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Sangye
07-15-2009, 06:24 AM
I just started back on oral cytoxan last weekend. What a little pleasure ride, huh? The last time I was on it, I was also on serious pred, so I know it masked a lot of the ctx symptoms for the first several months. When the pred was lowered, the ctx side effects became more evident.

I've had a lot of nausea since starting this time. It usually takes about 7 hrs to show up, though. Today was the first time I woke up with it and it hasn't decreased all day. Peppermint tea did nothing this morning.

I talked to my doc and he said to decrease the ctx dosage for the next few days--that maybe I need to start it more slowly. I'm trying not to decrease the dose, since we're barely keeping the Wegs at bay right now.

What kinds of things have you guys tried for it?

andrew
07-15-2009, 06:30 AM
Ginger tablets. Can't recommend them highly enough. I take a couple when I have nausea and within 20mins it's smooth sailing.

Luce
07-15-2009, 06:41 AM
I'm not sure which I loathe more to be honest, pred or cyclo,

The nausea for me was always about half an hour after taking it in the morning and lasted until about lunch time.
I never really tried anything for it, just put up with the churning until it very gradually subsided each day.

What dose are you on? I started at 200mg which made me very anaemic, then we dropped to 150mg which was fine for a while but then it started causing havoc with my bladder. I finally felt ok at 100mg, but at that point things were starting to improve so we could risk the lower dose.

I hope you find something to ease the ickyness...

Sangye
07-15-2009, 06:57 AM
I'm on 150 mg. Based on weight (we're talking cattle scales here) I should be on 200 mg. My doc said it's a close call. I'm sure they must want to chuckle sometimes, at just how big we Weggies can get. Sometimes I feel like Big Momma in that movie!

Luce
07-15-2009, 07:04 AM
The renal dietician at my clinic insists on commenting on my weight and trying to help me lose it. I have almost lost patience with her when trying to explain the side effects of pred - unless I am to starve and spend 8 hours a day on a treadmill I don't think this woman will be happy with me.
Her solution? Either medication (Alli/Orlistat) or gastric band surgery! She just doesn't get that I can't really risk either of these options when progress with the wegs is going so well.
She is very frustrating and is obviously not happy with my 3 gym sessions a week and step aerobics. I would be happier to take her advice if she were not as tall as she is rotund - it just feels hypocritical.

Sorry rant over, this was the only disappointment in my day today.

Sangye
07-15-2009, 07:14 AM
You'll probably never satisfy her or get her to understand what it's like. Personally I don't think anyone can fully understand what pred is like if they haven't taken it. They also think if you're on lower doses or off it, that your body goes back to normal. I've been off it for 2.5 years, and my body shape is still completely different than it ever was before. It isn't just the weight--I'm actually shaped differently, as if I'm still on it.

With people like that I tend to expend lots of energy explaining over and over, trying to get them to see it. All it does is exhaust myself. So now I remind myself to just look at them, smile, and say something like, "Yeah, that's good to know." I just give them the same blank stare they give me. Stops them in their tracks every time, and I don't get all stirred up over it.

RCOSSIO
07-15-2009, 01:15 PM
Sangye,

I know you flared and that is why you had to go back on Cyto...but my question is what happened to Cellcept,,,I know you had been on it for 2 yrs, did it stop working for you?

Secondly, why 150mg is that too little, I started on oral Cyto at 150mg when first diagnosed and my height and weight was 6'4 and 255, and yes I gained 10lbs because of pred. Darn:(

Thirdly, I started Cellcept 2 months ago so far so good, but do you think long term that our BFF comes back or is this an anomaly due to Wegs being so systemic?

Anyway hoping for your revival and your Cyto being replaced again with Cellcept.

Sangye
07-16-2009, 12:41 AM
Richard,
My Wegs doc said Cellcept was working great for me. It needed to be increased in Feb/Mar but it wasn't obvious until now. I was on 2,000 mg/day of CC for over 2 yrs, and we had just increased it to 3,000 mg about 7 weeks before my lungs started bleeding. He says if we had increased it sooner, it would have been enough to keep the Wegs in check right now--ie, we'd never need to do ctx. He hadn't wanted to increase it sooner--it really wasn't clear at all that it was Wegs. The other day he told me (about my Wegs case), "Nothing about you is black and white. Everything is gray." Stinkin' gray....

Why only 150 mg? He's extremely conservative about using ctx and higher doses of pred. A lot of his research is about the overuse of those drugs, and how patients get into more trouble (or die) from the drugs than from the disease. He also thinks we're catching the Wegs before it's a full-blown major flare, so we're able to use the lower end of the dose.

Anomaly vs Inevitability : I think it's all individual with Wegs. I think Cellcept is great and is fully able to keep Wegs contained. He thinks so, too, and the plan is to do 3-6 months of ctx and then switch me back to the 3,000 mg CC. It's also entirely possible to get the Wegs under control to the point that no drugs are needed. It happens.

It's funny how everything changes. I never thought I'd be counting the days til I could go back on CC. When I first had to go on it, I had a MAJOR hissy fit. Major.

RCOSSIO
07-16-2009, 12:41 PM
Yes...when I first went on meds the most I had ever taken before was aspirin or allergy medicine...so i hear ya about taking chemicals that your body was not meant for...but can help us through this WG grind.

Anyway...looking 4ward to getting you back on CC.

germaine
07-17-2009, 12:00 AM
So glad to have you back and sounding fiesty. Bummer about your set back. I am frightened about giving advice to someone who knows a whole lot more than I do about all this stuff, but I wonder if you ever tried the zone diet. I have ALWAYS struggled with my weight, and you know how helpful the pred is. Anyway I managed through my two cycles of 60 mg to only gain 5 lbs, and have actually finally got that off since I am now down to 12.5 mg.

I am on procytox 150mg a day. I take it with food and water. I get kind of queasy if I don't eat enough with it, but usually no effect at all. I think this is just a brand name for cyclophoshamide, so it might be the same thing. These seem to be nicely coated pills that slide down well. Maybe you are saying "yes, yes, I know all that", but I thought there might be a useful crumb here somewhere.

Sangye
07-17-2009, 12:51 AM
Hi Germaine,
LOL--Please don't think I couldn't benefit from some advice! It's very easy for me to miss obvious things, especially when it concerns my own body.

Yesterday my doc said to reduce the cyclo to 100 mg. After continuing pain, today he said to lower it to 50 mg. When I took ctx in '06, I increased it slowly. Hopefully this will be fast enough to get the Wegs under control. I've never seen a coated ctx....

The Zone diet is very good for certain constitutions. It has certainly worked great for you! With my constitution, I'll lose weight for a couple weeks, then will actually start gaining. Within a month, I'll get sinus headaches, constipation, irritability. In Ayurvedic medicine, this is a typical response for a Kapha constitution. Many years ago Oprah--who is also Kapha-- tried such a diet. I wrote her and suggested she ask her friend Deepak Chopra for his Ayurvedic opinion. She stuck it out, and within a month was miserable with the same symptoms.

The way we react to pred also has a lot to do with our constitution type. Pred is considered "cold" in Eastern medicine. Kapha is already cold, and adding more cold causes a lot of weight gain. Pitta constitutions are most benefitted by a zone diet. Pitta is hot, so pred typically causes the least weight gain for them.

For me, physical activity is very important when it comes to losing weight. Not being able to exercise at all for 3.5 yrs has been disastrous for me. My doc thinks the ctx will get the Wegs under better control than it's been for months, and in the end may actually strengthen me. I sure hope so!

Jack
07-17-2009, 02:05 AM
Sorry to hear you're having to juggle with your treatment Sangye. Its the old problem of the "best" medication also being the most toxic. Hope you soon get it all back under control again.

germaine
07-18-2009, 01:55 AM
Yes! LOL, I have never even heard of Ayurvedic medicine. For me the Zone diet was the magic bullet after gaining weight even at 1200 calories a day years ago, and on practically any other diet. I'd given up any hope of controlling my weight. My daughter (who is much better informed), tells me all bodies are not the same, well I believe her.

germaine
07-18-2009, 01:59 AM
ps HOW is it you post your pictures? Give me a refresher, I think Jack told us but I still didn't feel good enough to care. non techy language please. Thanks Germaine

Jack
07-18-2009, 02:26 AM
See - http://www.wegeners-granulomatosis.com/forum/general-chit-chat/214-how-insert-pictures-into-post.html

Sangye
07-18-2009, 02:28 AM
Germaine, do you mean your pic for your avatar?

Jack
07-18-2009, 03:07 AM
Good point. :)

Go to UserCP at the top of the page, then select Edit Avatar from the menu on the left.

Doug
07-19-2009, 12:47 AM
Ginger tablets. Can't recommend them highly enough. I take a couple when I have nausea and within 20mins it's smooth sailing.


Ginger is great! Alternatively, ginger ale might help some with milder nausea.

Sangye
07-20-2009, 01:00 AM
Do any of you get tinnitus while taking oral cytoxan? It's pretty bad by each night. I was at a public gathering yesterday and felt I was having a harder time hearing than usual. I'm gonna ask my doc about it, but I figured I'd collect a little data first.

Jack
07-20-2009, 01:34 AM
Yes, I have tinnitus all the time which I associate with the fluid in my inner ear. I'm currently waiting for grommets to be fitted, so perhaps I'll find out if this is really the cause.

jeriorleans
11-08-2009, 03:29 PM
Does anyone having burning when urinating while taking Cytoxan?

Sangye
11-08-2009, 04:02 PM
That isn't a normal side effect. It sounds like your son has a UTI. Please get it checked out asap. Having any infection while on immunosuppressants can be dangerous. In 2007 I developed a sudden UTI that spread into my kidney within one hour, believe it or not. I was lucky to have the right antibiotic on hand.

onatreetop
11-08-2009, 04:22 PM
I had it bad after nuc testing and Litho.. Asked the urlg. if it was normal after he said yes and now it has been over a month and I still have it. He is still saying its normal.I made an apppointment with my ob/gyn sometimes they are the best to think about a womans parts. I have also had the blood in my pee since before I was Dx'd with WG. It was one of the Wg's hints that is still there. Haven't figrured that one out yet. The kidney function was fine and ultrasound only showed the stones that are no more.
Get it checked out. No one should have that is long.

