, so if I lose a bit of it, I have some to spare. If it all goes, then oh well It's the perfect time of year for hats. I always wanted to be a red head.

Thanks again and Happy Halloween!

[Chadwyck]

HopeinTN, I would love to tell you what to expect. However, I was told by many of my doctors that if I ever run into other Wegener's patients, DO NOT compare myself to another because it affects us all differently. So I will only suggest, do what the doctor tells you. Last week, my family doctor was stunned when he found out I need a hip replacement because of prednisone usage. He told me that it usually takes a couple years of being on it consistently for that to happen. Also, out of his 45-50 years of medical practice I'm the second person he has with Wegener's. He told me that most family doctors in all their years of experience never ever run into a Wegener's patient. The emergency room in my area normally goes through approximately 5000 patients per month. Look at the outcome:

Wegener's affects 1 in 30,000 to 1 in 50,000 people.
Emergency Room 5000
Summary, in one month we're the only Wegener's patients to walk into the emergency room in a 5-10 month period.

[HopeinTN]

Yes, I would agree that we all react differently. I was mostly interested in the vast array of side effects in case that I encountered them I wouldn't be scared. Expect the best, but always be prepared. I'm sorry about the hip replacement and I know that's no fun at all, but I wish you a very speedy recovery. Odd stats to be included in but I surely get that. I guess we are evry special souls indeed.

Thanks so much!

[pberggren1]

Actually Wegs is more like 1 in 5,000.

[Al]

Actually Wegs is more like 1 in 5,000.

It's hard to know what numbers to believe. I was told 1 in 20K to 1 in 40 K. But I would wager that if all the sufferers of ANCA related diseases were added up, including those still to be diagnosed, the number would be a lot higher.

Al

[HopeinTN]

Just glad to know I'm among good company and not in it alone.

[Sangye]

Actually Wegs is more like 1 in 5,000.
Where did you get that number, Phil? I've never seen anything close to that published.

[RudiK]

My doc told me that in the US the estimate is 30 WG patients per 1 million people. Here in El Paso/TX we supposedly have 15 known WG patients out of about 600,000 residents.

[pberggren1]

Where did you get that number, Phil? I've never seen anything close to that published.

My doc told me this as well as some others like Hoffman and Specks.

[Stephanie78]

My husband has been on Cytoxan (Via IV as well as Oral) Rituxan, Prednisone, Bactrum and a pharmacy full of other meds.
We are not sure which medicine caused what because he was on them all at one time. He lost a lot of his hair and now that it is growing back it is a lot thinner then it was before (Drs state that was from the CTX) He had a reaction to the Bactrum. Shortly after taking it his face turned bright red. His eye lids swelled almost shut and his lips look like they were blistered (In a matter of 15 minutes) Luckily he was in the hospital at the time and they were able to give him a shot of benedryl immediatley. Now he has a HUGE sticker on his charts that state he is allergic to Sulfa Drugs.
Prednisone... The ONLY issues was when tapering. He had a lot of muscle/joint soreness during the tapering process. Most people will say that they had a HUGE appetite and they gained a lot of weight. My husband lost over 80lbs. He has since put back on 5lbs. The dr said that his disease was so bad that his body fought hard trying to keep up which caused his metabolism to be super high!
The one thing I would suggest is.. If you ever feel something is wrong call your doctor ASAP. Rather it is after or before taking meds. This disease can take such a quick turn. I felt like my head was spinning for months with the changes in Johns health (he is 36).
Good Luck and keep us updated on how things are going and how the disease reacts to the medicines.

[Stephanie78]

As for the 1 in 5000. That number was given to us from a study with the Vasculitis foundation. It is actually being diagnosed more often now then ever before. However I do believe (According to the person talking to us) was that some of this was "believed to be the situation". Meaning some doctors are not educated on WG and they believe more patients have the disease HOWEVER they are NOT correctly diagnosed for it. So the 1 in 5000 could be a speculation on how many they "believe" have the disease.
But I too have heard that number on several occasions when the drs were talking with us.

[pberggren1]

There are at least 4 Weggies right in my City with a population of 17,000.

[Al]

It is true that there are, for unknown reasons, clusters. My cousin lives in a small town in North Carolina, population about 5K. She personally knows of four cases there. What I am wondering is whether some of this has to do with awareness of diagnosticians. In some areas, doctors have never heard of the disease, so wouldn't ever diagnose it. In others, perhaps it is overdiagnosed.

[Stephanie78]

It is true that there are, for unknown reasons, clusters. My cousin lives in a small town in North Carolina, population about 5K. She personally knows of four cases there. What I am wondering is whether some of this has to do with awareness of diagnosticians. In some areas, doctors have never heard of the disease, so wouldn't ever diagnose it. In others, perhaps it is overdiagnosed..

Where at in NC? We are in Wilmington (right on the coast).

I have a lot of people say "Oh My goodness I know someone who has the exact same thing" however come to find out they have something else paired with "granulomatosis". That's all they hear for some reason.

When we took John to our local ER (his ENT had already DX him) we told them he had WG. They REFUSED to acknowledge that. They DX him with diverticulitis. 2 days later he was at UNC in ICU due to how sick he was.

[delorisdoe]

I am the only wegeners patient for miles and miles. I am sure of it.

[Al]

.

Where at in NC? We are in Wilmington (right on the coast).

I have a lot of people say "Oh My goodness I know someone who has the exact same thing" however come to find out they have something else paired with "granulomatosis". That's all they hear for some reason.

Mt. Gilead, in Montgomery County. The only time I've visited Wilmington was after some hurricane--Donna, I think. The beach was a mess. Must be better now! Don't know about medical practices there, but Chapel Hill is a hub of state-of-the-art knowledge about ANCA disease.

Al

[Stephanie78]

Mt. Gilead, in Montgomery County. The only time I've visited Wilmington was after some hurricane--Donna, I think. The beach was a mess. Must be better now! Don't know about medical practices there, but Chapel Hill is a hub of state-of-the-art knowledge about ANCA disease.

Al

We travel to Chapel Hill. Love the Wilmington Area (that's where I was raised) but the doctors lack A LOT! John see's Dr Ron Falk who is a WG "know it all" (as well call it).
Maybe Hurricane Diana (84)? That was a rough one!

[Al]

As for the 1 in 5000. That number was given to us from a study with the Vasculitis foundation. It is actually being diagnosed more often now then ever before. However I do believe (According to the person talking to us) was that some of this was "believed to be the situation". Meaning some doctors are not educated on WG and they believe more patients have the disease HOWEVER they are NOT correctly diagnosed for it. So the 1 in 5000 could be a speculation on how many they "believe" have the disease.
But I too have heard that number on several occasions when the drs were talking with us.

Not sure, but I think this number probably includes other (non-ANCA) forms of vascultis as well. Still, your point is a good one: no one knows for sure how to diagnose this thing.

Al

[Al]

We travel to Chapel Hill. Love the Wilmington Area (that's where I was raised) but the doctors lack A LOT! John see's Dr Ron Falk who is a WG "know it all" (as well call it).
Maybe Hurricane Diana (84)? That was a rough one!

Actually, I think it was the earlier Diane. 1955 (I'm an ancient guy now, but 7 years old at the time). Dr. Falk is the Big Man for sure.

Al

[Stephanie78]

Ummm (clearing throat) I wasn't around then, so it could have been a "Donna".
Dr. Falk is an amazing man!

[HopeinTN]

I know it's prety rare and I'll add that to my list of questions to the doc on my next visit. As far as hurricanes go, all I know is that mine "Katrina" has been retired.

[pberggren1]

I am the only wegeners patient for miles and miles. I am sure of it.

I am sure there are many other Weggies near you. Just ask your doc how many patients he has.

[drz]

I am sure there are many other Weggies near you. Just ask your doc how many patients he has.

I remember we discussed the numbers a while back in some other thread. Somewhere we had a number of cases diagnosed in Canada and that number along with the current population of Canada yielded a ratio of around 1 in 8000 which seems more credible. My internist in a smaller town has three other Weg patients in her caseload of around 2000 patients and she is not a Weg specialist. On the Webinar they just had it was stated that if all auto immune diseases were added together, AI diseases would easily be a top ten disease. It was also mentioned somewhere that AI diseases seems more frequent further from equator so maybe the ratio might be somewhat lower in warmer climes nearer the equator.

[HopeinTN]

If you are taking the cytoxan in pill form what is the general time frame for the body to be in your system long enough to notice side effects? I've been on it since last Thursday and getting curious. So far, and as previously mentioned, just aches in my legs and lower back. Not sure what that's from but could be one of the meds or just in my head. Thanks!

[Sangye]

It takes about a month for cytoxan to work fully. Sometimes you get a little relief sooner, but it's mostly due to the pred.

[kulharv]

hello HopeinTN,

I was on CTX IV Infusion and had 7 treatments from May to end of Sept. Only main side effect was hair thinning. I like you have thick curly hair so no one really noticed the difference other than myself.

As or the prednisone, like everyone has mentioned, you will notice weight gain, tendency to be hungry a lot more, mood swings. I have now just finished RTX and had knee pains and the dr said it was the prednisone, so this could be something to watch out for.

Drink all the water you can and remember to go pee right away and do not hold it!!!

Bactrim: no side effects

Good luck with everything!

[delorisdoe]

I am sure there are many other Weggies near you. Just ask your doc how many patients he has.

nope...none near me...I am the only one. I thought I was the only one in canada until I came here-lol. I like being a little delusional. I actualy do know how many wegs patient my doc has.

[pberggren1]

nope...none near me...I am the only one. I thought I was the only one in canada until I came here-lol. I like being a little delusional. I actualy do know how many wegs patient my doc has.

You are supposed to tell us how many silly.

[dennis2512]

thanks for all this info husband dx in aug on same meds hes not feeling well no support at all in australia i only have this forum frustrating he is 49 my name crissie email add [email protected]

[Al]

thanks for all this info husband dx in aug on same meds hes not feeling well no support at all in australia i only have this forum frustrating he is 49 my name crissie email add [email protected]

Crissie, you will get support here, and not just local--we're all over the world! Check back often....

Al

[HopeinTN]

Sorry with all the questions but I know you all understand and are a huge help. Still feeling ok from the Cytoxan, preds and bactrim aside from leg andlower back aches. As of today (1 week in) my lower left side/back hurts. This is the same side as kidney stones and infections in the past put not quiet as painful...yet. Is this commom with the meds? I have an email to the doc, but trying to fish for info in the meantime. This is not the same side as my funky Weg lung/lobectomy.

