hello

[kulharv]

hi, i was just diagnosed oct 26, 2010 with WG after 1 yr of being treated for rheumatoid arthritis
currently on prednisone and have had 1 treatment of cyclophosphamide with another the next one on the 16th.
Can anyone let me know what to expect?
my main problem has been with my joints, hands & feet, sinus, ears and lungs

any info would help

thanks

[pberggren1]

Are you getting oral or IV cyclophosphamide? Has your doc mentioned Rituxan? What meds are you on right now and what doses? Are you seeing a Wegs specialist? If not, you should be or at least have your doc consult with one listed with the Vasculitis Foundation. Welcome to the Forum.

[kulharv]

Good Morning Phil,

Thank you for getting back to me.

I am getting gthe cyclophosphamide by IV treatment. the doctor had mentioned orally but didn't recommend it as it would stay in my body all the time whereas the infusion wouldn't. I am currently taking 50g of prednisone 2x per day, actonel 1x month, biactrim 3x per week and tecta daily.

My specialist is a rheumotologist and i am not aware of any WG specialists in the the Lower Mainlaind. Do you know of any? My area would be the Vancouver, Burnaby, New Westminster, Surrey areas in BC

The doc did mention a drug that was not covered, expensive but he didn't go into detail as he wanted to start this IV treatment first. I will be getting 3 treatments every 2 weeks and then monthly after that for how long i dont know at this time. Also my prednisone dose will start being lowered after my 3rd treatment
I have been on methatrexate but reacted to that after being on it for a few months and developed a cough that lastgd 4 months, developed phuenomia and was seeing ENT specialits, respiratory specfialts as well who took me off the methatrexae asap. Then after my diagnosis finally at the end of |Oct, the rheumy put me on Aziathoprine which caused my liver tiver to react and that was stopped as well earlier this year.
My dose of prednisose was gradually being lowered since the end of Ocgt but when | reached a dose of about 10 mg,, my joint pain appeared and gradually it was to point that I couldn't get out of bed without assitance. Also, I started coughing up blood one morning only to discover that my chest xrays showed phenumonia again and possible lung inflammation. Thats when the rheumy increased my dose of prednisone to its current dose. I have a constant stuffy nose, major night sweats and mouth sores which I don't know if that is from the WG?

Sorry for rambling on but I get confused and then just keep going.

Any guidance that can be given would be greatly appreciated. I just want to have some sort of normalcy in my life after about 1.5 years.

Once again thanks for getting back to me and I look forward to hearing from you again and anyone else that may be able to offrer my some more insight.

Thanks and good luck to everyone for their treatments!

[NicShaf]

Hi kulharv, welcome to the group.

I am on oral cyclophosphamide, so I don't have much advice for what to expect from the IV form. The risk of the oral Ctx is that it goes through the bladder, and can cause problems there, but drinking plenty of water helps this.
On a possitive note, I started feeling better about 4 weeks into my Ctx treatment. My nasal swelling started going down, and I could breath through my nose again...this is the most outstanding symptom I can recall at the moment. Actually, I think it started getting slightly better when I stared Preds, and significantly better with the Ctx treatment.
Although, while feeling better from the symptoms that Wegs had caused for months, I started getting the side effects of Preds about 6 weeks into taking it. Preds has some side effects that are not fun at all, but they do get better as you begin to taper.
I hope everything starts working for you and you can start feeling better. :)

[kulharv]

Thanks Nicole,

Yeah, prednisone, I've been on it for over a year and whenever I gradually reduce the dose, they have to up it again, hence this new treatment.

Did you have any side effects from the oral cyclophosphamide?

Once again thanks for the info an dhope things are going well for you!

[NicShaf]

I would say tiredness and a little nausea from the oral cyclophosphamide, but it's hard to tell if the nausea was from the Ctx or the Preds. At frist, I think it was the Preds, and it felt like acid reflux, but now that I've been tapering Preds, it feels more like nausea, and I'm assuming its more the Ctx now. I think those are really the only side effects that I've experienced.
I'm at 150mg of Ctx daily, which is an average dose based on the patients weight, I think 150mg is the middle ground.
Things are going pretty well for me, thanks:) I hope things start going well for you too.