Sangye
11-09-2009, 01:03 AM
It might be normal after passing a kidney stone, since they can injure the tissue on their way out. A month is a long time, though for sure. Sounds like a low-grade UTI.

jeriorleans
11-09-2009, 02:35 AM
could it be from not drinking enough water?

Doug
11-09-2009, 07:52 AM
I'm with the suggestion to have your son see a doctor as soon as you can. Infections need to be addressed as soon as possible. If it isn't an infection, you need to know that too. I'm with Sangye and onatreetop, though: for the duration, it sounds more like an infection. Is there a strong smell associated with it and is the urine milky? That's another clue. Regardless, see your son needs to see his doctor!

Sangye
11-09-2009, 09:34 AM
could it be from not drinking enough water?
I don't think so. The reason for drinking lots of water while taking cytoxan is to keep it from sitting in the bladder-- future risk of bladder cancer is much higher. It would be painless if it sat there.

onatreetop
11-11-2009, 10:43 PM
his might sound bad but.......................what time of day are you taking the cyt. if you are taking it at all? The presp. says once daily thats it. No am or pm? I have been taking it in the pm in fear of stomach issuses. That way I might sleep through it?:o

RCOSSIO
11-11-2009, 10:58 PM
When i was taking cytoxan..it was suggested i take it all in the morning as it would be better to not sleep overnight with the waste in your bladder.

Since i drink 120-140 oz of water a day...i could see the benefits of taking cytoxan in the morning while flushing away the waste during the day.

Jack
11-11-2009, 11:00 PM
I prefer to take the more toxic stuff in the morning when my system is more active rather than it hanging around stagnant at night. This is based on no scientific information what so ever! ;)

onatreetop
11-11-2009, 11:03 PM
That makes sense. I do drink water all day and night too. Like I said I was trying to avoid feeling the side effects if any during the awake time. I will change it to the am pile of meds. Thank you for saving my bladder!!!

Sangye
11-12-2009, 02:30 AM
PM is not a good time to take ctx. I was told you have to drink the tons of water and pee every time you feel anything in your bladder (ie, don't just wait for it to be full). Get the ctx out of the bladder as fast as possible.

My first time on ctx I was told to take it in 3 doses (50mg, 3x/day). My Wegs doc here said take it all at once in the morning. My stomach couldn't tolerate it, so then he said split it into 2 or 3 doses. He said it doesn't matter as long as you take the entire dose in one day. The "all in the morning" recommendation is just so you won't be up peeing all night.

onatreetop
11-12-2009, 07:56 AM
Okay, I will not take it tonight and will take it in the am. Just left the prim. docs office with my 14 year old. Flu, swine flu. The high school is making them stay home for the week that they get it regardless for fever gone 24 hours or not. The rest of the school district is going with 24 hours fever free to return to school. My daughter went back today. Now I am in it and a bit scared. There is a clinic thursday afternoon for the vacs but it takes 14 days to work so............how is that going to help me? Not sure once again what to do?

Sangye
11-12-2009, 08:18 AM
There isn't going to be an easy answer for this. I think you'll have to just make the best decision you can with the facts and info you have, and then don't look back.

onatreetop
11-12-2009, 08:21 AM
Oh fudge nuggets!!!!! My husband isnt feeling well either.I 'm done for I know it. They have me surrounded!!!! I should have a party!!!!Just kidding. PJ's and a mask may be better to wear? Get sick while having fun, yeah thats the ticket.

Sangye
11-12-2009, 08:26 AM
Mmmm...fudge nuggets.

onatreetop
11-12-2009, 08:55 AM
That 's what I say instead of F......in sh..........! Changed that after I had my first child. Sorry and I aplogize for the french!!

Just called the RA and asked what do I do? Mask it or leave asap? What I should do? Waiting for the return call.

elephant
11-12-2009, 11:54 AM
My doc gave me tamiflu just incase one of my children gets it. I am not even thrilled to take the drug. Just one more pill.:D

Jack
11-12-2009, 06:12 PM
I've never heard of Tamiflu being used as a prophylactic against possible infection. In fact, there is a debate about how effective it is anyway with the possibility of side effects outweighing the benefits.

elephant
11-12-2009, 10:33 PM
I have the Tamiflu on hand incase my kids/husband get the H1N1 flu. Of course if I get the H1N1 flu I am suppose to take it within 48 hours. It is suppose to lessen the symptoms of the H1N1 flu. My friends daughter had the H1N1 flu and they put the whole family on it. She said it worked. But it does have alot of side effects.

onatreetop
11-12-2009, 11:31 PM
The doc said to call and they will send it in for me if I need it. They don't seem to worried about the kids now it is me they are afraid for. My RA is going to call after 10am with his suggestion and I will share the info. after I get home from work today. It is better to be away from hear than sitting in it. Lysol'd everything we touch last night. twice. so................just waiting to hear. The vac clinic is tonite in town from 4-8pm but...it is also stroming here pretty badly. Mom passed on the idea for going and waiting in line and strom.

Just to keep me on topic, I took my cyt. this morning for the first time. I am so excited. Here comes the warmth from the pred.. Time to get on the eliptical. I lost five pounds of water the first 24 hours sweat,sweat ,and more sweat.

MCC
01-25-2010, 02:13 PM
Did many of you experience hair loss with cyclophosamide?

My nurse warned me it's a possibility. I'm having IV cyclo every two weeks.

moyan
01-26-2010, 12:43 AM
Hi, I lost quite a bit of hair, not handfuls but one by one, so, I croched(hook and yarn) bandannas to make them look at that instead of lack of hair, but I looked like a mature Goudacheese so never used :)

Sangye
01-26-2010, 02:32 AM
ROTFL with your "mature goudacheese" description, Moyan! :D :D

Mandy, most people don't lose all their hair on the doses of ctx we take. It usually thins out quite a bit, though that depends on the dosage and how long you're on it. It usually grows back in once the ctx stops. Chemo also changes the curl of it. Wavy hair tends to get very curly. That change is permanent, reflecting the DNA that's been mutated.

If the ctx induces menopause, that alone changes hair growth patterns body-wide.

Pred also alters hair growth patterns all over the body including the head. Often these changes are permanent, reflecting the endocrine imbalances it causes.

MCC
01-27-2010, 01:20 PM
:D :D :D That made me laugh Moyan.

Not very fair really is it to thin on top and end up with a hairy chin :(

Sangye
01-27-2010, 01:30 PM
You should see the bizarre hair growth pattern on my shins. It happened while I was off pred for 2.5 yrs. The front of each shin has extremely long (over 1 inch) dark hair in a thick patch covering the entire length of my shin. It looks exactly like someone glued a 3-inch wide strip of fake fur on my leg. The rest of my lower legs have almost no hair-- not typical for me before Wegs.

None of my docs can explain this weird hair growth. None have seen it before. They all just say "Must be the steroids" but have no idea why it began while I was OFF steroids. (To me, it's proof of the adrenal disruption the pred has caused) They've each gasped when they've seen it. Well, thank goodness for razors. No more gasping.

elephant
01-27-2010, 09:45 PM
Prednisone gave me some really nice eye lashes, bushy eyebrows..... I stil have to pluck eyebrows everyday. It's like the grow over night!

JanW
01-28-2010, 08:23 AM
I had my appointment with Dr. Yee at Hospital For Special Surgery today. He confirmed (as he had over the phone) the WG diagnosed and showed me the specific blood work (ANCA and P-something, I forget now). He also said that while he had treated many WGs himself he would be working closely with Dr. Robert Spira, who is spearheading some clinical studies of WG at HSS. The medication regimen for me is as follows: ultimately 10 mg/week of MTX. I start with 4 mg next week (I'm going to do it every Tuesday) for two weeks -- this is not an effective dose, but will be merely used to make sure I am not allergic to it. After that we will increase to 6 mg/week for two more weeks, 8 mg for two weeks and finally 10 mgs. If well tolerated and clinically I stay stable, I will remain on that for at least six months with no change before he would declare remission. He said that the decision not to start with any pred was because I have no acute symptoms that means that my inflammation doesn't need to be managed very quickly, and that he believes that not only is the MTX better tolerated but also much less toxic over time. He believes docs underplay the toxicity and side effects of pred in an effort to put out the inflammation very quickly (and obviously there are very sick patients that need this to happen). I will be monitored every 2 weeks for many months, with blood draws, UA and physical exam, once I become a "regular" patient will see him every six weeks over the long term. He believes that my disease could easily have been quiescent for many years, and really that the discovery of it was just a coincidence because of my foot issues (for which he says, ironically, I should just get steroid shots)! So I'm relieved. He says that the SS has to be fixed before remission regardless and that the saddle nose could wait (which I knew anyway, and which I may not fix). He also adds that one can drink on MTX, as long as you space it away from your dosing day. He has given me folic acid to take daily to ward of nausea, which seems to be the most common side affect. He may want to add Rituximab to the mix at some point, since he says that new research is showing that when combined with mtx it seems to be very effective.

elephant
01-28-2010, 08:33 AM
Thanks JanW for the information...and update. Sounds like you got it covered. Good for you!

Sangye
01-28-2010, 08:36 AM
Jan, that's good news. I'm happy to hear Dr Yee taking the toxicity/side effects of pred so seriously. The Wegs specialists understand that, but the non-Wegs rheumys generally have no appreciation of it. Like you said, for many of us there was no option but high dose pred.

And no ctx, either. Wow, that's just amazing! You have no idea how skipping the pred and ctx and having no active Wegs will make this whole thing much more tolerable. No comparison, really. I'm happy you have a good plan.