Yes, I'm drinking plenty of water.

Thanks!

[delorisdoe]

I love your signature. I use the very same philosophy when chosing a hair stylist...dont go to the ones with bad hair.

[Al]

I love your signature. I use the very same philosophy when chosing a hair stylist...dont go to the ones with bad hair.

The way I heard it is: When you go to the barber shop, choose the barber with the worst hair--the other barber does his. In my case, the issue is moot, however. Not enough hair to worry about....

Al

[delorisdoe]

I never thought of it that way. I just dont know though if i could go to the girl with a dreadfull cut.

[HopeinTN]

Thanks for the laugh!

[HopeinTN]

I had my first post Cytoxan labs today, and I'm happy to report that everything looks good so far...I think. Aside from an elevated MCH. I'm guessing nothing to worry about or my doc would have discussed it with me. Anyone know what would cause this?

Thanks and have a great weekend!

[Al]

I had my first post Cytoxan labs today, and I'm happy to report that everything looks good so far...I think. Aside from an elevated MCH. I'm guessing nothing to worry about or my doc would have discussed it with me. Anyone know what would cause this?

Don't worry about it much, HK. A lot of weird things can happen to red blood cell readings when on CTX, which is hard on bone marrow, where the blood cells are manufactured. If the hematocrit is also lowered, it gets to be somewhat more of a concern, as this is the definition of anemia. If the CTX did its job, the WBC (White Blood Cell count) should be quite a bit lower than pre-CTX.

Al

[HopeinTN]

Thanks Al. I'm not all that concerned, but knowledge is power and I love to learn. Actually, my WBC count was low pre- diagnosis at 3 and then up to 6.3, and now post meds it's 9.9. Again, not too worries just curious.

Thanks!

[Sangye]

Your doc should be doing labs every 2 weeks while you're on ctx to make sure your bone marrow is holding up. Hopefully you have a conscientious doctor. My first local rheumy just ordered labs but ignored them. Turns out ctx is overly toxic to my bone marrow and I was kept on it for 7-8 months anyway. I grew weaker by the day (which is quite the statement, considering that I was already near death at dx).

[Al]

Your doc should be doing labs every 2 weeks while you're on ctx to make sure your bone marrow is holding up. Hopefully you have a conscientious doctor. My first local rheumy just ordered labs but ignored them. Turns out ctx is overly toxic to my bone marrow and I was kept on it for 7-8 months anyway. I grew weaker by the day (which is quite the statement, considering that I was already near death at dx).

Your present WBC looks pretty good, HK, though it is curious why it went up post CTX. At this stage, two week labs are about right, as Sangye says. When you are certifiably in remission, and you are pretty sure about your own symptoms, a month is okay. But I wouldn't go much beyond that. Indeed, CTX is quite hard on the bone marrow. This is especially a problem when the kidneys are depressed. I remain technically anemic to this day, though I don't (usually) feel so, and this is months after the last CTX treatment.

Al

[HopeinTN]

Yeah, I'm not sure why my WBC would go up during treatment. Any ideas what would cause that?

Take care,

[pberggren1]

Yeah, I'm not sure why my WBC would go up during treatment. Any ideas what would cause that?

Take care,

I know that pred can make WBC go up.

[HopeinTN]

Thanks Phil. I'm sure it's nothing to worry about anyway, just like to be informed.

[drz]

Yeah, I'm not sure why my WBC would go up during treatment. Any ideas what would cause that?

Take care,

Mine always went up with an infection, usually bladder infection from the CTX. Other wise WBC usually dropped and dropped till they stopped CTX for a rest and then restarted it after WBC recovered.

[HopeinTN]

drz- I'm betting that is the same case for me. I had a follow up with my PCP today and interested in hearing the results of my urinalysis. I had my fist lab follow-up last week with my rheumy and I left a urine sample then but they tossed it. Said they didn't need it on the first lab check-up. At my next appointment this will be addressed since I want my urine/kidney function followed closely. Not sure why they didn't go ahead and check it since they had it and I had been asking my rhuemy about lower back aches and bladder spasims.

Thanks!

[HopeinTN]

I can't remember if I took my meds after eating breakfast or not. I feel like I can't remember anything lately. I just picked up a pill box at the drugstore, so I hope that helps.

So, I really don't think I took it, but should I take them now in case? If I did, would double dosing hurt me?

Thanks, and I'm too young to forget my meds...or need a pill box.

[drz]

I can't remember if I took my meds after eating breakfast or not. I feel like I can't remember anything lately. I just picked up a pill box at the drugstore, so I hope that helps.

So, I really don't think I took it, but should I take them now in case? If I did, would double dosing hurt me?

Thanks, and I'm too young to forget my meds...or need a pill box.

Pill boxes are great but not fool proof. Pred causes some concentration lapses and I have taken my morning meds at night some times or other way around. Generally it is better to wait than to over dose on most meds. Many medical procedures require you hold certain meds for a few hours or even days so skipping a day would seem safest generally. Depends some on what meds you are taking. Call your pharmacist for advice on your particular meds.

[HopeinTN]

It's the CTX and Prednisone. I think I'll just waiting. I'm already having trouble sleeping so taking the preds at night sounds like a bad thing.

Thanks!

[Al]

It's the CTX and Prednisone. I think I'll just waiting. I'm already having trouble sleeping so taking the preds at night sounds like a bad thing.

Thanks!

I wouldn't risk doubling up on these wicked drugs, HK. If you are having trouble remembering, and if the pill box thing isn't doing the trick, please get someone else to do the proofreading!

Al

[RudiK]

Hello Hope, I had the same problems when I was first diagnosed. I'm an old guy and may have an excuse for forgetting - LOL, but . . . . My daughter-in-law is a RN working in the kidney transplant dept at Georgetown University Medical Center, she introduced me to the website Pill Box Organizer Reminder (http://www.mymedschedule.com) and to color coded pill boxes. The website is free and lets you enter all your drugs, when you should take them and and how much, descriptions of each drug, it also includes a health record page that you can use to record and keep track of any measurements you take, i.e., blood pressure, blood sugar etc. This website together with color coded pill boxes (green for morning, blue for noon, and red for night) have kept me out of trouble with taking the wrong meds.

[HopeinTN]

That's great info to have. Thanks so much for sharing. I really think the meds have made my memory slack. I'm pretty sharp, but lately, not so much. Thanks again!

[gunnyl]

I've been on Cytoxan, Prednisone and Bactrim for a little over 3 months now. Only thing I can tell you is to keep a positive attitude and keep a POSITIVE ATTITUDE, did I mention POSITIVE ATTITUDE? It's a long haul, keep a journal and discuss everything with your Rheumatologist. Everything is important, don't overlook anything, let the Dr. decide if it's important and if you don't feel right about the answer, get a second opinion. My only issue is the God Awful taste that it leaves in your mouth, all the time. You will feel fatigue from the cytoxan, it's normal. As they change the dosage for the Prednisone you will go through withdrawals and it takes about a week for your body to adjust. I can say that I haven't gained one pound from the steroids but I tend to snack on fruits and vegetables. I do eat Fried Chicken, Fried Catfish and Fried Sweet potatoes so I'm not a total health freak, I do cheat! But remember you can eat all the carrots and celery you want just avoid the Ranch Dressing :-) Fruits are really good too, lots of apples, oranges (bananas are high in starch so don't over indulge). Try to eat healthy when you can because of the steroids not that you shouldn't anyway. I didn't lose all of my hair, it just grows a LOT SLOWER! Kind of nice being able to shave every other day! Keep a positive attitude and when you get frustrated, talk about it, don't hold it in. I'm in remission now but still have 3 more months of Cytoxan and Pred ahead of me to make sure I don't relapse.

[Dirty Don]

Did I hear an echo??? POSITIVE ATTITUDE...tude...tude...tude...

I am on your team gunny! Attitude has a lot to do with surviving most anything...well stated & best of luck in remission!

[HopeinTN]

Yes, the positive attitude is a must. I haven't gained wait but it's a struggle as I've developed a craving for sweets which I never had. I mostly eat healthy but have added several other good options to my diet. It's like taking on a part time job. The taste it leaves in my mouth doesn't make me as hungry as I thought I would be. Well enough I suppose. The only thing I really notice and is quiet bothersome is the pain/aches in my legs. I guess I just thankful it's not my entire body aching.

[Al]

Yes, the positive attitude is a must. I haven't gained wait but it's a struggle as I've developed a craving for sweets which I never had. I mostly eat healthy but have added several other good options to my diet. It's like taking on a part time job. The taste it leaves in my mouth doesn't make me as hungry as I thought I would be. Well enough I suppose. The only thing I really notice and is quiet bothersome is the pain/aches in my legs. I guess I just thankful it's not my entire body aching.

All this is true. of course. The question is, how do you maintain that attitude when you hurt so much? Just saying, "buck up, mate" doesn't really do it. I think there is a long form answer and a short form answer to this conundrum. I'll give the short form here: For me, reading and learning and sharing what I have learned is the ticket. Too short? Let's talk....

[Dirty Don]

In light of maintaining 'that' attitude and balancing pain of all kinds, I would suggest THAT is THE journey, the point as it were...if anyone knows anymore than that, they need to share it...as the conundrum exists within the journey we all are taking, NOT at the end of our journey as an answer to anything but the next generations...did I say that again??? OMG! It's the PRED, honest...!!!!

[Al]

In light of maintaining 'that' attitude and balancing pain of all kinds, I would suggest THAT is THE journey, the point as it were...if anyone knows anymore than that, they need to share it...as the conundrum exists within the journey we all are taking, NOT at the end of our journey as an answer to anything but the next generations...did I say that again??? OMG! It's the PRED, honest...!!!!

Pred has interesting characteristics, Don, for sure. But your point is one I could not have made better. Also, it is much better than the long one I could have indulged in....

Al

[gunnyl]

If the Disease wasn't bad enough, the Drugs they use to keep it at bay are sometimes worse! I agree Al, "buck up Mate" as you say it or as a Marine "Suck it up" the way I would put it doesn't always elicit the Positive Attitude and Motivation we need. I come here and read others stories, do some research, read and meditate to try and clear my mind. I think about my wife and kids and what life would be like for them if I gave up. I think about all of you who are pushing through the same things I am and the ones who have it worse and I realize how lucky I am and I find strength in that. And there are those days where I just feel depressed. I found it's ok to have those days as long as I don't allow myself to fall into a pitty party and pick myself back up! Also being a Marine and having seen the things I've seen in my lifetime I think about the young men and women coming home who are fighting things you and I don't ever want to know about and it makes my self pity look really small. That gives me the Motivation to have a more Positive Attitude!