[Sangye]

If you're coughing up blood along with those other symptoms, it's likely your lungs are hemorrhaging due to Wegs. I suggest you get a lung CT asap. An x-ray will often show "atypical" pneumonia but the CT will show the real thing.

[pberggren1]

I don't know of any Wegs specialists in the Vancouver area but you should at least have your doc consult with one listed with the VF Foundation.

[kulharv]

Thanks Phil & Sangye,

When I was diagnosed, my specialist, did a check of my ANCA levels and that is how he diagnosed me.
I was planning a trip to India that week and he suggestged that I still go, which I did and took my results with me. I consulted a vascular surgeon, rheumotologist and another specialist while there and they all agreed with the diagnoses. One specialist that I saw had said he used to primarily focus on just WG patients that changed as there were not that many cases that came his way.

I was to have CT scheduled by my ENT speciailist but he's an idiot and hasn't got back to me for 2 months yet. I will call to followup.

I get regular blister like things on the sides of my tongue and now have had a 'hole'/sore of some sort on the inside of my cheek. Its been there since the end of April and doesn't appear to be getting any better. I don't know if this is a result of the prednisone or WG, also if the reason for not healing is due to the IV of cyclophosphamide.

I am also short of breath but I think that is due to all the weight that I have gained since Oct . It is really getting frustrating!

I appreciate all the info that has been provided to me and look forward to hearing from anyone.

Thanks for letting me share.

[kulharv]

Hi Phil,

do you know the name of the WG specialist in Edmonton, since there isnt one in my area, I don't have problem flying to Edmonton.

thanks.

[Sangye]

I get unusual sores on the sides of my tongue when the Wegs is more active. They usually aren't even visible--maybe a little redness at best. They feel like a canker sore that is deep in the tissue. They form in the exact same places every time. I have no idea what it is, but it's an excellent indicator for me.

[marta]

My specialist is a rheumotologist and i am not aware of any WG specialists in the the Lower Mainlaind. Do you know of any? My area would be the Vancouver, Burnaby, New Westminster, Surrey areas in BC!

Hey kulharv,

Check out this link, it has the names of doctors on the new CanVasc group and they all specialize in vasculitis (this is a good page for anyone in Canada looking for a doctor who specializes in vasculitis and would not be weireded out about consulting with other specialists). My doc is part of it. There are five in the Vancouver area (one of which is a pediatric doc) so four you can choose from. Hope this helps you. Sounds like you need someone who is very familiar with this disease as it doesn't seem to be in control yet. My doctor's name is Dr. Yacyshyn, but like I said, there are coleagues of hers in the Vancouver area. Here's the link: http://www.canvasc.com/InformationCanVasc.htm

I took the oral ctx and at first I found it knocked me out like a hammer for about a couple of hours after taking it, but within a month my body got used to it, and nothing out of the ordinary (I actually missed the 'knock outs' as I got some great, much needed, sleep).

[drz]

I get unusual sores on the sides of my tongue when the Wegs is more active. They usually aren't even visible--maybe a little redness at best. They feel like a canker sore that is deep in the tissue. They form in the exact same places every time. I have no idea what it is, but it's an excellent indicator for me.

I have had sores in the mouth too. As I learned here it helps to use toothpaste that does not have SLS in it although that is hard to find. Some brands are labeled for use for people with cold sores and those don't have the SLS ingredient. Frequent rinses with baking soda rinses seem to also help.

Sometimes the sores are bigger and other times it feels more like when you bite your tongue or check by mistake or burn it with something hot except the feeling lasts much longer.

[Sangye]

The sores I get aren't open sores. I actually wonder if they're some type of inflamed nerve ending.