JanW
01-28-2010, 08:47 AM
Believe me, after reading this boards I "know" but can't actually "feel" how lucky I am. We both think that I have active wegs however, but just asymptomatic, so I'm very glad that Yee considered whether the "cure" would be worse for me (lifestyle wise) than the disease. He really believes that in me the disease doesn't progress very quickly. I'll just have to gear myself up for the surgery -- possibly more than one.

For what it's worth, he doesn't treat with ctx unless he sees kidney involvement. That's his line in the sand. He called it a very serious drug, very toxic, poorly tolerated. On the other hand, he said that no one gets through rheumo residency without knowing mtx like the back of their hands. You would think that more rheumys would prescribe it then for Wegs, wouldn't you, since it is apparently what they are giving to many of their RA patients? Maybe there is a a fear of undertreating such a rare disease, though, and really feeling as though you would have nowhere else to turn if you weren't a specialist. I was even surprised going through thhe mtx thread just a little that some people here were started on a much higher dose than me.

Sangye
01-28-2010, 09:00 AM
Hmmm. The part about not using ctx unless there's kidney involvement made me stop in my tracks. That isn't standard of care among Wegs specialists. When my lungs started hemorrhaging again last summer, my Wegs doc said neither imuran, mtx nor Cellcept are effective in stopping alveolar hemorrhage once it's begun. I have no kidney involvement. He said the only treatment for alveolar hemorrhage is ctx or rtx along with pred.

Mtx is used to maintain remission for large numbers of Weggies, but is generally not strong enough to induce remission, especially without pred. RA is a very different pathological process and is not life-threatening. It also doesn't do silent damage. I don't mean to downplay RA at all-- it's a horrific disease. It's just comparing apples and oranges.

Jack
01-28-2010, 09:04 AM
He really believes that in me the disease doesn't progress very quickly.
Be careful, this is a nasty, sneaky disease! After 18 months of misdiagnosed trouble my symptoms had settled down and I was working and not feeling bad. I went from that to being at death's door in the space of two weeks. :(

JanW
01-28-2010, 09:21 AM
I guess we will have to see, won't we? I am getting a chest CT tomorrow, bone density scan next week, and am going to see this doctor twice a month for the foreseeable future where I will have labs run, a physical exam, and a check for any new symptoms. Considering that I have likely had the stenosis dating back to 2005, and the saddle nose for at least six months without other symptoms, he is obviously making an educated guess that my progression is slow, but it's only that, obviously, a guess. I suppose that if I was feeling quite unwell I would want to quell the inflammation quite quickly, but I don't see the need for that, particularly since remission or not I have the surgery. He feels that the inflammation is not so severe that it needs to be quelled in order for the immunosupressive to actually be effective.

I aprpeciate that all of you have been dealing with this much longer than I have, and I also appreciate that one needs to get this disease under control quickly, but I do trust this doctor and his team which has treated more than 100 WG patients, which we all know is a lot for such a rare disease. He did explain to me, several times, that this disease could attack any organ at any time, which is why I would be constantly monitored.

Sangye - I wasn't trying to say that RA and WG are similar, obviously, only that mtx's properties are well known because it's so widely prescribed.

elephant
01-28-2010, 09:34 AM
JanW my sister is on methotrexate for her RA , I think the dosage is 20 or 25 mg a week. She also taking another immunosupressant drug. Her's is severe. My Rheumy would not give it to me, but I am a different breed. Had this over 30 years.... long story.
I am glad you are being monitored closely. It is so sneaky it got me bad last year, Rheumy thought I was ok and it turned on me less than two weeks.

JanW
01-28-2010, 09:39 AM
Thanks. This doc basically said that the further we will ever go between appointments is six weeks, and it's every two weeks for months, so I'm comfortable with that. Luckily I don't have to travel far (less than 30 minutes with NYC traffic) or wait for hours like I have read that some of you do.

Sangye
01-28-2010, 09:41 AM
Jan, I know you weren't comparing Wegs and RA. I was only addressing your question about why mtx wasn't used as much for active Wegs as it is for RA.

Even under the excellent care of a Wegs doc, my current flare took months to be diagnosed. We're just being super-protective of you!

JanW
01-28-2010, 09:43 AM
Understood, Sangye! According to the VF website, cytoxan is used for kidney involvement AND "severe" cases of WG, so I'm assuming that yours falls into that category. My doc just probably used kidney involvement as shorthand for talking about how he treats. It's the lack of the use of pred that appears more unconventional and my husband and I definitely questioned him about that.

Sangye
01-28-2010, 09:57 AM
I'm not terribly surprised by the lack of pred. My Wegs doc didn't put me on high dose pred with this last flare. Even though my lungs were hemorrhaging and I was in bad shape, I wasn't in critical shape like back in 2006. He felt I had just enough time for the ctx to take effect. He wanted me on 20mg pred for the first month of ctx, because it takes a month to start working. I didn't even take that much and he was okay with it.

elephant
01-28-2010, 12:17 PM
So why do so many start at 60mg?

Sangye
01-28-2010, 12:23 PM
So why do so many start at 60mg?
Because the inflammation factor is so high for most initial cases and for so many flares. When I was first dx'ed, my lungs were massively bleeding. They did 1,000 mg IV solumedrol (1,250 mg pred) because my inflammation was through the roof.

It's very individual, and this is when a Wegs specialist is necessary to make the call. The regular rheumy's who consulted while I was hospitalized last summer wanted to start me on 80 mg pred. They were excellent rheumys, but not Wegs docs.

JanW
01-28-2010, 12:28 PM
That's my question too -- seems to be the default for almost everyone on here -- 60 mg is the starting point, combined with cyto.

Sangye
01-28-2010, 12:33 PM
LOL--Jan,I think we posted our replies at the same time.

60mg pred and ctx are the standard of care for active Wegs that is life-threatening. Using less powerful immunosuppressants or lower doses of pred have not had good results. Of course,the new rtx research turns it all on its head.

elephant
01-28-2010, 01:07 PM
Thanks again Sangye. I had the pleasure of being on high doses of Prednisone many times...

MCC
01-28-2010, 01:27 PM
Is cytoxan just another name for cyclophosamide? Or does cytoxan refer to the drug in tablet form?

I am having cyclo every two weeks via IV.

RCOSSIO
01-28-2010, 03:00 PM
yes Ctx and Cyclo are the same.

Sangye
01-28-2010, 03:08 PM
Elephant, being on high-dose pred once is a nightmare. Multiple times...you have my sympathy.

Jack
01-28-2010, 06:09 PM
I was on the same dose of pred as Sangye when first diagnosed, I think they only use these levels when you are in really bad shape! Oddly, I had none of the problems associated with high doses (not that I was aware of anyway) and it just took away my symptoms and made me feel better. I could not understand why they would not let me out of hospital.

Sangye
01-29-2010, 02:51 AM
Jack, I bet they just kept you there for your sense of humor.

Jack
01-29-2010, 05:46 AM
I think they kept me on as unpaid staff. I felt so well most of the time that I started helping out. What I did not quite take in at the time was the extent of the damage that had happened to my body although the doctors did try to tell me. I think the high dose pred was damping my bodies reaction so much that I was not aware of it.

Sangye
01-29-2010, 08:03 AM
LOL-- that reminds me of Luce's story about when she was first hospitalized. She was in kidney failure and bringing tea to the others in her unit. :D

Jack
01-29-2010, 08:24 AM
Yes, that was me too!. :)

Sangye
01-29-2010, 09:57 AM
It shows how kindhearted both of you are. Some people wouldn't do that even if they felt great!

Doug
01-31-2010, 08:39 AM
Gad! After I got to University Hospital-Denver, they had me in the transplant ward in a private room where visitors wore moonsuits and face masks, except during a spell where I had diarrhea* then I wore the moonsuit and face mask when I was transported to various parts of the hospiat l for various treatments and biopsies.

In fact, once I was hospitalized in my hometown with a high fever, difficulties breathing, heart issues, but before I was diagnosed four days later, until I was let out of UC-Denver Hospital, I was isolated from the general population. Except one brief time, when the regional hospital people had the idea I was without insurance and put me in a double with an elderly man with diarrhea bouts once an hour, on the hour! I answered the shared phone for him, and no doubt caught diarrhea by that means, the bout of which travelled with me from that hospital to the oine in Colorado. Incredible how the uninsured are treated! (Which, as far as that hospital was concerned, their billing department anyway, was what I was: uninsured, though I in fact had insurance that covered every penny after the first $1250, which I reached sometime the first day I was hospitalized!)

germaine
02-02-2010, 02:06 PM
Hi Mandy, I did experience thinning, but not REAL bald spots. I did get a little innovative trying to comb it in ways that didn't make the thinning quite so noticeable. Oddly enough it occured on the pills, not the IV, but maybe that was delayed reaction. Apparently grey hair is less inclined to fall out, so maybe that helped me. I hope yours is not worse than mine. Just another blip on the journey.


Did many of you experience hair loss with cyclophosamide?

My nurse warned me it's a possibility. I'm having IV cyclo every two weeks.

Jack
02-02-2010, 06:14 PM
I think I did lose some of the hair from my head when on cyclophosphamide, but at about the same time, general body hair increased. The effects were not dramatic and I had other things to worry about at the time! Being bald and male, it was hard to tell what changes were just age related.

moyan
02-25-2010, 09:15 AM
Hi, my biggest problem with the chemo was the hairs falling down on my back and itching my patience out of me!

MCC
02-25-2010, 11:50 AM
I don't seem to have lost any hair yet, apart from what I normally would do. I just had my fourth cyclo IV today.

jola57
02-25-2010, 06:23 PM
I was on pills and my hair thinned but curled, I have a free perm that lasted now for 3 years

elephant
02-25-2010, 10:36 PM
I use to have beautiful thick wavy golden brown hair. In the last two years I have more gray then color, I lost half of my hair, half of my hair is crazy curly and the other half straight. I really look like the guy from the movie ( the one with the blond wiry hair) , " Dumb and Dumber". People tell me what I need to do with my hair. I went to the salon to get it colored and cut, there must of been five beauticians in there giving me advice on how to tame my ugly hair!

onatreetop
02-25-2010, 11:18 PM
Hello Everyone!!! I decided with all the sweating that it was time to go from long middle back lengh hair that was keeping me hot to short. I had cut first to shoulder then above the neck and now short. Can see half my ears. It got curly andnow its is a wispy due naturally. I love it!!!! Wash it brush it mess it up and let it air dry and I am done. So easy and everyone says it looks great. I did have very thick hair to begin with. The other hair that is appearing I could do with out. Like the peach fuzz on my face and neck. If I shaved it I bet I could grow a better bread than my husband!!!!!

moyan
02-26-2010, 12:20 AM
"Apparently grey hair is less inclined to fall out, so maybe that helped me. I hope yours is not worse than mine. Just another blip on the journey"

Why did I ever dye my hair? Would have had it all if not!