[Al]

Also being a Marine and having seen the things I've seen in my lifetime I think about the young men and women coming home who are fighting things you and I don't ever want to know about and it makes my self pity look really small. That gives me the Motivation to have a more Positive Attitude!

Excellent points, Gunny. Now, as a marine, you also know what it means to be is a situation where you have someone watching your back. This disease has, at the cellular level, more blood and gore than even a leatherneck wants to face without buddies, I think, though let's not take the "enemy" metaphor too seriously. Still, I truly believe that we on the forum need to be, and are, foxhole chums of a sort. For this ailment, "suck it up" needs to be, and is, a community project.

Al

[HopeinTN]

I had my 4 week post meds follow-up today and they decided to double up on my Cytoxan dose. I think I was on a low dose for the first four weeks to make sure I could tollerate it. Guess I can aside from a few minor side effects. However, the pain in my chest that started this whole thing is back and I'm worried. I brought it up today as it actually started over the weekend and they are almost sure it's the granulomas that are along the pleura of my lungs not playing fair. I'm sure that's all it is but how bad should I let it get before heading to the ER/Dr.? It's much worse tonight and contstant than earlier today. Until this ordeal not much scared me, I wish I could say that now.

While this stinks, I do feel better about the future of Wegs and my treatment that we revised slightly today. Just wish this pain would go away as I associate it with hospitals, surgeries and missing lobes of my lung.

[Al]

I brought it up today as it actually started over the weekend and they are almost sure it's the granulomas that are along the pleura of my lungs not playing fair. I'm sure that's all it is but how bad should I let it get before heading to the ER/Dr.? It's much worse tonight and contstant than earlier today. Until this ordeal not much scared me, I wish I could say that now.

Call now, HK. Let the other apprehensions be for the moment. Call.

Al

[HopeinTN]

I will email my doc tonight. After an hour it almost went away entirely. So weird. I can't wait to get passed the feeling of I'm being a nag, driving my doc crazy and fear of hospitals. I know it's gets easier.

You can't keep a good gal down.

Thanks!

[Al]

I will email my doc tonight. After an hour it almost went away entirely. So weird. I can't wait to get passed the feeling of I'm being a nag, driving my doc crazy and fear of hospitals. I know it's gets easier.

You can't keep a good gal down.

At issue is how to keep a good gal up. Don't worry about driving the docs crazy; they get paid well to listen to sick people, so let 'em earn their keep. You are right to mistrust hospitals; they are, as the saying goes, no places for sick people. Still, the best way to avoid patronizing them is to not let things go too far. So nag away! Even as we nag you!

[Sangye]

HopeinTN, I agree with Al. It's important to tell your doc anyway. When I've had lung issues the symptoms sometimes come and go even while the Wegs activity is increasing.

Why did they keep you at such a low dose of ctx for 4 weeks? That isn't the norm. They usually start you at 50 mg, then increase to 100 and 150 mg by the end of 2 weeks. I'm going to nag you to get a Wegs specialist involved. If you can't travel to one, then at least consider getting a VF doc to consult with your doc, okay?

[HopeinTN]

I think they wanted to make sure that I could tolerate the CTX and gave it 4 weeks. The labs confirmed that I can tolerate it so it was increased. I mentioned the pain in my lung and they said to just keep a close eye on it. We know what it is but if it gets to a point where it effects my breathing or too painful to go to the ER. A new Dr. from Vanderbilt was brought in Tuesday and he went over everything with me thoroughly. I will look into contacting a Dr. from the VF list and make sure he agrees with everythng.

I hope you all are enjoying yoru Thanksgiving day and continue to have many things to be thankful for. For me, the one thing that comes to mind (aside from family...) is that I'm so thankful to have found this site!

Thanks again guys and gals!

[HopeinTN]

One thing my doc said at my last appointment is that she thinks the pain in my legs and knees could be osteoarthitis. Really? I think it's just the meds. I'm not sure I'm on board with her opinion on this as it just started after I started treatment. Hmmm. It really hurts my knees to walk up or down steps. Also, I'm kind of worried that they will be checking my labs every 4 weeks rather than 2. Is that normal?

The two docs I have at Vandy seem to be on top of this but I can't help but wonder.

[Sangye]

If your symptoms began after Wegs treatment then it is not osteoarthritis. That's just ridiculous. OA takes years to develop. OA pain and stiffness come on gradually, and generally do not affect both hips or both knees at the same time. It's quite common for MDs to tell patients that their symptoms are from arthritis or old age, without doing anything to really check it out. With Wegs you cannot let a doctor make that mistake. Joint pain is often a sign of severe disease activity, especially if it's worsening.

[HopeinTN]

I was kind of thinking that same thing. I'm only 39. Should I confer with the one Wegs specialist that is in Nashville from the VF website? I wasnt to keep my Rheumatologist but I guess I can have both.

[Dirty Don]

You can have both, more brains in the game, the easier it is to play! Sincerely, try to get the best, to the best, as much as you can. When I went into my internist cuz I wasn't feeling well, he tried his best...later after all this crap had subsided a bit, he admitted he had no idea what WG is, he'd only heard of it in medical articles and studies, never seen nor treated the reality. So, get the best you can...it's imperative...best of luck!

[Al]

One thing my doc said at my last appointment is that she thinks the pain in my legs and knees could be osteoarthitis. Really? I think it's just the meds. I'm not sure I'm on board with her opinion on this as it just started after I started treatment. Hmmm. It really hurts my knees to walk up or down steps. Also, I'm kind of worried that they will be checking my labs every 4 weeks rather than 2. Is that normal?

The two docs I have at Vandy seem to be on top of this but I can't help but wonder.

Checking labs every four weeks is about right for remission; if there is an active flare, I'd go for some higher frequency.

Once you have GPA or a similar disease, you cannot let the doctor blow you off with a vague, guess-y extra diagnosis. The pains you describe are known to be associated with your disease and some of its meds, so these should be the first suspicions of the doctor; anything else would need to be specifically proven! So nail that doctor, HK!

Al

[HopeinTN]

I think I'll give a call to the VF dr. tomorrow and just see if I can get in for a consult. If it's meds, I get that but is it doing damage or just normal side effects. If it's Wegs, then does the meds just take longer to work?

Thanks All!

[pberggren1]

Not too sure TN. But you are on the right track to get a Wegs doc involved ASAP. I would not be without mine now.

[HopeinTN]

I found the following on the VF website, so I'll see if I can get in. I've seen his name on here before.

CAPIZZI, STEPHEN A., M.D.

Thanks.

[Al]

I found the following on the VF website, so I'll see if I can get in. I've seen his name on here before.


Let us know how the guy accounts for himself!

[HopeinTN]

Also, does anyone else think that 4 weeks is too early to take me down to 20mg of prednisone daily from 30mg, while on 100mg daily Cytoxan?

[delorisdoe]

I can't remember if I took my meds after eating breakfast or not. I feel like I can't remember anything lately. I just picked up a pill box at the drugstore, so I hope that helps.

So, I really don't think I took it, but should I take them now in case? If I did, would double dosing hurt me?

Thanks, and I'm too young to forget my meds...or need a pill box.

Any time I ever missed a dose my body let me know within a few hours...the pain would become horrible-i assumed from pred withdrawl. I never had to wonder if i missed a dose, it was clear

[Al]

Also, does anyone else think that 4 weeks is too early to take me down to 20mg of prednisone daily from 30mg, while on 100mg daily Cytoxan?

Should be fine, if properly monitored.

Al

[HopeinTN]

I contacted Dr. Capizzi's office (Physician from the VF website in Nashville TN) and whiel talking with teh appointment scheduler she said that he is not a vasculitis doctor or Wegs specialist but a pulmonologist. Needless to say, I didn't make an appointment. I have a great pulmonologist at Vandy and I was just wanting a consult with a specialist to make sure everything is in line. Oh well.

Plan B. Start taking notes and coming up with specific questions for my rheumatologist. Such as, 1- are my knees/legs hurting so bad because of meds or why would you think osteoarthritis right off the bat and not Wegs, 2- what's up with the sores on my scalp getting worse and why would you think this is eczema and not Wegs. That should be a good start.

I'm now on week 5 of the meds.

[Sangye]

I'm going to lean on you to get a Wegs specialist involved. Your rheumy has already blown off your leg pain, meaning either he isn't taking you seriously or he isn't skilled enough with Wegs, or both. Is there no way you could travel to a major center to establish yourself as a patient? They would direct your care and your local doc would carry through on it.

If you get a VF consultant, you have no way to ask questions. So if your rheumy doesn't ask about your leg pain, they never know.

I'm nagging because I know what Wegs can do, and how quickly it can go south. And we've lost too many members as a result of inadequate care.

[HopeinTN]

I appreciate the nagging. Thruth is, my sister hasn't been so supportive, which is odd since she has been suffering with Chron's for many years and lots of surgeries. Everytime I mention seeing a specialist she shuts me down with "you are fine and they are on top of it so stop worrying and stop reading about it online". She makes me feel like a worry wart and that I'm blowing everything out of porportion. It's like no one can be sick but her. It's so hard to deal with and maintain a good relationship with her.

I'm staying positive but I want to learn as much as I can so I know what to watch for but she doesn't see it that way. It really breaks my heart and makes me feel so alone. I have a boyfriend but he also doesn't seem to understand what I have or how sick it can make me if I don't stay on top of it.

My Rheumy is a resident but I also see the attending each time and he has been around and seems to be very good. The resident is teh one that mention the OA and the Eczema. I may shoot the attending Dr. an email and get his thoughts.

The closest Weg's specialist is in Cleveland and that's not all that close to Nashvegas.

THANKS SO MUCH!