[kulharv]

hi,

just had my first set of lab work done 10 days after my first IV cyclophosphamide treatment a lot of flags that went up.
anyone please let me know about the following:

Leukocytes
A
LARGE
Urine MicroscopicWBC
A
11-30
0-3
per HPF
RBC

Unable to enumerate RBC's due to presence of amorphous crystals.
0-3
per HPF
Epithelial Cells

Many

per HPF
Test Comments


Calcium Oxalate crystals present.
Amorphous crystals present.
General ChemistryCreatinine
H
92
45 - 90
umol/L
Estimated GFR
L
56
> 59
mL/min/1.73sq.m
Note: eGFR based on serum creatinine, age and gender. This
result indicates reduced function, needs further
evaluation and follow up: see
Clinical Practice Guidelines and Protocols in British Columbia (http://www.healthservices.gov.bc.ca/msp/protoguides/gps/ckd.pdfALT)

30
< 36
U/L

Report Status: FINAL RESULTS

1/1

these results are to determine the dose of next treatment which is on monday the 16th. I'm a bit worried but the results! please help

[marta]

Hi Kulharv,

I also get my results back and whenever antything was flagged I'd look it up online. It helped alot. Here's one site that I went to quite a bit until I got the hang of my particular results.
Understanding Your Tests (http://www.labtestsonline.org/understanding/)

Then if there was something on there that was not on the above site I would just google it to get a better understanding of what the norms are and what functions it is responsible for. Hope that helps.

[Red]

Hi Kulharv,
I have gone though 6 IV cytox tretments very tired and tummy upset have pills for that also have sore on tongue dr says it is cytox persciption mouth -wash for that also had shortness of breath now its going away i think.
My treatment of IV cytox was by weight only once a month 6 times just had 6th 5 days ago.

[kulharv]

Hi Red,

Thanks, that helps. i just had my 2nd treatment today. Treatment went well but am extremely tired and don't know if its the treatment or the prednisone that is keeping me up as I just can't sleep. Max is 4 hours. The sores have finally started to get better but shortness of breath is still there.
In the beginning did you get the treatments every 2 weeks or so and then eventually monthly? do you feel that it has helped or do you see any changes?
My specialist has me every 2 weeks for 3 treatments and then monthly after that anywhere from 3 months to a year. My prednisone will not be tapered down until after my 3rd treatment.
I have had excessive weight gain, very frustrating as I was already big to begin with!!!
Did you have any hair loss or thinning of your hair and if so when did it start?
Sorry for all the questions.
Thanks for helping!
Hope everything goes well with you?

Harvi

[Red]

Hi Kulharv,

To answer some of your questions i could not sleep on pred i was on 60mg for 2 months and taperd down now 20mg as for cytox treatment 1 treatment every month for six months now had eye flair dr says i might need more.
After my 4 th treatment i started to feel better on and off it is a daily feeling for me some good some not so good 100% better than 2 months ago.
Cytox makes me very weak and tired for a week and gets better after that if you are getting cytox every 2 weeks you will be tired for awhile.
As for my hair did not lose any i cut it short be for treatment and now long i think i will keep it long because i gained a lot of weight was 6'1-247lbs now 6'0 300lbs ouch i no that i will lose it as for the long hair looks better on a puffed up face and neck lol.
I hoped this is helped and everybody side affects are different if you have anymore ? please ask and if you want to talk vent what ever i no nobody really understands what we are going though except us weggies lol.


Brad

[kulharv]

thanks Brad.

have you been going to work or have you been off? I've been since my first treatment, I missed the first 3 days and then went for about 4-5 hours each day. I sit in front of computer and deal with the public everyday, not to mention that I am always talking. i am very exhausted after those few hours that when i get home i just wanna lay down and forget about maintaining the house, cooking and cleaning. Thank god for cleaning services!!!
I know that compared to what some others are going thru, mine seems pretty low key but you right that no one really understands. its extremely frustrating!

I thank you for listening and letting me vent!

Take care!

Harvi

[Red]

I have been off work since july 2010 got sick feet really bad numb and nerv pain really bad was on 4 differant meds for pain now getting better feet are still numb.
i have self employed for 15 years now and i had it good now i dont lol i am the house dad now i do all cooking and cleaning ect. my wife has very good job and good insurance so i am lucky though my wife does not understand i am a piece of
**** for getting sick she says or she whishes i would die right after my chemo treatments so she could collect on insurance we are headed for divorce but i can not do any thing right now have to get heathy we just had fight so i am venting .