Sangye
02-26-2010, 01:25 AM
Onatreetop, I'm so happy for you that you found a way to feel better emotionally and physically by cutting your hair.

My docs questioned when I said 4mg pred is like 40 mg to my body, but when I developed peach fuzz all over my face within a week, they agreed with me.

You can use a dry razor on it, just lightly sweeping it. It won't grow back thicker-- that's a myth. Don't use those depilatory creams--very toxic stuff.

onatreetop
02-26-2010, 11:17 AM
My mother uses an eletric razor but I am trying not to play with it. The one time I had my stash waxed it came back thick and dark. So.......I am afraid to mess with it. I have to bleach it instead weekly. As long as the fuzz stays light I am okay with it. Even the lady that does my hair offered and swore it wont come back but I know it will just like my eye brows do. I have been pulling them since I can remember. i get my hair high lighted to hide the gray that is showing up. Not ready for the whole head yet.

DEE
02-26-2010, 09:31 PM
im taking cytoxan tablet form daily and was adviced to have hair cut as short as could bear already had some gray hair now completely gray!!! people say it suits me this colour !! also advised sleep on silk pillow case to stop friction and using ginger shampoo . saves on haircuts as not growing to much bit chilly now with all the rain ans snow understand now why BARON always has wooley hats on no sure whos got the biggest bald patch lucky for me i have friend who trims hair and most people can see them but what the heck lease off problem ;) DEE x

Sangye
02-26-2010, 11:22 PM
Dee, I don't think a silk pillow is going to do much good. The hair falls out because the cells have died. Even if you don't touch your head the hair falls out. I have no idea what ginger shampoo is going to do, either. If it's more expensive than what you're using, I think it's probably a waste of money.

I didn't get more grey hair, but I guess some people do. I have the same amount I started with in 2006 actually.

Your hair will fill in again when you're off the ctx.

DEE
02-27-2010, 01:26 AM
all advice given to me with a pinch of salt sangye !!! got to live in hope hair all gray because was already heading that way 55 next if anything thin and itchy now
consult think of changing cyclo to i v does that make any different to hair lose do u think?

jola57
02-27-2010, 05:20 AM
Dee, I hae been on ctx for year and half and did not lose hair, it thinned out a bit but it curled also. So now I have a free perm. I do not think cutting hair or sleeping on silk pillow will change anything. If you are predispossed to lose hair, you will lose it long or short. I would not cut your hair until you see that it is cumming out in clumps. And I mean big clumps, when my hair was thinning out I would find almost a fist full in the drain, but I still did not go bald. So hold off the hair shearing :))

Lightwarrior
02-28-2010, 04:49 PM
Ginger tablets huh? Sipping Ginger ale is helping me a bit right now. I'm guessing my local healthfood store should have them. I'm reluctant to add yet another chemical to control the side effects of the cytoxan and pred. Thanks

elephant
02-28-2010, 10:59 PM
How are you feelling Lightwarrior?

Sangye
03-01-2010, 01:23 AM
Lightwarrior, I hope you're on an acid blocker with the pred.

Do you take your ctx all at once? I couldn't tolerate it that way, and my doc said it doesn't matter if I split it up as long as I get the full dose each day. I had to take 50mg three times a day, with lots of food. I had MAJOR stomach pain otherwise.

snooz23
03-01-2010, 07:38 AM
Sangye, what is an acid blocker? Is it something prescribed? I am currently taking only 10mg but was never on that? Thanks~

Sangye
03-01-2010, 11:44 AM
Acid blockers are the drugs like Zantac, Prilosec, Protonix, etc... If you weren't on more than 10 mg pred, your doc might not have prescribed one. But higher than that-- it's standard of care to have you on an acid-blocker. Pred can do serious damage to your stomach without it.

Even on my measly 4mg pred, I still have to take acid blockers a few times a week or the acid gets out of hand.

An aside: acid blockers are exactly the wrong medicine for acid reflux/ GERD unless it's due to a medication.

JanW
03-01-2010, 11:47 AM
What is the right medication, Sangye? I was prescribed Protonix by the pulmo precisely because they thought that the reflux was interfering with the asthma that I turned out not to have, but it was for GERD, not for heartburn that would come on because of the meds.

Sangye
03-01-2010, 12:33 PM
Pred and certain other meds are acid-producing. If you take pred without an acid-blocker you'll damage your stomach. Some other meds are like pred (ie, acid-producing), meaning they add to the stomach acid your body makes-- bad news.

However, if you're NOT on pred or other acid-producing meds, then acid-blockers are the wrong thing to take. Holistic and medical doctors view this completely opposite. The medical opinion is that acid reflux/GERD occurs as a result of excess stomach acid. The holistic opinion is that it occurs as a deficiency of stomach acid.

It's a long explanation, but we holistic docs know we're right. We resolve heartburn/GERD/acid reflux all the time, while medical docs have to keep patients on drugs to control symptoms.

elephant
03-01-2010, 12:54 PM
Sangye that was very informative. So how do we resolve heartburn/gerd/acid reflux? I am on nexium that seems to help. I take it 2-3 times a week.

Sangye
03-01-2010, 01:03 PM
Are you on pred?

snooz23
03-01-2010, 01:06 PM
I am currently on 10mg. but I was on 60mg. and various amounts coming done. I never took this acid blocker stuff? I never had any problems w/ my stomach, however I should be on it anyway? I am surprised Dr. Langford would not have me on it? I will check w/ her because I believe I am going to have to go way back up this week. Thanks for the info.~ snooz

Sangye
03-01-2010, 01:11 PM
I can't imagine Dr Langford would miss something like that. Please double-check with her.

janNaz
07-21-2010, 03:09 PM
Hi all.

I've been on cytoxan and pred since March 11, 2010 (a little over 4 mos). I met with Rheumy today and asked about alternative to ctx. She informed that dosages of my meds (currently 175mg ctx and 25mg pred) will remain the same for now until reevaluated in 3 weeks, and that the plan is to continue with cxt (tapering along the way) for a year. Now my major concern: I thought that I read somewhere on this forum that ctx should not be taken more than 6 mos because of long term side effects. Maybe I misinterpreted? Does anyone have any info to share on this? Thanks much!

pberggren1
07-21-2010, 04:41 PM
Generally ctx is not taken for more than 6 months at a time. I would be concerned about this. I would press your Rheumy on this and ask for a consult with a Wegs specialist or go see a Wegs specialist yourself. You should probably be going on to a maintenance drug like Cellcept or Imuran.

Jack
07-21-2010, 06:36 PM
There are no hard and fast rules, but the recommendation for Cytoxan is for 6 months maximum in any one treatment unless there are very good reasons to continue. This is because the risk of serious side effects is cumulative and you may need to resort to using the drug again in future. You can easily use up your lifetime "safe" dose as I have now done.

DEE
07-21-2010, 10:37 PM
ive been tsaking cxt for nearly ten months and as Jack says the reason is its the only drug that they have found that keeps mean stable ,hoping to change end aug ! they have to make a decision for the reason of i may need it again at some point They are thing of trying Imuran DEE x

misskay
07-22-2010, 12:19 AM
my doc (and rx label) both tell me to take it first thing in the morning and drink plenty of water to flush the system and keep the cytoxan from sitting in the bladder overnight.

Jack
07-22-2010, 12:50 AM
Exactly right. Don't let the stuff sit in your bladder for any longer than it need be. That is where most of the bad side effects stem from.

JanW
07-22-2010, 02:05 AM
A good rule of thumb with WG (or probably any disease really) is to take the smallest amount of meds/surgeries/procedures etc. to stop damage and start healing. So, for instance, I'm not on prednisone (and have not been) because my doc was willing to let the immunosuppressant handle my inflammation, even though it took a few months. In the very short term I had more aches, pains, nasal issues, etc. but in the long term he believed (as did I) that my symptoms were tolerable and that steroids would do more damage (I already have osteoperosis). Also, although my stenosis is forming again, my surgeon will not operate until it impacts my quality of life--particularly since this is surgery that some Weggies have to have over and over (and each one causes it's own slight damage), you want to minimize the number of procedures. Your doctor may well think that you were sick enough that keeping you on ctx just a tad bit longer than necessary will give you greater 'insurance' against a relapse, but he may not be weighing the fact that you could need it again, or even the damage it might do in a very short period of time. Others are right -- the next drugs in the roster should/can be immuran, cellcept or methotrexate.

I think that the more familiar the doc is with this disease, the more they think about this and can really help all patients weigh the cost/benefit.

Jack
07-22-2010, 02:20 AM
I'm not on prednisone (and have not been) because my doc was willing to let the immunosuppressant handle my inflammation
I think this is an indication of how variable both Wegener's and our reaction to drugs can be. Early attempts to treat the disease used only immuno-suppressants or steroids alone and were unsuccessful with a very high death rate. Treatment without Pred is not an option for most and I envy you for getting away without using it.

JanW
07-22-2010, 03:28 AM
I know that treating with pred only definitely doesn't work -- and that's been proven, but I wasn't aware that the reverse (treating with only chemo doesn't work) was also true. I thought (and my doctor's thinking) is that many docs who are unfamiliar with WG think that the tempo of the disease is largely the same across all populations -- that is, if you don't 'get on top of it' as quickly as possible, it will advance rather rapidly/drastically suddenly, possibly killing the patient (i.e. from dx to death in the 1970s was less than a year for instance -prior to the discovery of how immunosuppressants could be effective in fighting the disease).