[delorisdoe]

I have had so much miscommunication between residents and attendings this year it drives me nuts. My wegs doctor is not in the room with them when they first see me and I think that they go back to him with their report and if they forgot to ask something or check something they pretend like they did. At least that is how it seems to me sometimes. Earlier this year I had an unrelated problem and saw a surgeon and his team of med students and residents...it was a completely different experience. He was in the room the entire time taking notes on what answers I was giving to the residents. If they forgot to ask something he would ask it himself. Funny thing is when I went for my follow up with him he was called away to do a surgery and I was seen only by one of his residents who asked me strange questions, gave me strange answers to my questions and I left so confused. When I went to my wegs specialist for my regular weg appt his resident asked me about the unrelated issue and when I told him what the surgical resident said he reported what he thought he heard me say to the attending weg specialist and well he did not report what I said properly and I was sent for some unnessasary tests.

I think what I mean to say here is that residents can be great but they sometimes let things get lost in the translation and that drives me nuts.

[Dirty Don]

Make the effort to connect to Cleveland or whomever is closest who has expertise/experience in this area...it means a lot in terms of how you're treated...really does. Get your local doc to get more interested in you, and make the connections to wherever you can get your best WG info from. So, nag nag nag! It's all about you now...be safe, be peristent, be patient. And you boyfriend needs to do the same...my wife doesn't understand this anymore than me, but she's patient and understanding with me and my WG foibles!! Sheesh, and I'm a handful, believe me! LOL

[Sangye]

Hope, your sister probably doesn't realize that Crohn's isn't very rare and is very straightforward. It doesn't require ultra-specialists to treat it. Regardless, it's up to you to take control of your care. No one else will go to bat for you the way you can for yourself. It's really hard when you don't feel well, but I know you'll find the strength to do it.

[Al]

Hope, your sister probably doesn't realize that Crohn's isn't very rare and is very straightforward. It doesn't require ultra-specialists to treat it. Regardless, it's up to you to take control of your care. No one else will go to bat for you the way you can for yourself. It's really hard when you don't feel well, but I know you'll find the strength to do it.

...Although many Crohn's sufferers are nevertheless told by their doctors that it is all in their head (!), rather than treat it like the nasty autoimmune disease that it is. But the point is that you do need to take charge of your situation, HK. Self-empowerment is, well, powerful, though not so easy for a sick person. This is why we are lovingly nagging you. If you need to additional medical help, go for it! If Cleveland is too far, you might try Birmingham, Atlanta (Emery), or Chapel Hill (UNC).

Al

[HopeinTN]

I honestly don't know if she even recognizes it as a disease. I'm not sure how to take her behavior but have always been so close and she's 8 years older than me. I was always there for her when she got sick, gave blood for her surgeries, always the first one waiting for her with roses after surgery...we were close. Now it's different, and I don't feel compasion from her. Maybe she's just scared for me and doesn't know how to react. She has had it rough and I'll take my Wegs over her Chrons anyday. She's had so many surgeries and a permanent illiostomy. I just wish she would be more understanding.

I will look into those other locations you mentioned Al. Birmingham and Atlanta are much closer.

[Al]

I honestly don't know if she even recognizes it as a disease.... I just wish she would be more understanding....

It really is hard, HK, to explain to others what this disease is all about. Sometimes, it seems best just to say that it is a really nasty, non-contageous autoimmune disease and leave it at that. And sometimes, a little more detail will help, though not with everyone. For freelancers like myself, going into too much detail will scare the clients off unnecessarily, I've found. For them, I have reverted to the simplified version.

Let us know if you find a closer vasculitis specialist....

Al

[HopeinTN]

Now I’m really concerned. I started having very sharp pain on the back side of my gimpy lung. This pain comes and goes and is very deep and sharp. It progressively got worse and in addition I was experiencing shortness of breath and a feeling like someone was sitting on my chest. I had workers at my house yesterday so as soon as they left I headed to the ER. I was very scared as this pain was the exact location of the pain I had with a pleural effusion and really close and as bad as the pain from a kidney stone and subsequent infection.

(Keep in mind- this is the hospital where my dr.’s are and all my records can be accessed with a click of the mouse. They are aware of Wegener’s and my current treatment)

First I got to Vanderbilt at 7:30 pm. Waited 4 hours before seeing a doctor. They didn’t want to do any more CT scans because I’ve had so many so they did a chest x-ray. No fluid. Did a blood test that would show if it were a clot, Negative. He then said I could run a urinalysis but it would be another hour or you can head home an get some rest….really? It’s now 1:30 am and I have no answers or anything for the pain that comes and goes with no rhyme or reason. I say, sure, please check the urine. The nurse comes back to my chair (yes, a chair, sitting straight up in a room of 4 others in chairs with IV’S- so bizarre) and ask me for a urine sample. I say, “what happened to the one the other nurse took from me”? It can’t be located. Seriously?

So, the doctor comes back and says the urine looks fine and check in with my PCP tomorrow. I left there feeling like an idiot and like I was lying. Horrible experience. I get online today to see what my labs showed from the ER (I have a Vandy log in and can check everything) there were red blood cells in my urine which no one even mentioned or were concerned about and no blood work at all. What the heck happened and how concerned should I be? So far today I’m pain free and no breathing issues, which doesn’t surprise me because as I told them at the ER,I think it’s something with the kidney.

So exhausted! Why do I feel so crazy?

[HopeinTN]

Just another reason I should get in touch with one of the specialist. I promise it's on my list. By the way, I did email my Rheumy and she's out of the country for 3 weeks but hope to get an email back from her fill-in.

[Sangye]

There is no such thing as a blood test that can rule out clots. The D-dimer can indicate a clot but is not a reliable test at all. They should have done a CT with high-speed dye (aka pulmonary angiogram) to rule out a clot.

You can have pain like that from any type of Wegs lung involvement. It has to be tracked down. There is also the chance that the pain was cardiac-related. Did they do blood work to check heart enzymes?

Any time you go to an ER and they check blood and urine, you must ask for the results before you go. Make sure they check kidney function in the blood work. Always. I don't have kidney involvement but Dr Seo orders the labs to check every month.

[chrisTIn@]

I left there feeling like an idiot and like I was lying. Horrible experience.

I know the feeling! Sometimes it's very hard to be 'assertive' all the way, with this crazy disease!
I see you got some good advice from Sangye.
I hope you soon will figure out if your kidneys are okay...

[HopeinTN]

Such good info to have. THANK YOU Sangye. I'll call them now and get copies.

[HopeinTN]

I have my labs finally and I can't see a test for D-Dimer. Would it have another name?

[Sangye]

Here (http://labtestsonline.org/understanding/analytes/d-dimer/tab/test) is a link with info about the D-dimer test, including other names. That website is a good resource for learning what lab tests mean.

How are you feeling now? Any more chest pain or other symptoms?

[HopeinTN]

I talked to a nurse in the ER last night via phone and she saw where the D-Dimer test was ordered but no record of the labs result...aside from a note in my chart from the doc that is was in normal range. I'm not sure it was ever processed. I see all my labs from the ER visit and no where can I find this test.

I'm feeling better, the pain is minimal, and I was mostly worried about the shortness of breath and raipid heart beat (which I no longer notice) and that's why I went. I'm guessing the pain is rom Wegs but would that also cause the other symptoms?

[Sangye]

That's bizarre about the lab test. Glad you're feeling better but I'm still concerned. If it happens again, please go to the ER right away and get the CT with high-speed contrast.

[HopeinTN]

I'm now in month 3 of Cytoxan/Pred/Bactrim and I'm not feeling better. I wish I were a more patient person. My legs ache so bad and I still have shooting pains in my lung. I hope this picks up the pace and soon.

Take care all!

[chrisTIn@]

I'm sorry to hear that you don't feel better yet.
I sure hope you soon will...

[Al]

I'm now in month 3 of Cytoxan/Pred/Bactrim and I'm not feeling better. I wish I were a more patient person. My legs ache so bad and I still have shooting pains in my lung. I hope this picks up the pace and soon.
Yiyeee. This is stupid. Of course, everything about this stupid disease is stupid. Hang in there, Katrina. And, whatever you do, do not go overboard on the patience thing....

Al

[HopeinTN]

Thanks guys. My next house will not be a multi level house. The steps are my nemesis. Are the aches and muscle cramps common with the treatment?

[Sangye]

Muscle cramps are common with high-dose pred but general achiness (especially joint pain) should not be happening. It makes me wonder if the Wegs is not being controlled well with those drugs.

[HopeinTN]

Thanks for the info. I'll check in with my doc and make sure they know. Is tylenol or ibuprofen best for the joint pain?

[Sangye]

Weggies should not take ibuprofen.

Don't take Tylenol on anything approaching a regular basis, as it's VERY toxic to the liver. You've already got the liver dealing with the other drugs.

I wouldn't take Tylenol more than once a week at the most. Don't ever take more than the dose on the bottle and never take it more frequently than the recommendations on the bottle. If it says "every 4 hours" don't take it at 3 hours. It sounds picky but it truly is that toxic. I've posted research in this forum that shows how easy it is to overdose on Tylenol and damage your liver. The above are the new guidelines that MDs are using--after decades of Tylenol causing temporary or permanent liver damage and uncountable numbers of deaths.

Really you have to figure out why you're still having so much pain. It may be necessary to increase the dosage of one or more of your meds or change drugs.

[Al]

I find it interesting that some (but not all) of the pred side effects lists include "joint pains". This sounds dubious to me, as a good proportion of pred users have diseases that cause join pain on there own--like, just for example, WG.

Al

[HopeinTN]

Thanks all. If not Tylenol daily or ibuprofen, then what can I take over the counter?

[pberggren1]

Thanks all. If not Tylenol daily or ibuprofen, then what can I take over the counter?

whisky......lol

[LisaMarie]

Bad Phil...you know we can not take our meds and drink alcohol....lol...I try mediation and warm compresses on my joints and back...or a warming blanket...just a thought...love ya Phil.Burnie more whiskey ..k

[Al]

Bad Phil...you know we can not take our meds and drink alcohol....lol...I try mediation and warm compresses on my joints and back...or a warming blanket...just a thought...love ya Phil.Burnie more whiskey ..k

Er, where are you writing from, LisaMarie? What, exactly, do you mean, "over the counter", hmmm...?

Al

[HopeinTN]

I'm originally from KY, so I prefer Bourbon and I'm not opposed to a shot or 3 before bed. However, by over the counter I mean non-prescription. If Ibuprofen or tylenol then what's the non-prescription drug of choice for Weggies?

It doesn't feel so much muscular as it does joints.

[Lightwarrior]

I saw your other post about your situation. I had similar nodules in my lung at the time of diagnosis. Hope you start feeling better with the meds soon! keep us posted.