Now, the thinking seems to be (at least for the specialists at Hospital for Special Surgery, anyway) that looking at the person clinically, as well as trying to ascertain how long they had been symptomatic (so in my case 5+ years with only inhaled steroids for what was wrongly dx as asthma), would yield clues as to the tempo of the disease. In five years, I really hadn't progressed past severe subglottic stenosis and a saddle nose. My c-ANCA was positive and my P3 was very high to be sure, as were my inflammatory markers, but I wasn't that 'sick' -- yet. So, he was willing to risk taking his time getting the inflammation under control. Of course, this meant frequent monitoring, and doesn't discount the fact that something may go seriously wrong at any time. However, this would be true if I were taking pred as well.

My two specialists haven't batted an eye at my not being on pred (eye and ENT) and in the case of my stenosis, one won't prevent the other anyway.

LisaMarie
07-22-2010, 03:33 AM
ok everyone ...hide the milk duds...just got off the phone with the doc office...insurance will not pay for cytoxin iv and it is $130 approx per dose...so i have to pay out of pocket then try to get reembursed...ughh...was suppose to start infusions this week....now not sure when...or how often ...I could just scream.....damn where did I put those milk duds....It is hard enough having WG without all the drama of the insurance...wish me luck in remaining calm and collective when i call the insurance companies....thanks for letting me vent:mad:

misskay
07-22-2010, 03:45 AM
I'd have my doc on the phone with the insurance company asap... have him/her explain the medical neccessity of the drug and what could happen if it isn't administered NOW. Best to you, keep us posted. *hands LisaMarie anothe milk dud*

JanW
07-22-2010, 03:49 AM
Why isn't insurance going to pay? If I were you I'd get on the phone with them myself and understand the reasons. What medication are they suggesting that your doctor put you on? Do NOT start to pay out of pocket unless absolutely necessary -- insurance companies can come up with all kinds of excuses if you start to pay and then want to switch to them paying.

If they are saying that you need to take in it oral form and you can't for whatever reason, see if you doc an appeal this for you. Sometimes docs don't fight so hard (because it's you paying out of pocket and not him having to worry about being reimbursed).

I've had to fight the insurance company more since WG than ever (was never sick before), and I haven't lost yet! Remember too that there is no such thing as an approved drug for WG -- so if they tell you that the drugs aren't approved for WG, that's also a lame excuse.

LisaMarie
07-22-2010, 04:15 AM
on the phone with both now amazing how i can multi task with a phone in both ears,,,,,,getting the run around from Aetna....then will call blue cross blue shield....the doctor office will set up the infusion and even though i do not want to pay out of pocket ...i can not afford to wait for this to get cleared up...ughh my sridor is slightly increased and occassional voice changes ...if it does not stablized I will have to go back to the otolarygnologist to have my trach fixed again.....thanks for the milk dud ....even imaginary ones are helping me .....i just wanna throw something...must be that italian gene coming out in me....wish me luck.....God grant me patience

Jack
07-22-2010, 04:40 AM
I know that treating with pred only definitely doesn't work -- and that's been proven, but I wasn't aware that the reverse (treating with only chemo doesn't work) was also true.
There was a move away from steroids to chemo drugs in the 60s but the results were very poor. It was only when they combined the treatments by using both Pred and Ctx in the 70s that they saw a dramatic improvement in outcome. However, in the early days 40% died from drug side effects!

janNaz
07-22-2010, 05:19 AM
Thank you for your replies. I will definitely press my Rheumy on this. Unfortunately, I don't have a WG specialist...yet...I am in the process of looking for one tho. I'm in AZ - so far from all the WG experts it seems.

Also, I take ctx in the evening with dinner, per instructions of pharmacist. I have a call into my Rheumy right now about changing that to morning. Certainly don't want it sitting in my bladder through the night.

Thanks again. Have a wonderful day.

Sean48
07-22-2010, 06:07 AM
I am starting cytoxan today and one of the things my doctor told me was to drink lots of water to help the bladder.

Jack
07-22-2010, 07:19 AM
I think we all tend to skirt around the unpleasant fact that Cyclophosphamide (Cytoxan) along with the other Chemo drugs can not only cure cancer, but can cause it as well. After doing its work, the drug is mainly excreted in the urine and will damage the bladder on its way out. This cell damage may result in a cancer that will only show itself many years later, but the risk can be minimised by keeping the dose down, diluting the excreted solution and minimising its residence time in the bladder. Occurrence of bladder cancer in Wegener's patients is around 15% after 15 years. Or, to look on the bright side - 85% don't suffer from it. There are also other bladder related side effects so any abnormal observations should be reported to your specialist.

drz
07-22-2010, 07:55 AM
Hi all.

I've been on cytoxan and pred since March 11, 2010 (a little over 4 mos). I met with Rheumy today and asked about alternative to ctx. She informed that dosages of my meds (currently 175mg ctx and 25mg pred) will remain the same for now until reevaluated in 3 weeks, and that the plan is to continue with cxt (tapering along the way) for a year. Now my major concern: I thought that I read somewhere on this forum that ctx should not be taken more than 6 mos because of long term side effects. Maybe I misinterpreted? Does anyone have any info to share on this? Thanks much!

My rheumatologist says he wants to limit my time on Cytoxan to a few months of having control of WG disease before he switches to something less toxic but keep it under year for sure. I gather side effects are serous and taking longer can be dangerous to your long term health. your treatment plan sounds reasonable and should be based on your lab results, symptoms, history, and treatment needs. The experience and skill of your presecribing physician is most important factor in getting right treatment plan for you. We have to have faith and trust in them and give them all relevant info about our symptoms so they can adjust and tweak our treatment plan to keep up with changes in our WG.

jody
07-22-2010, 07:59 AM
hi, jack and all i havent been here in a long time.been pretty sick all most died in dec.09 ovarien cancer.had to have a filter put in, blood clots got in my lungs. lots of other stuff but thanks to god im here.had 6 rounds of chemo.but im going into the study.not sure what i will get. i did feel some better with the wg, when i was on chemo.i still take fragmin for blood clots. i just wish they would take me more seriously about my wg.....jody

drz
07-22-2010, 08:01 AM
Thank you for your replies. I will definitely press my Rheumy on this. Unfortunately, I don't have a WG specialist...yet...I am in the process of looking for one tho. I'm in AZ - so far from all the WG experts it seems.

Also, I take ctx in the evening with dinner, per instructions of pharmacist. I have a call into my Rheumy right now about changing that to morning. Certainly don't want it sitting in my bladder through the night.

Thanks again. Have a wonderful day.

I have a friend going to Mayo inAZ and he is remission now from WG. I don't know if his physician bothers to register as a vaculitis expert but i would certainly guess the Mayo there has people experienced in treating vasculitis and they should have consultation available from their Rochester clinic too if needed. The large University hospital usually have good medical facilitiees where they are likely to treat esoteric disease like WG too.

elephant
07-22-2010, 08:19 AM
Hi Jodi, welcome. So glad you survived ovarian cancer. Do you see a Rhuematologist that specializes in Wegeners disease? You sound like you have been thru so much? You really need to have a specialist that can over look your care. Thanks for posting.

me2
07-22-2010, 01:38 PM
Hi Jody, wow you have been through a lot. I would trust the fact that you yourself are concerned about your Wegener's and keep pushing your doctor until you feel you are on the right track. Trust yourself. Did you know that the Vasculitis Foundation has doctors who are Wegener's experts that your doctor can call for free consultation? Here is the link to their web site. Front Page | Vasculitis Foundation (http://www.vasculitisfoundation.org/)
You can click on 'Medical Consultants'. Welcome to the forum. I would post a smilie face now but I am not that savy.

pberggren1
07-22-2010, 04:01 PM
me2, if you are already on this site that automatically makes you savy!!!

me2
07-22-2010, 04:22 PM
me2, if you are already on this site that automatically makes you savy!!!

Well thats true Phil. (he puts keyboard aside to pat self on back) We all have different talents and flat spots. (Hey , I think I figured out the quote thingy this time.)

pberggren1
07-22-2010, 04:55 PM
Yes you did me2. Congratulations!! You deserve 2 chocolate chip muffins and a big hug!!

I forget your real name and where you live?

pberggren1
07-22-2010, 04:55 PM
Yes you did me2. Congratulations!! You deserve 2 chocolate chip muffins and a big hug!!

I forget your real name and where you live?

pberggren1
07-22-2010, 04:57 PM
Whoops. I posted the same thing twice. Wait a second there is a member on here with the name of twice. Where is she anyway?

DEE
07-22-2010, 08:35 PM
just got back from hospital after having cystoscopy found no damage to bladder from cxt could not explian why i get blood trace in urine test said they could look into it !! DEE x

elephant
07-22-2010, 08:43 PM
Dee glad your ok. Hopefully they will solve the mystery. Your kidneys are doing ok?

DEE
07-22-2010, 08:53 PM
u sound showed no inflamation just got blood result and the only one involing kidney s below range is GFR ? need to goggle it as not one i understand but glad its over , having a packet of crisps !!!! can now look forward to birthday bq will follow up todays results with gp on monday DEEx
ps still getting lower back pain !!!

elephant
07-22-2010, 11:29 PM
That's where the kidneys are Dee. Have you done a 24 hour urine? You collect your urine for 24 hours and store it in a container in the fridge. Sound fun?

Sangye
07-23-2010, 12:19 AM
Also, I take ctx in the evening with dinner, per instructions of pharmacist. I have a call into my Rheumy right now about changing that to morning. Certainly don't want it sitting in my bladder through the night.


If that were me, I'd call that pharmacy and raise heck. The necessity of taking ctx early in the day with tons of water is very well-known and s/he put you at risk for damage now and in the future. My stomach couldn't tolerate the full daily dose at once--even with food. I took it in 3 doses with meals. Just make sure to take the last dose by 6:00pm so you'll have plenty of time to drink the necessary water and pee it out before bedtime.