I also had nodules in my lungs, and my lungs were what they called broken glass appearance. Once I started my cytoxan and prednisone it cleared up.

[HopeinTN]

Thanks Lightwarrior, that's encouraging. I'm so curious as to what effect the medicine is having on my lungs. My next appointment is at the 3 month mark and I think they will run a CT scan to check it out.

Where are you in your treatment?

[annekat]

I find it interesting that some (but not all) of the pred side effects lists include "joint pains". This sounds dubious to me, as a good proportion of pred users have diseases that cause join pain on there own--like, just for example, WG.

Al I guess everyone is different, but joint pain is definitely not a side effect of pred for me. Pred gets rid of my joint pain which I presume is from Wegs.

Anne

[Al]

I guess everyone is different, but joint pain is definitely not a side effect of pred for me. Pred gets rid of my joint pain which I presume is from Wegs.

Anne

Sounds more typical to me, Anne.

Al

[Rita.M]

Yes I agree with Anne. Before I was on Pred. the pain in my knees was terrible, I could't walk down stairs , had to do a crab walk. As soon I was on Pred. it all went away.
Out of all the symptoms I had with Wegs this was by far the worst to cope with. I'm so glad the Pred. has worked ,fingers crossed it wont come back when my dose is reduced.
Joint pain is a symptom of Wegs. my hands were bad as well as my wrists, elbows & ankles. So far I haven't had any side effects with meds. have been on them since just before Xmas.
Take care Rita.

[annekat]

Rita, when I started tapering pred below 15mg./day, the joint pain started to come back just a little, but that's what seems to be so tricky about tapering pred at that level. It appeared in my fingers and elbows when making pottery in December, and a little in my knees, but nothing close to the pain I had before ever being on the drugs. Now I'm at around 10-12mg. a day, and although I've been working with my hands and walking around in 10" of snow, I have no pain at present.

Anne

[Rita.M]

Am on 30mg of Pred. & it goes down by 5mg per week so by end of March I will only be on 10mg. I hope I will be pain free then because I do a lot of exercise & when the knees were bad that really stuffed things up.
Your symptoms sound a lot like how mine started , ears , joints. I was dx early but it had already just started in my kidneys, This Wegs is a very scary disease even with all the drugs you never know what's around the corner.
Thanks Dad for passing this on to me , it's very rare to get Wegs & even rarer to inherit it.
Rita

[HopeinTN]

Could it be the Cytoxan or the Bactrim? Oddly enough, the pain in my knees was noticable after we tapered the pred. My biggest fear is that the treatment isn't working. Best case, it's typical side effects or the taper. Thanks guys!

[drz]

Could it be the Cytoxan or the Bactrim? Oddly enough, the pain in my knees was noticable after we tapered the pred. My biggest fear is that the treatment isn't working. Best case, it's typical side effects or the taper. Thanks guys!

Hope it is just a side effect of pred taper but for me those type of pains usually went away in a few days and were much milder than the big joint pains before diagnosis and treatment.

[Sangye]

I think by listing pain as a side effect of pred they're referring to tapering off of it. It's pretty common to go through some joint pain. It can be surprisingly bad, actually. But like drz said pred-pain is temporary and goes away, while Wegs pain continues.

[annekat]

I think by listing pain as a side effect of pred they're referring to tapering off of it. It's pretty common to go through some joint pain. It can be surprisingly bad, actually. But like drz said pred-pain is temporary and goes away, while Wegs pain continues.
That sounds like what I've experienced most recently. Pred-tapering pain, not Wegs pain at this point.

Anne

[MCC]

Thanks Lightwarrior, that's encouraging. I'm so curious as to what effect the medicine is having on my lungs. My next appointment is at the 3 month mark and I think they will run a CT scan to check it out.

Where are you in your treatment?

Just wanted to say that I also had 'granulomas' in my lungs and kidneys, I think that's what your talking about? After treatment it is all completely gone. The one in my kidney was 6 cm long! Good luck with your treatment :)

[HopeinTN]

Thanks MCC. That's exactly what I was wondering. I hope that is the case for my granulomas in my lungs. I'm still having sharp pains in my in them so who knows, but one can only hope. Thanks for sharing. I go in tomorrow for my 3 month follow-up.

[HopeinTN]

My doctor decided to post pone the CT scan for 8 weeks. And continuing to taper down on the prednisone. I know they know what they are doing but seeing with my own eyes will make me feel better...I think.

They confirmed that my diagnosis was determined from the open lung biopsy (lobectomy). My ANCA was negative, with a positive MPO and a negative PR3. Still not sure what all thsi means though.

[Thakator]

Hope,
The pain you feel is very likely from the open lung biopsy itself and may not be from granulomas or nodules- - unless, of course, they are unusually large. I had a golfball sized one for awhile and it definately hurt. They took it out during my open lung biopsy and wedge resection. I still have constant pain in the lungs/chest, but it is from the surgery (14 months ago) and this is quite typical for that type of operation. In fact, many people continue with the pain for years and many for ever! Don't want to bum you out, but dem is da facts.

The main thing is that your pain may not imply any granuloma or nodule involvement - - your lungs may be clear even though they hurt. Pain is one thing, your lungs filling up is quite another. And, if you had nodules they may very well have disappeared by now. They can do that, thankfully. Take care, Ron

[HopeinTN]

Ron-

I thought about it possibly being from the surgery as the docs suspect, but I'm also having pain in the lung that I didn't have surgery on, where I also have granulomas. My inital pain didn't have as much to do with size as it did the location of the granulomas. Since the surgery I have had an odd pain with yawning and I'm guessing that may hang around for a while if not forever.

I will lean towards the side of this being surgery related, well, at least until I see otherwise.

Thanks so much for your info and I wish you well!

[Al]

....They confirmed that my diagnosis was determined from the open lung biopsy (lobectomy). My ANCA was negative, with a positive MPO and a negative PR3. Still not sure what all thsi means though.

This doesn't make a lot of sense, Katrina. You can't have both negative ANCA and positive MPO, because "MPO" refers to the ANCA that attacks it! They might have meant "negative C-ANCA, which usually is associated with anti-PR-3 ANCA, but then they should have included "positive P-ANCA. It is somewhat unusual for P-ANCA to be associated with granulomas (about 70-80% of patients with only P-ANCA do not have clear-cut granulomatous formations. (This would describe me.) So I am rather curious what they conclude about you!

Al

[HopeinTN]

I was thinking the same thing so that's why I posted it. I'll respond to them today and make sure I get a better explanation. I'm not sure any of it matters since the diagnosis was correct from the biopsy. Could it be a negative ANCA with negative MPO and positive PR3?

Thanks Al!

[Al]

I was thinking the same thing so that's why I posted it. I'll respond to them today and make sure I get a better explanation. I'm not sure any of it matters since the diagnosis was correct from the biopsy. Could it be a negative ANCA with negative MPO and positive PR3?

No, for the same reason! "PR3" Also refers to the ANCA against it. I agree that you need them to clarify matters.

Al

[HopeinTN]

I'm not sure what to think anymore, but I guess it doesn't matter since it was confirmed with the biopsy. They just confirmed that the above is correct. Hmmm.

[HopeinTN]

Apparently, this can happen and it's rather rare to have a positive MPO and it be confirmed WG thru biopsy of the lung. Again, who knows.

[Al]

Apparently, this can happen and it's rather rare to have a positive MPO and it be confirmed WG thru biopsy of the lung. Again, who knows.
Actually, it is not all that uncommon to be positive MPO and have it confirmed with a lung biopsy. It is more unusual, though, to have both MPO antibodies and granulomas. (MPO is generally P-ANCA, and is highly associated with MPA--Microscopic PolyAngiitis, and somewhat associated with Churg-Strauss Syndrome. Classic WG is more associated with C-ANCA and granulomatous formations.) However, MPA sufferers do regularly have lung lesions, like alveolar hemorrhaging, so it is nothing to sneeze at.

MPO is essentially synonymous with P-ANCA, so I still think your people must have meant that you are C-ANCA negative, not "ANCA negative". In a sense, none of this matters, as the treatment is the same regardless. Still, it drives me nuts that the medicos can get away with such a loose explanation.

Al

[Trudy]

Actually, it is not all that uncommon to be positive MPO and have it confirmed with a lung biopsy. It is more unusual, though, to have both MPO antibodies and granulomas. (MPO is generally P-ANCA, and is highly associated with MPA--Microscopic PolyAngiitis, and somewhat associated with Churg-Strauss Syndrome. Classic WG is more associated with C-ANCA and granulomatous formations.) However, MPA sufferers do regularly have lung lesions, like alveolar hemorrhaging, so it is nothing to sneeze at.

MPO is essentially synonymous with P-ANCA, so I still think your people must have meant that you are C-ANCA negative, not "ANCA negative". In a sense, none of this matters, as the treatment is the same regardless. Still, it drives me nuts that the medicos can get away with such a loose explanation.

Al

Al, I think the more people that are diagnosed with vasculitis makes "the classic WG" less classic. I am positive MPO actually more often than I am PR3 - yet sometimes both are positive. I have lung granuloma, sinus, and kidney involvement. I do not think they should force us into standard boxes; however, for the sake of science it seems they must do that!

[Al]

Al, I think the more people that are diagnosed with vasculitis makes "the classic WG" less classic. I am positive MPO actually more often than I am PR3 - yet sometimes both are positive. I have lung granuloma, sinus, and kidney involvement. I do not think they should force us into standard boxes; however, for the sake of science it seems they must do that!

I agree, Trudy. Personally, I have kind of a love/hate relationship with diagnoses, both in principle and in fact. The main reason for a DX--any DX--is to justify a certain therapeutic course of action. Bully for Big Pharma (and for research based on pharmaceutical treatment protocols), but less meaningful, in many ways, to the actual sufferers. Yes, I know that patients like a diagnosis as a kind of "closure", and it is true that doctors would be irresponsible to begin harsh treatments without a clear path to some sort of remediation. Yet the bottom line is that, when you hurt, you hurt. The rest is, as they say, commentary.