Sangye
07-23-2010, 12:23 AM
Lisa Marie-- I'm just outraged at your insurance company. I've never heard of one refusing to cover ctx! Insist that your doctor grow some fangs right now and fight alongside you.

Sean48
07-23-2010, 12:28 AM
Hi I started my cytoxan yesterday and have a couple of questions. As of now I have no issues other than weakness and tiredness. Everything prior to diagnosis is gone. I am wondering if once the cytoxan kicks in if anyone continues to have no side effects, or is inevidable? I know everyone is different but I hope to hear from someone who is doing ok on it. I am taking 60mg of pred and 150 mg of cytoxan (3 times a day). Also another question, is there a minimal amout of water we should be drinking? I forgot to ask my doctor. She said plenty of water......Health wise they say 64oz but thats for normal water intake. Thanks..

Sangye
07-23-2010, 12:43 AM
Ctx takes about a month to really start working. The relief you're feeling right now is due to the high-dose pred.

The ctx side effects are cumulative, so the longer you're on it, the more you'll have. I noticed the worst weakening by the third month and it went downhill from there. Other side effects hit me at the 3-month mark, too. I remember my first couple weeks on ctx I didn't notice anything. I thought I was just doing so well thinking positively. :D

Drink 1.5 to 2 liters of water each day. Measure it so you make sure you're getting it in. I use a 1-liter bottle and made sure I had to refill it by 3:00pm each day.

elephant
07-23-2010, 12:44 AM
Sean is your total cytoxan dosage 125 mg?

Sean48
07-23-2010, 12:54 AM
Yes....50 mgs ....3 a day

Sean48
07-23-2010, 12:55 AM
Thanks so much.....This is exactly the answers to my questions. Thank so much Sangye.....I really like the idea about the water bottle. I will be sure to do that......

elephant
07-23-2010, 12:56 AM
Ok, phew. Glad to hear that.

DEE
07-23-2010, 01:14 AM
That's where the kidneys are Dee. Have you done a 24 hour urine? You collect your urine for 24 hours and store it in a container in the fridge. Sound fun?

Not for awhile but always give a sample on clinic days which is about ever three weeks DEEx

Jack
07-23-2010, 01:25 AM
I had no side effects (at least not so far, fingers crossed!) other than minimal hair loss.

DEE
07-23-2010, 01:27 AM
HI Sean48 ive been taking 150mg a day of cytoxan a day and have just reduced to 125mg a day and dont worry about drinking so much water i never used to drink much but used Sangye method with the bottle and still do it without having to think about it
just have to become very friendly with the bathroom :) im able to take the full 125mg in the morning altogether without a problem but i also take stomach tablet not long after.
hope everything goes ok DEEx

LisaMarie
07-23-2010, 02:16 AM
Lisa Marie-- I'm just outraged at your insurance company. I've never heard of one refusing to cover ctx! Insist that your doctor grow some fangs right now and fight alongside you.
The doctor office is just as fusrtated as I am ...my Doc is beyond mad....I am to call back on friday...they are calling today and friday....since I have 2 insurances...aetna is primary and has to be processed before...Blue cross blue shield will give a definative answers...I payed 146.33 for the cytoxan dose 1 gram yesterday out of my flex spending account...which is quickly dweddling...s i am hoping to be re embursed and that they will cover the drug...The infusion lasted about 2.5 hours with hydration and all...plus I am drinking like a fish...I have to have lab drawn in 7-14 days then have an infusion a month for the next ??? months depends on how I do...I have a really achy arm where the infusion went in and a fewe bouts of mild nausea with emesis....per the nurse i may have a bad run 12-24 hours post infusion...so only working 1/2 a day...they gave me compazine to take but i can not work and take it so I took one dose last night before bed and will tqake another this afternoon when i get off work...I need to go talk to my HR person to see if he can untangle this mess....I am so fustrated...ughh better get back to work ...also have a stack that arrived in the mail yesterday from the lovely insurnace companies so maybe it will shed some light...lol...just hope it does not blind me....thanks for listening:confused:

elephant
07-23-2010, 03:42 AM
Sorry you are going thru this LisaMarie, just reading your post makes me want to Scream at the insurance company! Do you have a Case Manager on your case? Does your Insurance provide one to help speed this up!!

Sangye
07-23-2010, 03:50 AM
Lisa Marie, tell them you're going to call the state insurance commissioner, that ctx is the gold standard treatment for this potentially life-threatening disease, and that the delay they already caused you can have devastating consequences. Then call the state.

I've had to do all this stuff for myself even on my worst days, too, so I know how it is. Hang in there. We'll get you through this.

LisaMarie
07-23-2010, 04:03 AM
Lisa Marie, tell them you're going to call the state insurance commissioner, that ctx is the gold standard treatment for this potentially life-threatening disease, and that the delay they already caused you can have devastating consequences. Then call the state.

I've had to do all this stuff for myself even on my worst days, too, so I know how it is. Hang in there. We'll get you through this.
Just got off the phone with the doc office...apparently the doc spoke with the medical dircetor of Aetna this am and let her have it along with sending her tons of documentation of the harm she is causing me by not approving the drug ...she is suppose to call him back this afternoon so maybe i will have some answers tomorrow...I also have my HR person involved...tomorrow I will call the state as you recommend...I am just to tired and mad at this point to talk appropriately to anyone on the phone....between the pred and ctx infusion I am wiped...I know I should not feel any significant effects of the ctx for a bit but my arm ...bones in the arm the infusion was given ache so bad and I have nausea...especially when it comes with nausea.....I did good today though attempted to eat a light salad and have not thrown it up....even though I reallly wanted those milk duds....or a whole triple chocolatte cake with a jug of milk....i would be so sick after wards but it would be amazing going down...chocalate especially dark chocalte seems to calm me down and bring me to a tempary happy place...thasnks for listening:eek:

Lightwarrior
07-23-2010, 04:18 AM
LisaMarie,
Sorry you are having so much trouble. Write down exactly what you want to say to the state insurance commission then call them tommorrow even if you get good news this afternoon, Aetna and Blue Cross should be held accountable.

Sangye
07-23-2010, 05:13 AM
Aww, Lisa Marie. I'm so sorry they're putting you through this. I never took IV ctx. Is the bone pain normal?

LisaMarie
07-23-2010, 06:01 AM
Aww, Lisa Marie. I'm so sorry they're putting you through this. I never took IV ctx. Is the bone pain normal?
Not sure was hoping someone here has had it iv before......and could let me know what to expect...stll drinking like a fish ....the bathroom is my best friend in more ways than one...lol....will be heading home soon to take compazine and go to bed....praying tomorrow is better...would like to work atleast 8 hours to morrow so I do not use all my pto now in case i need it later......talk to ya all later...I plan on drafting a letter to follow up my phone call to the state.....thanks for the advise ...you are such a wise and informative part of this group, sangye...I hope you know how much you are loved and appreciated here!!!!!

Sangye
07-23-2010, 07:44 AM
I do know, thank you. You're all such amazing support to me, and it makes me happy to be able to give back when I can. :)

janNaz
07-23-2010, 08:27 AM
If that were me, I'd call that pharmacy and raise heck. The necessity of taking ctx early in the day with tons of water is very well-known and s/he put you at risk for damage now and in the future. My stomach couldn't tolerate the full daily dose at once--even with food. I took it in 3 doses with meals. Just make sure to take the last dose by 6:00pm so you'll have plenty of time to drink the necessary water and pee it out before bedtime.

Thanks all. Sangye, my Rheumy called me back and said ctx is definitely a drug that should be taken early in the day, and she couldn't understand why my pharmacist's instructions were to take it a dinner. She was going to contact them for explanation. She instructed me to take it early in the day from here on, which I did as of yesterday. Fortunately I do drink lots of water and normally don't go to bed until about 3-4 hours after taking it (after dinner), so maybe I'll be lucky enough that any damage hasn't been done to my bladder. I trusted the instructions of the pharmacist! If it weren't for this forum, I wouldn't have questioned it at all......so thank you all for the life saving information!!

janNaz
07-23-2010, 08:47 AM
I have a friend going to Mayo inAZ and he is remission now from WG. I don't know if his physician bothers to register as a vaculitis expert but i would certainly guess the Mayo there has people experienced in treating vasculitis and they should have consultation available from their Rochester clinic too if needed. The large University hospital usually have good medical facilitiees where they are likely to treat esoteric disease like WG too.

Thanks drz. Do you know if your friend's physician is Dr. Mehrdad Mazlumzadeh? This is the doctor that treated Sangye when she lived in AZ. Scottsdale Mayo is not on the VF's list, and my hope is to consult with a Wegs specialist at one of the centers on the list; however, it is definitely closer to me than those listed. Which brings to mind, University of Utah clinical center - has anyone or is anyone currently being treated by a Wegs specialist at this location?

drz
07-23-2010, 11:16 AM
Thanks drz. Do you know if your friend's physician is Dr. Mehrdad Mazlumzadeh? This is the doctor that treated Sangye when she lived in AZ. Scottsdale Mayo is not on the VF's list, and my hope is to consult with a Wegs specialist at one of the centers on the list; however, it is definitely closer to me than those listed. Which brings to mind, University of Utah clinical center - has anyone or is anyone currently being treated by a Wegs specialist at this location?

I can ask him next time I talk with him by phone.

Sangye
07-23-2010, 12:00 PM
JanNAz-- I'm also very upset at your rheumy for not explaining all that about ctx. It's her job! Even my first lousy rheumy really explained it well. He was one of the worst docs you could imagine, but he got that and a couple other things right at least!