I think that it is a good start that the present nomenclature does allow for many variations along several continua: Vasculitic vs. granulomatous characterization; ANCA positive vs. ANCA negative presentation; C-ANCA/P-ANCA/Atypical ANCA in any combination; and so on. There are a few normal (but not definitive) correlations, which is why certain names have a ring (but no guarantee) of certainty: Upper airway involvement is less usual for P-ANCA than for C-ANCA (as I have always had P-ANCA, this describes me); Granulomas are more associated with C-ANCA (my biopsies have suggested "vague garnulomatous formations", but nothing obvious); P-ANCA correlates more highly with kidney involvement (both correlate highly with lung involvement, though there there are fewer P-ANCA patients without lung involvement than C-ANCA patients); some sort of ANCA correlation is present in about 90 percent of those with any of the known vasculidities that we think of as "WG". Nevertheless, I am not a big fan of thinking of names as having magical powers. They are, to me, a feature of conversation. That is all.

Al

[HopeinTN]

I agree with you both. I'm just so curious about this crazy disease and thought I had an understanding until this stumped me. Nevertheless, as Al mentioned, I'm gettign the correct treatment, the rest is Alphabet Soup. It's all so weird.

I'm so thankful for wiser and more seasoned minds on this site. I would be so alone in all this without you guys.

Hugs to all!

[HopeinTN]

I had my 2nd CT scan since starting treatment Oct. 2011. I see my Dr. on Tuesday to discuss the CT and next steps of treatment. I was able to get a sneak peak at my scan and this is what I found:
Lymphatics: Conglomerate lymph nodes in the AP window measure 2.1 cm in long axis, unchanged. A right hilar lymph node measures 3 cm, previously 2.6 cm. Surgical clips are seen in the right hilum. A left hilar lymph node measuring 1.3 cm is unchanged. There is no axillary adenopathy.

Lung parenchyma and pleural space: Postsurgical changes of right middle lobectomy are again identified. A 6 mm nodule in the medial aspect of the left upper lobe is unchanged. No new nodules are seen. There is no pleural effusion.

So, If I have been on Cytoxan since Oct. 2011 shouldn't it show some change in the lung nodules? Any thoughts on what this means or what direction she may want to go. I need some help with questions to run by her for next steps. Also, why would a lymph node be getting larger?

In addition, this is what came of the CT for my abdomen:
Kidneys: Mild scarring is identified along the posterior aspect of the left kidney. No stones are identified in either kidney. The right kidney demonstrates a normal noncontrasted appearance.

Lymphatics: Small lymph nodes are again identified in the mesenteric fat; the largest identified lymph node on the examination is in the right external iliac chain and measures 6 mm in short axis.

I have had a few kidney stones that would explain the scarring in the left kidney. What's an iliac chain and what's up with these lymph nodes?

Even my lymph nodes are characterized as "fat". Just my luck. LOL!

[drz]

I think you have the right questions. Hope the answers they give you are OK too? Are you considered in remission? If so, for how long?

Lymph nodes might not be related to Wegs except as a side effect of treatment. I developed lot of lumps (possible lymph nodes I guess) in breasts and arm pits and have been evaluated several times for possible lymphoma and/or breast cancer but those evals say no cancer yet but keep checking often. Lumps are sometimes painful, especially to hard touch, and doctors think it might be just another one of the nice side effects to GPA treatment. Keep us posted.

[pberggren1]

What symptoms are you having now?

Why so long on ctx? That is scary.

What does your Wegs doc say?

[pberggren1]

Why was the CT ordered?

[drz]

I agree, Trudy. Personally, I have kind of a love/hate relationship with diagnoses, both in principle and in fact. The main reason for a DX--any DX--is to justify a certain therapeutic course of action. Bully for Big Pharma (and for research based on pharmaceutical treatment protocols), but less meaningful, in many ways, to the actual sufferers. Yes, I know that patients like a diagnosis as a kind of "closure", and it is true that doctors would be irresponsible to begin harsh treatments without a clear path to some sort of remediation. Yet the bottom line is that, when you hurt, you hurt. The rest is, as they say, commentary.

I think that it is a good start that the present nomenclature does allow for many variations along several continua: Vasculitic vs. granulomatous characterization; ANCA positive vs. ANCA negative presentation; C-ANCA/P-ANCA/Atypical ANCA in any combination; and so on. There are a few normal (but not definitive) correlations, which is why certain names have a ring (but no guarantee) of certainty: Upper airway involvement is less usual for P-ANCA than for C-ANCA (as I have always had P-ANCA, this describes me); Granulomas are more associated with C-ANCA (my biopsies have suggested "vague garnulomatous formations", but nothing obvious); P-ANCA correlates more highly with kidney involvement (both correlate highly with lung involvement, though there there are fewer P-ANCA patients without lung involvement than C-ANCA patients); some sort of ANCA correlation is present in about 90 percent of those with any of the known vasculidities that we think of as "WG". Nevertheless, I am not a big fan of thinking of names as having magical powers. They are, to me, a feature of conversation. That is all.

Al
This is a nice summary by Al of some important info that maybe ought to be filed some where else like under initial diagnosis. Thanks Al. Miss your input and caring concern.

[dennis2512]

welcome this forum has been great for me. my husband dx aug 2011. unfortunatly ctx didnt help my husband but he start rtx 2 weeks ago, soo far hes only symptom is muscle weakness which has effected hes back which was already troublesome due to a injury 30 years ago dennis is 50 yrs old. he gets very low at times feels he is a burden on the family but i try all the time to reassure him how much we all love him. unfortunately we have not been given much support we only have this forum and the internet for information . dennis has sinus and lung involvement crissie

[mishb]

Hi Crissie,

We in Oz don't seem to have the support that USA have in regards to any symposiums (sp) etc to attend or cluster type meetings.

Stick with us though and we will try to help as much as possible. I'm glad Dennis got to have the RTX.
Hopefully things will come good for him soon.
Maybe he can come on here as well for support and to know that he is not alone in his fight.

Take care of yourself and Dennis.

[HopeinTN]

The CT was ordered of the lungs to see if the CTX had made any improvement. The CT for the abdomen is becasue I recently changed urologist so all docs are now at Vanderbilt. I think she wanted to make sure there were no stones and have a good starting point (urological issues all my life). I would like to know that Wegs isn't in my kidneys as well since some symptons could be that but could also be other things (blood in urine).

I have not been told I'm in remission and they planned on CTX for 18 months. I still have pain in both lungs (my nodules are touching the pluera and it's rather painful and how we found out I had Wegs. I did not have ANY wegs symptons aside from severe pain in my chest that came on suddenly. Very lucky the way I see it. I had a CT after 6 months of treatment and showed no change in teh nodules. This is my almost 1 year follow-up (Oct).

In addition to the continued pain, I've recently started having nose bleeds and other respiratory issues. I will be seeing my first ENT in Oct. and will have a CT to make sure it's not Wegs. My last labs in June showed an elevated SED and CRP.

I go tomorrow to see my Rheumy and discuss the CT and next steps. After that I will see the urologist to discuss the CT and have a proceedure called a cystoscopy (take a peek in my bladder and make sure all is ok there- like I mentioned, I've always had issues, stones and now blood in my urine). Not too worried but not looking forward to this. Been there and done that. Yuck!

Thanks so much for the input. I too miss Al as he always said the best things and gave great advice!

[drz]

welcome this forum has been great for me. my husband dx aug 2011. unfortunatly ctx didnt help my husband but he start rtx 2 weeks ago, soo far hes only symptom is muscle weakness which has effected hes back which was already troublesome due to a injury 30 years ago dennis is 50 yrs old. he gets very low at times feels he is a burden on the family but i try all the time to reassure him how much we all love him. unfortunately we have not been given much support we only have this forum and the internet for information . dennis has sinus and lung involvement crissie

Sorry to hear that. Most of us have experience the losses that bring on many negative feelings. Many do recover enough to get much or most of previous life back. The rest of us learn to adjust to our new limitations and down sizing or downgrading of our life style. Some times treatment for depression is needed and very helpful in this process of accepting our losses. For many of the regular users on here this forum is a primary source of support and information. Only a few of us have regular access to a recognized expert in treating our GPA disease but most find a doctor or doctors that seem to have adequate experience and skill in treating us. Very few have access to any face to face support groups that meet regularly. I don't know of any active members here who say they attend such groups. Many of us here can identify with your and your husband's plight. Glad this forum is helpful and that you found us.

[Lightwarrior]

Sorry to hear that. Most of us have experience the losses that bring on many negative feelings. Many do recover enough to get much or most of previous life back. The rest of us learn to adjust to our new limitations and down sizing or downgrading of our life style. Some times treatment for depression is needed and very helpful in this process of accepting our losses. For many of the regular users on here this forum is a primary source of support and information. Only a few of us have regular access to a recognized expert in treating our GPA disease but most find a doctor or doctors that seem to have adequate experience and skill in treating us. Very few have access to any face to face support groups that meet regularly. I don't know of any active members here who say they attend such groups. Many of us here can identify with your and your husband's plight. Glad this forum is helpful and that you found us.

Good advice and I am so glad that you found us. I can honestly day that this forum has saved my life and sanity on more than one occasion. Are you seeing a Wegs specialist??

[HopeinTN]

Crissie- I hope Dennis is getting the help he needs and glad you have this forum. Do you know what lead his doctor to determine that the Cytoxan was not working and to try another med? Thanks!

[HopeinTN]

I miss Al, and not getting to share thsi with him...

My rheumy appoint went great today. Still no change in nodules in lungs, and this means it’s not getting worse. Staying on the CTX for now and will re-evaluate in December. Depending on how my ENT appointment goes next month, I may get to slowly get away from the CTX and move towards a maintenance plan. Meaning, that my nose bleeds and other issues are not Wegs related. She was adamant that we could not stop the CTX anytime soon. You can blame a gal for trying. Even though I’ve been on it for one year next month, some people just need it longer than others.

At my urology appointment today, she saw no signs of Wegs on my CT scan of the kidneys (only scarring from past kidney stones) and the cystoscopy shows that my bladder is ok. The bleeding is nothing to worry about and some people will always have blood in the urine. Also, no bladder cancer!

All in all it was a great day and my mom drove down from KY and kept me company. Let’s hope the good role continues next month!

[drz]

My doctors used to tell me during some of my worst times that if i wasn't getting worse, I was getting better. I think they meant the bad stuff had slowed down so now things could turn around and improvement would follow. It helped cheer me up during those low times. Nice to hear the bladder still looks OK from CTX meds and no apparent new damage to kidneys.