LisaMarie
07-24-2010, 12:07 AM
Aww, Lisa Marie. I'm so sorry they're putting you through this. I never took IV ctx. Is the bone pain normal?

ok I am getting ready to start my phone call regiem for the insurance companies and the state commissioner and my doc....I did find out that joint pain is common but it did not specifi at the injection site ...it is much better today....nausea has decreased no emesis since early this am ...so I put on some make up and gonna fake like i feel great....to improve my attitdue so maybe I will not loose it today with the insurance company and anyone else...wish me luck....I started prenatal vits yesterday maybe it'll put a pep in my step.....keep ya all updated...thanks again for listen....uh oh I just notice I am out of milk duds.....darn it .....maybe a piece of jerky will work if my jaw can stand it...lolol....

elephant
07-24-2010, 12:36 AM
LisaMarie keep trucking along. You will get that cytoxan strong girl. Mild duds for everyone, except Sangye. :)

Sangye
07-24-2010, 08:51 AM
I hope it went well, Lisa Marie. Glad you're feeling better today.

And hey, knock yourselves out with your little Milk Duds. :D

germaine
07-24-2010, 09:17 AM
Hi I started my cytoxan yesterday and have a couple of questions. As of now I have no issues other than weakness and tiredness. Everything prior to diagnosis is gone. I am wondering if once the cytoxan kicks in if anyone continues to have no side effects, or is inevidable? I know everyone is different but I hope to hear from someone who is doing ok on it. I am taking 60mg of pred and 150 mg of cytoxan (3 times a day). Also another question, is there a minimal amout of water we should be drinking? I forgot to ask my doctor. She said plenty of water......Health wise they say 64oz but thats for normal water intake. Thanks..

Hi, I've been on cytoxan for too long. I am currently on only 25 mg per day. Dr wants to try me on alternative in September. 8mg of pred. I am doing very, very well as far as general welbeing and strength. I have always had a habit of drinking lots of water, I also never have coffee, and very very limited alcohol. Some tea. I do think this helps me to tolerate the meds. I always take them with food, rarely processed and never salty. I am soooo keen to get of more meds, but tend to flare going down. So far so good this time. Germaine

Sangye
07-24-2010, 10:01 AM
What is the alternative drug your doc is considering? I can't believe s/he would keep you on 25 mg ctx. It isn't a high enough dose to control the Wegs, but it's enough to use up your lifetime ctx supply and put you at high risk for cancer. So, little benefit and high risk. Not good.

pberggren1
07-24-2010, 11:26 AM
That does sound quite odd being at 25mg of ctx.

Sean48
07-25-2010, 03:31 AM
Thanks Dee......Good to hear. I have been doing ok so far so thats a good thing. The only thing with me is I get floppy (as I call it). Today I am going to a graduation party and it is going to be 91 and very humid. I will play it by ear how long we stay. Its outside but I can always go in the house to relax where its air conditioned. I do still have my oxygen tank so wonder if I should bring it with me. They will be having fans in the garage (3 car alll cleaned out) so i will bring my recliner deck chair. Any comments?
Thanks

Lightwarrior
07-25-2010, 03:35 AM
Thanks Dee......Good to hear. I have been doing ok so far so thats a good thing. The only thing with me is I get floppy (as I call it). Today I am going to a graduation party and it is going to be 91 and very humid. I will play it by ear how long we stay. Its outside but I can always go in the house to relax where its air conditioned. I do still have my oxygen tank so wonder if I should bring it with me. They will be having fans in the garage (3 car alll cleaned out) so i will bring my recliner deck chair. Any comments?
Thanks

I wilt fast in the heat and it usually costs me several days if I insist on being out in it. Pace yourself, stay well hydrated and cool.

elephant
07-25-2010, 06:59 AM
Sean48, take care of yourself and enjoy!

Sangye
07-25-2010, 07:20 AM
Sean48, heat is very bad for Wegs--increases the Fire element. I don't recommend sitting out there if you don't have to.

drz
07-25-2010, 11:56 AM
Sean48, heat is very bad for Wegs--increases the Fire element. I don't recommend sitting out there if you don't have to.

How about cold weather? I know someone who had to move to Arizona cause he couldn't tolerate cold after he got WG disease.

pberggren1
07-25-2010, 12:02 PM
I always look forward to fall and winter. I can't handle the heat.

Sangye
07-25-2010, 12:40 PM
The two extremes-- very hot and very cold-- can be hard on Weggies. I always do much better in cold weather, though.

janNaz
07-25-2010, 03:49 PM
I'd take cold weather any day! I don't know why I'm still here in AZ. Lol.

janNaz
07-25-2010, 04:17 PM
I can ask him next time I talk with him by phone.

thank you drz. I appreciate the info.

pberggren1
07-25-2010, 05:42 PM
janNaz, there is always lots of room up here in Canada for you. You would be more that welcome in the small city that I live in.

elephant
07-25-2010, 10:59 PM
THe heat is so awful here high 90's and I can't even stand it...I stay inside. I don't like the cold either!

Jack
07-25-2010, 11:08 PM
Heat for me rather than cold any day.

DEE
07-26-2010, 12:28 AM
heat for me gives me breathing problems and the cold makes all joints painful need it to stay somewhere inbetween DEEx

elephant
07-26-2010, 01:39 AM
My husband told me the best place is Seattle Washington (not too hot/cold).

Sean48
07-26-2010, 01:54 AM
Thanks everyone. Well today I am doing fine. Yesterday was a great day and I brought my recliner and stayed in the shade. It turned out to have a nice breeze and less humid than expected. I kept myself hydrated. My brother in law had a great fireworks display (we live in New Hampshire where they are legal) and they were beautiful. Realized how blessed I am that I was diagnosed and able to be at the party. Thanks for all the feed back. I am a spring, fall and winter person.....Summer is not my favoriate season either......Have a good day and hope today is a pain free day.

pberggren1
07-26-2010, 06:10 AM
Seattle is nice.

It is 90 here today. Quite hot. Dad has the air conditioning running. I don't blame him. I am too cheap to run it. Though if we had a few days in a row of this heat I would probably run it for a while every day.

Doug
07-26-2010, 06:15 AM
Don't want to say I run the air too much, but Louie does still have most of his winter coat. (Just kidding! Most of his winter coat is all over the carpet, my computer keyboard, my bed, any place His Highness wishes to go- and more!)

Seriously, I couldn't get through the hottest part of the summer season here without air conditioning. When it gets into the upper 80s or above, I gravitate toward the cold.

pberggren1
07-26-2010, 06:44 AM
I hear you Doug about gravitating towards the cold when it gets too hot.

My cat, Sophie, is very fussy about where she sleeps. She only sleeps on a blanket on the couch or in someones lap, only in they are wearing jeans. Or she sleeps on top of the back of the love seat or in the bathroom sink. And she also leaves a lot of hair everywhere as well.

LisaMarie
07-27-2010, 03:34 AM
ok quick update...per verbal confirmation i will be re embursed for the IV cytoxan i paid for and either rituxan or cytoxan has been approved for 2 months....but not getting getty til I get something in writting...it amazes me how threaten to call that state commisiooner and My doc throwing a fit and my Hr person trowing a fit can make thing kinda snap into place ...This cytxan has given me the worse all over ache in my joints....not sure how long the IV form gives you effects...I get labs drawn on Thurs...to see where I stand ...and if I need more or less either in dose or frequencty...I know I am nowhere never remission but would love to feel a tinge better ....atleast I look well...thats what my friends tell me...I fake well too at work...but hit the bed as soon as I get home....my breathing has not gotten better so I guess I will bit the bullet and go see the throat specialist..ughh.....I know ...Before you say it "Listen to my BODY"...I just do not like what it is saying.....better get back to work ...thanks for listen and all of your support and advise...:p:p
Sangye
Hope your are feeling well

Sangye
07-27-2010, 03:44 AM
it amazes me how threaten to call that state commisiooner and My doc throwing a fit and my Hr person trowing a fit can make thing kinda snap into place
Yup. You just do what you have to do in order to get the treatment you need. I hope you feel better soon, Lisa Marie. :)

Jack
07-27-2010, 03:45 AM
I know ...Before you say it "Listen to my BODY"...I just do not like what it is saying....
I think most of us suffer from that. ;)

elephant
07-27-2010, 05:34 AM
LisaMarie so nice to hear that you are getting what you need. In time you will feel better! Really, just be patient. Get a good rest today. :)

wgrebel
07-27-2010, 09:44 AM
My main problem with Cytoxan was the groggy/fatigued feeling all the time. My dad told me the night I was released from the hospital this most recent time (July 21) that it was the first time in a long time I did not have that tired/fatigued look on my face. After work or anything I would just be wiped out. Protonix & Prevacid controlled the nausea while I was on the Cytoxan. I can speak from personal experience when I did not have the protonix or prevacid (30 mg prescription & not the OTC stuff) after my October 2009 hospital stay it took about a week of being on Cytoxan before the stomach/nausea problems hit. I had severe stomach pains and one night suffered with nausea and stomach cramps for about 12 hours. I got very weak and scared to each because I had crippling stomach pains every day from around November 3 or 4 until November 13 when I was rushed to Memphis Baptist (for the second time) from my local HP. Doctors administered every stomach & GI test known to man. I had the light down my throat & they watched me digest an egg over a four hour period. What a great experience. I started oral cytoxan upon my release November 24. I was also prescibed protonix 40 mg in the AM and 40 Mg in the PM and I had no more nausea or stomach problems. I switched to 30 mg prevacid 2X a day May 2010 and still no nausea or stomach problems on the CTX. I hate CTX but as we all know it is a necessary evil if you have WG.

Sangye, I have heard that it (Cytoxan) is also a type of "break glass in case of emergency drug" for WG if you are on another maintenance drug (cellcept, imuran, ect) and they stop working or you flair really bad. Is this correct?