[annekat]

After being on 100mg. CTX for I guess about 9 months, my doc lowered the dose to 75mg for a few months, and then, I think, to 50mg. for a short time. I seemed to improve under that taper, with pred going from 30 to 20 to 15 to 12.5 to 10mg., which I'm on now. I expressed doubt that the 50mg. CTX was going to do much of anything, and around that time, he took me off CTX and started me on MTX. Just sharing that as a possible scenario, though our cases are different..... your lung involvement lasted longer and left more damage, it sounds like, while I have had significant sinus and ear issues, and they are still lingering, while you apparently don't.

[drz]

After being on 100mg. CTX for I guess about 9 months, my doc lowered the dose to 75mg for a few months, and then, I think, to 50mg. for a short time. I seemed to improve under that taper, with pred going from 30 to 20 to 15 to 12.5 to 10mg., which I'm on now. I expressed doubt that the 50mg. CTX was going to do much of anything, and around that time, he took me off CTX and started me on MTX. Just sharing that as a possible scenario, though our cases are different..... your lung involvement lasted longer and left more damage, it sounds like, while I have had significant sinus and ear issues, and they are still lingering, while you apparently don't.

My treatment was similar but I was switched to azathioprine since I had kidney damage and couldn't do MTX. The CTX also seemed to quit working for me about that time too and the generic Imuran seemed to work well for me. I am still on it 20 months later and down to 5 mg of pred. The CTX kept wiping out my WBC too and creating other problems too for me but it did help get the Wegs dog quieted down.

[annekat]

My treatment was similar but I was switched to azathioprine since I had kidney damage and couldn't do MTX. The CTX also seemed to quit working for me about that time too and the generic Imuran seemed to work well for me. I am still on it 20 months later and down to 5 mg of pred. The CTX kept wiping out my WBC too and creating other problems too for me but it did help get the Wegs dog quieted down. I can't really say that the CTX quit working for me at 50mg. But then I'm a small person, as my doc keeps reminding me even tho I'm a bit overweight for my height. My memory is hazy, but I think he may have actually suggested either going to 25mg. CTX or starting on 10mg. MTX. Then I really did question whether the CTX would do anything at that low dose. We both wanted to get me off CTX, so I started taking the 10mg. MTX, at first along with 25 or 50mg. MTX, I forget which, and then the MTX alone. When I first started the MTX, I got a small Wegs rash on my forearm, which went away pretty soon. Since then, I seem to be doing pretty well on the 10mg. MTX, 10mg. pred, and Bactrim 3X/wk. He talks like he wants to take me off Bactrim pretty soon and start tapering the MTX. But 10mg. is already a low dose, right? It's getting to the point where I might need a second opinion on some of this stuff, as he is by no means a Wegs specialist. Having said that, I'm happy that I've done this well under his treatment. But I just think managing the drugs will get a lot trickier from now on, as I start going into remission. I know I've talked about this before, and the fact that there aren't any real Wegs specialists around here.

[drz]

I can't really say that the CTX quit working for me at 50mg. But then I'm a small person, as my doc keeps reminding me even tho I'm a bit overweight for my height. My memory is hazy, but I think he may have actually suggested either going to 25mg. CTX or starting on 10mg. MTX. Then I really did question whether the CTX would do anything at that low dose. We both wanted to get me off CTX, so I started taking the 10mg. MTX, at first along with 25 or 50mg. MTX, I forget which, and then the MTX alone. When I first started the MTX, I got a small Wegs rash on my forearm, which went away pretty soon. Since then, I seem to be doing pretty well on the 10mg. MTX, 10mg. pred, and Bactrim 3X/wk. He talks like he wants to take me off Bactrim pretty soon and start tapering the MTX. But 10mg. is already a low dose, right? It's getting to the point where I might need a second opinion on some of this stuff, as he is by no means a Wegs specialist. Having said that, I'm happy that I've done this well under his treatment. But I just think managing the drugs will get a lot trickier from now on, as I start going into remission. I know I've talked about this before, and the fact that there aren't any real Wegs specialists around here.

Tapering off the maintenance meds will be up for discussion at my next review. Some experts argue for continuing them on a longer term basis since the evidence suggests it does reduce the risk of a flare. The risk of damage from a big flare needs to be weighed against the benefits of getting off the maintenance meds. I have lost most of my kidney function from the Wegs and diabetes so tapering off could be dangerous for me and great source of anxiety if we decide to try it. I barely survived my initial treatment when finally diagnosed and it is very doubtful I could survive a big flare that severe again. A real slow taper and close monitoring can reduce the risks somewhat but I don't know what my experts will recommend. And I wonder if they will have a consensus about what to do next and how much input I will get into the decision. It was hard enough to get into a drug induce remission and trying for a drug free one will most likely be equally or more difficult. It would be nice though to get one if one can keep it long term. But I am doing pretty good now on current maintenance dosage and willing to continue taking maintenance meds for a much longer term too if that is their recommendation.

Anne, you should be able to do a case review and consultation with one of the experts listed on Vasculitis Foundation. They can send your case summary and do it over phone or internet I think. My first one was done that way.

[HopeinTN]

Great info to have. I'm really excited to get off the CTX or at least decrease it as soon as possible. Another question, what is Hemolysis? Side effect of treatment or disease activity? Thanks!

[annekat]

Thanks, drz. Given your history, tapering drugs does sound riskier. But I haven't been on MTX that long and don't feel ready to taper it, plus I don't think quitting Bactrim is a good idea. The doc says he wants me on "as little drugs as possible" and acts like that is his motivation for wanting me to start reducing them. I'll see him in November.

Working with a specialist long distance could be an option. I am unclear on whether I could do this on my own or whether my doctor would have to agree to it, and who should initiate it.

[drz]

Thanks, drz. Given your history, tapering drugs does sound riskier. But I haven't been on MTX that long and don't feel ready to taper it, plus I don't think quitting Bactrim is a good idea. The doc says he wants me on "as little drugs as possible" and acts like that is his motivation for wanting me to start reducing them. I'll see him in November.

Working with a specialist long distance could be an option. I am unclear on whether I could do this on my own or whether my doctor would have to agree to it, and who should initiate it.

You can probably initiate it but check with Vasculitis Foundation and ask them. My treating doctor initiated my case consultations to be sure he was giving me best treatment. Your treating doctor has to agree to at least consider the recommendations and discuss it with you or it wouldn't accomplish much. i think any good doctor would jump at the chance to get a good case consultation about treating a GPA case unless they are a recognized expert too. I now see my main consultant quarterly and he sends a summary of his assessment and recommendations to my treating doctor and my local internist along with results of all the lab work I have done at Mayo for those visits.

[annekat]

You can probably initiate it but check with Vasculitis Foundation and ask them. My treating doctor initiated my case consultations to be sure he was giving me best treatment. Your treating doctor has to agree to at least consider the recommendations and discuss it with you or it wouldn't accomplish much. i think any good doctor would jump at the chance to get a good case consultation about treating a GPA case unless they are a recognized expert too. I now see my main consultant quarterly and he sends a summary of his assessment and recommendations to my treating doctor and my local internist along with results of all the lab work I have done at Mayo for those visits. Thanks again, drz. I agree with you that a doc who is not an expert should jump at the chance to consult with one, for free. This is a serious disease we are dealing with and people's egos have no place in the treatment. I can't be sure that was the problem, but when I mentioned it early in my treatment, he didn't think it was necessary. I feel I will need it more as future adjustment of the drugs will be a more intricate and somewhat intuitive process. Thanks for the pep talk.

[drz]

Thanks again, drz. I agree with you that a doc who is not an expert should jump at the chance to consult with one, for free. This is a serious disease we are dealing with and people's egos have no place in the treatment. I can't be sure that was the problem, but when I mentioned it early in my treatment, he didn't think it was necessary. I feel I will need it more as future adjustment of the drugs will be a more intricate and somewhat intuitive process. Thanks for the pep talk.

He may have delusions of adequacy for managing your GPA and not feel the need for any consultation. If so, it may help to emphasize that YOU NEED ONE for your concerns and anxiety about YOUR treatment so you feel more comfortable with your over all treatment plan. After all the focus of the treatment should be on you and your needs, right? I feel comfortable with my treating doctor because he has reviewed my treatment with two of the experts often mentioned on this forum site and one of them is meeting with me quarterly to monitor my treatment. I would feel much more anxious about my treatment if this were not the case. After all the local doctors who saw me for years almost killed me before i was finally diagnosed correctly and referred to someone who knew how to treat my GPA who is my current treating doctor. My wife would have also died from her lymphoma if she had stayed with local oncologists and not sought out consultation with experts at Mayo. The local doctors may be OK for most routine care but I think many often fail to recognize the limits of their skill and experience and are not up to date on the latest research and treatment techniques. Good luck with getting the reassurance you desire from a case consultation. It may even pay to make a trip to one of the recognized experts to be sure you get a good review.

[annekat]

Thanks, drz. Of course, you are right.

[Sangye]

What drz said. :thumbsup:

[HopeinTN]

In addition to my dr. saying that my Wegs is under control, I found out today that my labs form that appointment show that my SED rate is up to 20 (not bad, but it has been low for most of my treatment) and my CRP is up to 14.2 (which has also been down). Could this have anything to do with the nose bleeds? As I mentioned before, I will see an ENT later this month to get my sinuses checked out.

I’m just not convinced that this treatment is working if there is no change in my lungs from the CT (but, not getting worse). I’ve also started to have pain again in both lungs, similar to what started this. What do they look for in labs that would tell them that the treatment is working? I’m sure I’ve asked this before but I wanted to see what you guys thought before I emailed my dr. with questions.

Thanks!

[gunnyl]

When I made the switch from CTX to MTX my Doctor started me slowly on the MTX while still taking the CTX since it takes about 3 weeks for MTX to enter your system. At about the 3 week mark she brought me up to 20mg of MTX and stopped the CTX. I am currently on 25mg MTX although my pharmacy seems to be having a hard time getting the MTX these days. Anybody else seeing the MTX supplies drying up in their area?
GL

[annekat]

When I made the switch from CTX to MTX my Doctor started me slowly on the MTX while still taking the CTX since it takes about 3 weeks for MTX to enter your system. At about the 3 week mark she brought me up to 20mg of MTX and stopped the CTX. I am currently on 25mg MTX although my pharmacy seems to be having a hard time getting the MTX these days. Anybody else seeing the MTX supplies drying up in their area?
GLNot yet, but I'm due for a refill, so I'd better find out! I do remember something on the news a few months back about a shortage of MTX in IV or injection form in the amounts needed for children with cancer, or something along those lines. Someone else will have a better memory of that and knowledge of whether that affects us.

[HopeinTN]

At my appointment today I was really thinking that the Cytoxan (after 14 months) would be a thing of the past. Not so fast. It looks like I'll have it around until at least June. Yuck! However, I can start alternating between 100 and 5mg after the first of the year. Plan on starting Imuran in June.

Not exactly what I wanted to hear, but it's a start.

I hope all is well with for my fellow Weggies! Happy holidays!

[gunnyl]

Hope,

You've been on Cytoxan for 14 Months? And they are keeping you on it for another 6? I have somebody you should email and just ask questions if you want or give his information to your Doctor and have them contact him. His name is Dr. Paul Monarch and he is the Head of the Wegeners Research at BU. His contact information can be found here: Paul A. Monach » Medicine » Boston University (http://www.bumc.bu.edu/medicine/faculty/monach/) He is the nicest Doctor and I have given his information to my Doctors. I would ask questions.......

GL

[annekat]

GL, he even LOOKS like a very nice guy! You don't think he'd mind email questions out of the blue from WG patients? Not that we'd flood him, but good to keep in mind.

I was on CTX for about a year, though tapered toward the end. I had significant lung issues, though not as bad as Hope's (real name Nicole? Not sure.) I felt I was OK as long as I drank lots of water, and my dose was even a bit low for my weight. The doc and and I felt it was working, the lung issues cleared up nicely... could have pursued RTX but I had bad insurance and we felt I was doing well. Now have been on MTX for 6 months or so; sinus crap is still hanging in there, though better.... and the MTX dose is pretty low, too. Also Bactrim and pred throughout this whole time.

Anyway, I'll keep Dr. Monarch in mind should I need to put a bug in my doc's ear about consulting with a specialist.

[gunnyl]

Annekat,

My wife found him and she emailed him several times and he always replied. He gave me permission to give his contact information to my Dr's as well in case they wanted to consult with him since he treats many more Wegeners Patients than they do. My Dr's all combined have maybe 3 Wegeners Patients so their knowledge in treating Wegeners is not going to be on the same par. My Doctors couldn't wait to get me off the Cytoxan because of the fact that if taken over long periods of time can cause cancer of the bladder. I don't expect people to flood him with questions but if you just give his information to your Dr's and say here is a specialist who's willing to answer 'your' questions then you will do yourself a great service and your doctor too.
In truth knowledge about our Disease is limited in scope and as we all know; the drugs to treat it can be counted on one hand. So Doctors that are willing to talk to each other and share knowledge is a plus for all of us as well as our Doctors....

GL

[drz]

Annekat,

My wife found him and she emailed him several times and he always replied. He gave me permission to give his contact information to my Dr's as well in case they wanted to consult with him since he treats many more Wegeners Patients than they do. My Dr's all combined have maybe 3 Wegeners Patients so their knowledge in treating Wegeners is not going to be on the same par. My Doctors couldn't wait to get me off the Cytoxan because of the fact that if taken over long periods of time can cause cancer of the bladder. I don't expect people to flood him with questions but if you just give his information to your Dr's and say here is a specialist who's willing to answer 'your' questions then you will do yourself a great service and your doctor too.
In truth knowledge about our Disease is limited in scope and as we all know; the drugs to treat it can be counted on one hand. So Doctors that are willing to talk to each other and share knowledge is a plus for all of us as well as our Doctors....

GL

I agree with this and am grateful my treating doctor has consulted with his colleagues who are recognized experts. And he consults with my internist who treats me locally if needed. She has three Weg patients herself right now and she not any Weg expert but I like her for other issues and she consults with my Weg doctor if needed and he consults with the experts. I see both my expert and treating doctor every three or four months for evaluation and consultation and this has worked well for me. I know Phil has emailed the experts at times with his questions and I believe he has got quick responses. The ones listed at the Vasculitis Foundation seem to take their responsibility to consult very seriously and do a great job which is good for all of us. It is also encouraging to see the number of treatment centers with expertise in GPA expanding. Maybe in ten years everyone will have access to skilled treatment. Now if they can just improve the diagnostic skills of the rest of the doctors so we all can get treated earlier.

[annekat]

Couldn't agree more, drz! A lot can happen in 10 years.

[HopeinTN]

Yes, I've been on it since October 2011. While Weg's is currently in both lungs, apparently it was pretty bad once they diagnosed it. So far, it has not gotten worse but no real change in the spots on my lungs and surrounding lymph nodes. My doctor is at Vandy and has access to many specialists and brilliant minds. I feel this is ok for now since nothing is getting worse. My kidneys look good as does my sinuses. I drink plenty of water and even had my bladder checked out recently.

I meant alternating between 100 and 50mg at the first of the year.

[Sangye]

There is no justification for keeping you on ctx for that long. If it hasn't gotten the Wegs into remission by now then it isn't the right drug. Vanderbilt is a fine institution but they aren't Wegs specialists. Prolonged use of ctx like that is putting you at a ridiculous risk for cancer. Why haven't they tried rtx??

[JeanMarie]

I'm with Sangye on this. I've no medical training but virtually all specialists are in agreement that this is too long.

Be Well!!

[Jaha]

My weg's specialist from Cleveland Clinic, only would allow me to be on ctx for 6 months, then did a ct scan to see what was happening in both lungs. She then moved me to cellcept with rtx infusions 3 months later. I have had improvement, but so new sites started up. I am having my second round of rtx right now, I asked her about going back to ctx and she did not like that idea at all.

[HopeinTN]

I'll mention it to her again today in an email. My labs from my recent visit are mostly ok aside from my SED rate of 36 and CRP at 20.5 (still not bad), but this can be so many things.

Should the CTX make the granulomas go away? They are not going away, but not getting any bigger.

Sangye- Can you give me a few questions that I can ask my dr? I know seeing a specialist would be ideal but my Dr.'s and Vandy say I'm doing great. Also, I'm a single 40 year old that has to work to pay the mortgage...and traveling to XYZ to see Dr. XYZ would be a huge expense. I have no idea where I would find the time to pull all the info a new Dr. would need.

I haven't been feeling bad but I did fall down some steps on Christmas Eve and aside from bumps, bruises and a crushed ego, oh, and a carpet burn between my eyes), I survived. Until about 5 days ago, when I started having tingling on the right side of my face in a few different spots. It's not a stroke, but maybe nerve damage or what I think...Shingles. Can you have shingles on the face with no spots, from a bump to the head?

THANKS GUYS!

[jola57]

I was on ctx for 18 months, first for 6 then a month and a half later they put me on another 12 month course.
now I've been in mtx for 3.5 years

[JeanMarie]

Dear Hope,
Shingles comes from the chicken pox virus--if you had chicken pox the virus sort of hides in your system & can cause shingles later in life. I don't think it will have anything to do with your fall. You should see a doctor quickly--if you do have shingles it has to be treated early or the drugs won't be as effective. Really I think you should have this checked out--don't wait!!!!

[HopeinTN]

My PCP had me go to the ER and get checked out and to make sure it wasn't anything serious. I did have my first shingles outbreak this past summer, so I know the feeling. No breaks, and yes, I started treated for shingles. I'm rare and lucky in that mine haven't been that painful (no rash this time), just an annoying pin prickly feeling on the right side of my face at several different spots. If this treatment doesn't work it may be a damaged nerve from the fall.

So far, I'm on day 3 and it does seem to be getting better.

[annekat]

Shingles sounds just awful. I guess many of us who are baby boomers had chicken pox. My sisters definitely had it and I may have had a very mild version, not nearly as many pox. Maybe just pimples, not sure. I have had type 1 herpes (cold sores) all my life.

I hope you or anyone else on here who get shingles ends up with a relatively mild, treatable case!

[Sangye]

I'll mention it to her again today in an email. My labs from my recent visit are mostly ok aside from my SED rate of 36 and CRP at 20.5 (still not bad), but this can be so many things.

Should the CTX make the granulomas go away? They are not going away, but not getting any bigger.

Sangye- Can you give me a few questions that I can ask my dr? I know seeing a specialist would be ideal but my Dr.'s and Vandy say I'm doing great. Also, I'm a single 40 year old that has to work to pay the mortgage...and traveling to XYZ to see Dr. XYZ would be a huge expense. I have no idea where I would find the time to pull all the info a new Dr. would need.

I haven't been feeling bad but I did fall down some steps on Christmas Eve and aside from bumps, bruises and a crushed ego, oh, and a carpet burn between my eyes), I survived. Until about 5 days ago, when I started having tingling on the right side of my face in a few different spots. It's not a stroke, but maybe nerve damage or what I think...Shingles. Can you have shingles on the face with no spots, from a bump to the head?

THANKS GUYS!
Do you mean questions to ask a new doctor or your current ones?

I suggest you find a chiropractor who does craniosacral work. After that fall you need to get your cranial bones adjusted, as well as your entire spine. A bad fall can cause dormant viruses to activate. We see this all the time in chiropractic.

[HopeinTN]

Sangye- yes, my current dr. Thanks for the heads up on the chiropractor.

[pberggren1]

My mom fell out of my brothers truck back in July of 2011 and she still has issues regarding that. I could never convince her to go see my chiro. She is afraid of the cracking.

[HopeinTN]

I'm not keen on the cracking part. I actually feel nausea when I hear someone crack their neck. I'm still not sold on it but worth thinking about and looking into.

[Meredith]

I was on the same medicine for at least 2 years, might have been longer than 2 years. Worked full time. Yes I was tired some days but learned either I work or keep a clean house. I am usually in bed by 8:00, maybe not sleeping but resting. Approx. 1-1/2 years ago my doctor put me on Rituxan (still on 5mg pred and bactrim). Has worked wonderful. The reason for changing my meds is I started getting bad blood results. white vs red blood cells. Once I got off of the cytoxan everything came back to normal. It did not stop me from doing anything. I cruise, go to Disney all the time (can't walk like I use to there though, used a wheelchair for 9 days though because I did not want to get tired and we were at the park from 9AM - 12 midnight most days). I even traveled to India for business last March for 2 and 1/2 weeks. I have had wegeners for 8 years now. My number one complaint - the weight gain.

[HopeinTN]

I'm glad to hear how well you are doing and that you survived long term Cytoxan use. I had rough days in the beginning but other than being tired and the weight gain, it hasn't been too bad. There were a few bad times in between but it's looking up. My test for Imuran showed I could take it, and that's the next step, hopefully in June.

Thanks for saying hi!