LisaMarie
07-27-2010, 11:54 AM
My main problem with Cytoxan was the groggy/fatigued feeling all the time. My dad told me the night I was released from the hospital this most recent time (July 21) that it was the first time in a long time I did not have that tired/fatigued look on my face. After work or anything I would just be wiped out. Protonix & Prevacid controlled the nausea while I was on the Cytoxan. I can speak from personal experience when I did not have the protonix or prevacid (30 mg prescription & not the OTC stuff) after my October 2009 hospital stay it took about a week of being on Cytoxan before the stomach/nausea problems hit. I had severe stomach pains and one night suffered with nausea and stomach cramps for about 12 hours. I got very weak and scared to each because I had crippling stomach pains every day from around November 3 or 4 until November 13 when I was rushed to Memphis Baptist (for the second time) from my local HP. Doctors administered every stomach & GI test known to man. I had the light down my throat & they watched me digest an egg over a four hour period. What a great experience. I started oral cytoxan upon my release November 24. I was also prescibed protonix 40 mg in the AM and 40 Mg in the PM and I had no more nausea or stomach problems. I switched to 30 mg prevacid 2X a day May 2010 and still no nausea or stomach problems on the CTX. I hate CTX but as we all know it is a necessary evil if you have WG.

Sangye, I have heard that it (Cytoxan) is also a type of "break glass in case of emergency drug" for WG if you are on another maintenance drug (cellcept, imuran, ect) and they stop working or you flair really bad. Is this correct?
was that with iv cytoxan or po that made you soo sick...I really hate the IV stuff

Sangye
07-27-2010, 12:04 PM
Sangye, I have heard that it (Cytoxan) is also a type of "break glass in case of emergency drug" for WG if you are on another maintenance drug (cellcept, imuran, ect) and they stop working or you flair really bad. Is this correct?
Yes, there are only two "big gun" drugs that can be used to control highly active Wegs-- cytoxan and rituximab.

LisaMarie
07-28-2010, 10:24 AM
Ok here it goes...the Doctor offfice got written confirmation that Aetna will pay for 4 weeks of rituxan....now they will work on blue cross blue shield....why only 4 weeks not sure...should know when it will start by tomorrow....and how often...atleast i hope,,,,need to have lab drawn on thursday to see what the cytoxen has done....amazed 1 gm iv can make me soo tired and give me sores in my mouth and gi issues....hoping my labs will be ok....i hope i can handle the rituxan and that it works....so any advise on the first dose of rituxan.....any pointers????...yes finally some good news:D

Sangye
07-28-2010, 10:35 AM
I'm glad they got it authorized (at least Aetna). If you need more rtx after this first round, it probably won't be for 6-9 months, so worry about that when the time draws closer.

For rtx, make sure you have someone drive you. The first infusion takes the longest-- about 6 hrs-- because they have to start it slowly and make sure you tolerate it okay. It seems to be a toss of the dice as to how it affects people. Some don't notice anything and are able to function normally the next day. Some (like me) are very weakened by each infusion and take weeks to bounce back. For me it's like getting a reverse blood transfusion, and each week is even worse. I start to recover 2 weeks after the round is finished.

LisaMarie
07-28-2010, 11:53 AM
Thanks....Sangye....I think it will be weekly x's 4 weeks but not sure...hoping it will be infused on friday to give me the weekend to recover...I am hoping for no side effects or minimal.....since everything else made me sick...maybe this will be my golden pearl.....I Hope and pray it puts me in remission and helps control my trach issues......i want you to know how much I appreciate all of you.....thanks

JanW
07-29-2010, 12:36 AM
What are your trach issues, Lisa Marie?

I'm sure your doc has explained that tracheal, subglottis and saddle nose issues don't run parallel to disease course (meaning that even when your disease is well controlled any of these issues can worsen on their own). You have to get your disease controlled, obviously, but your shouldn't be surprised or concerned if it does nothing for your trach (assuming your issue is scarring, not simple inflammation). My disease is actually being well controlled now (not remission) but my subglottis is re-scarring, exactly how Dr. Lebovics anticipated it would (though, thank God, not as quickly). They know that WG starts this problem, unfortunately they haven't found anything medically that will stop it.

LisaMarie
07-29-2010, 01:34 AM
What are your trach issues, Lisa Marie?

I'm sure your doc has explained that tracheal, subglottis and saddle nose issues don't run parallel to disease course (meaning that even when your disease is well controlled any of these issues can worsen on their own). You have to get your disease controlled, obviously, but your shouldn't be surprised or concerned if it does nothing for your trach (assuming your issue is scarring, not simple inflammation). My disease is actually being well controlled now (not remission) but my subglottis is re-scarring, exactly how Dr. Lebovics anticipated it would (though, thank God, not as quickly). They know that WG starts this problem, unfortunately they haven't found anything medically that will stop it.
I have trach stenosis subglottic....it was repaired in february when I was 90% occluded...and in May got sick and am stenosised to 50%...I remain on humidified air 75% of the time....have an isotonic hunidifer at work and at bedside ....the one at home i move around as i need too.....I get both scarring and inflammation...I am suppose to see My ototlarginologist with any ting og change but since the meds cause some of the same symptoms i am not always so Johnny on the spot in follow up.....the goal is to prevent a trach and keep my airway open.....I know it is a "side effect of the WG and not a indicator or the stage of WG...I just hate it....I also have right sinus, right jaw ...Thinking Right ear..right parotid glands and heart involvement per echo.....my ef is 55% but i have thickening of the septal wal in the left ventricle....i did get approved for 4 weeks of rituxan...yeah...but not sure when we will start ..Had my first IV cytoxan last week and would rather not take it......I just get so fustrated because some of the data that you read sounds so good as far as prognosis goes but them when you speak with people who are actually living with WG ...it s not a bright and bubbly as u may think....i wish i could go to the convention...but it is not finaicially possible so please share as much info as you can..thanks

LisaMarie
07-31-2010, 10:47 PM
yeah news for me...I finally have an infusion place...my hospital outpt clinic will give me my ritixan.....700mg weekly for 4weeks....not sure if i am starting in 1-2 weeks...they r even giving me the first dose.....if i did it at the doc office the contractual agreement would not cover the drug.....so finally.....good news .:..am still tired a lot and sore sang old sore achy bones labs on cytoxan were ok so hewould have to increase my ivdose so happy to be switching ...hope all is well with u all

elephant
07-31-2010, 10:54 PM
Good news LisaMarie. Cheers to better health!

Sangye
07-31-2010, 11:44 PM
Hot diggety, Lisa Marie. Sure glad you don't have to do more ctx-- it doesn't sound like a good drug for you, at least not in IV form. Better days are coming--hang in there. :)

LisaMarie
08-01-2010, 12:03 AM
thanks ....i am hoping it works welll for me even id the actually infusion may not be so pleasant the end results is remission....and that works for me...gonna hold off seeing my ololarginologist til my sched follow up in sept.....any one have a cure for dark circles under your eyes...mine are horrid at this time ....have a great weekend ...gonna decorate a cake for my son's baseball championship party....he is so excited and to tell the truth so am i

Sangye
08-01-2010, 12:26 AM
You might not have any side effects from the infusion-- many people say they don't. I hope you don't!

Dark circles are a sign of adrenal depletion. Not much you can do, just make sure you're not overdoing things. I hope you have a blast with your son's party. How sweet.

pberggren1
08-01-2010, 08:13 AM
thanks ....i am hoping it works welll for me even id the actually infusion may not be so pleasant the end results is remission....and that works for me...gonna hold off seeing my ololarginologist til my sched follow up in sept.....any one have a cure for dark circles under your eyes...mine are horrid at this time ....have a great weekend ...gonna decorate a cake for my son's baseball championship party....he is so excited and to tell the truth so am i

That is awesome Lisa Marie.

LisaMarie
08-03-2010, 01:14 AM
What was the start dose to start rituxan for you all?
I should have an answer today when I start.......I am suppose to start on 700 mg weekly for 4 weeks.
I have had no milk dud s for 2 weeks now......trying to fight the pred weight gain and urges
thanks:o

moyan
08-05-2010, 02:01 AM
Good Day all,
This is Siv's daughter Carmen, I am sad to inform you that my Mom passed away on July 16, 2010, from complications with her weggeners disease. Her last 6 months alive she was hospitalized and in great pain. I am sad she is gone , though happy she is a better place. Please inform any others that she may have known as well. Thank you!

Jack
08-05-2010, 02:16 AM
That is terrible news Carmen, I'm so sad to hear it.
I always loved the style of your mom's posts and I was missing them and her passing will be a great loss to the Forum.
My deepest sympathy and best wishes go out to you.

Jack.

DEE
08-05-2010, 02:19 AM
My deepest sympathy and best wishes to you too DEEx

Jack
08-05-2010, 02:23 AM
I have copied Carmen's post to this thread - http://www.wegeners-granulomatosis.com/forum/off-topic-discussion/713-where-moyan.html so that it can be found more easily.

elephant
08-05-2010, 02:45 AM
Carmen, we are here if you need us too. I am so sorry.

Doug
08-05-2010, 06:28 AM
Carmen ~ It is a great shock to hear this, yet she suffered quite a lot in the end. I will miss her posts as well. She was a fine person, with a good heart. Love to you and hugs and prayers.

pberggren1
08-05-2010, 07:10 AM
Carmen, I wish I could be there with you to comfort you. Your Mom was a huge benefit to this Forum. She will be dearly missed as well as her sense of humour.

Doug
08-05-2010, 07:25 AM
I'm having a bit of a time with Moyan's death, friends. Shortly after I posted, I began crying, and haven't been able to stop. I know WG can take us away, but Moyan's death just hit me. I will be back on the forum as soon as I feel fit.

pberggren1
08-05-2010, 07:28 AM
I know what you mean Doug. I am at the library right now and tearing up and people are staring at me.

JanW
08-05-2010, 09:34 AM
This is my second death since coming on the forum in January. I can't imagine that one could ever get used to this. It's awful but I think it's important to remember that not every WG patient survives the disease, which is why it is so important for all of us to take charge of our own health.

elephant
08-05-2010, 11:19 AM
It is a full time job, calling the doctors, going to medical records, blood work, scans, operations, peeing in a cup, spitting in a cup,.....then waiting for them to call back. Waiting to get in to see one immediately, I wish I lived closer to Cleveland Clinic.

Sangye
08-05-2010, 12:10 PM
Wegs takes and takes and takes...I will miss Moyan. She had a sweet and gentle heart.