Brad

[marta]

Oh Brad, that's sounds like a $#!? load to have to deal with emotionaly on top of what you have to deal with with Wegs. I'm so sorry that you have to listen to the person that is suppose to support you in this ordeal ("for better or for worse...") say such awful awful things. That is absolutely horrible. I know people say things without thinking during arguments but she should be ashamed of herself. Sorry! I'm sure that by the time you read this, things might have blown over and she might be nice to you again, but I'm just blown away. Sending you all the positive energy I can find.

[Psyborg]

I have been off work since july 2010 got sick feet really bad numb and nerv pain really bad was on 4 differant meds for pain now getting better feet are still numb.
i have self employed for 15 years now and i had it good now i dont lol i am the house dad now i do all cooking and cleaning ect. my wife has very good job and good insurance so i am lucky though my wife does not understand i am a piece of
**** for getting sick she says or she whishes i would die right after my chemo treatments so she could collect on insurance we are headed for divorce but i can not do any thing right now have to get heathy we just had fight so i am venting .


Brad

That's horrible. It's not like we don't already make ourselves feel bad in some cases :(

[kulharv]

hi brad,

sorry to hear that you're having problems at home and its ok to vent. it lightens the load a bit.
i'm sure that she is just frustrated and its is all unknown.
all you can do is focus on yourself first and then everything that happens happens, good or bad,unfortunately
wish i could say something otherthan be strong and you will get thru this

sorry for the late reply, this time after my cyclo treatment i have been extremely tired and didn't have the energy to reply.

vent anytime you want brad, we're listening!

take care

harvi

[gurinbasra]

After taking 6 months of infusions of Ctx, I didn't notice any hair loss, but then I had six more months of Ctx but orally and from that I noticed about one third hair loss! Still on Mtx and I've noticed it's not all back, but I was the one with a full head of thick curly frizzy hair so I'm not sad about having manageable hair now. As for the mouth soars, I still get like blood filled slug looking things in my mouth - usually if I eat something vinegar based, then they pop and the blood pours out and it heals over. I'm told that it's from the Mtx.

Gurinder

[kulharv]

brad,

i have just got the numbness and nerve pain in my feet. What had they given for it and how long did it last?
It is so annoying!!! I am on 2400 mg gabapentin and percacet for the pain along with my prednisone which was bumped up to 60mgs.

Hope things are going welll as can be for you as its been a while since I came on.

Take care

Harvi

[Dryhill]

Kulharv,

Firstly welcome to this very exclusive forum, the only place with an entry requirement of being ill with a disease no one has ever heard of!

I have been on IV Cyclophosphamide since late December 2010. I started out like you having it every two weeks, after four sessions I went to a three weekly cycle but after a while I started getting ill again and it was decided to restart treatment. I am currently having Cyclophosphamide every three weeks and expect to go to a four weekly cycle very soon. As to the side effects:-

HAIR LOSS: Some complain of hair loss or thinning. Personally I have had no noticeable change (mind you I have been losing my hair for many years).

SICKNESS: All I have experianced is feeling nauseous. Mind you I am given an IV anti-sickness shot at the same time as the Cyclophosphamide:

TIREDNESS: Ooooooooh yes! The next two or three days following treatment I could sleep for England (in fact I am trying to get this as a new sport in the 2012 Olympic Games - I am certain of a Gold Medal). As a taxi driver there is no way I can work. I have learnt not to hold any drinks in my hand when sitting down, it seems the cup does not want to stay upright when I fall asleep. Must watch tv programmes MUST be recorded if I want to see all of it. My neighbours think it very funny that on one occasion I went to sleep whilst talking to them.

TASTE: After the third or fourth dose I experianced a mettalic taste in the mouth. To start with it was easily over ridden by a drink of water, but with time I needed strong tasting foods to mask the taste. But for the last four months it has gone away, or I no longer notice it.

Are you also receiving Mesna with your Cyclophosphamide treatment? Again I receive this by IV and am also given two capsules to take four and six hours after treatment. I believe the Mesna is to protect the kidneys from the chemo.

You are on a strong dosage of Pred are you taking anything for the side effects? I am on Adcal/Natecal, which is a calcium carbonate plus vitamin d3 tablet twice a day plus once a week I have 70mg of Alendronic Acid. These two items are to protect the bones from the wasteage caused by Pred. I was not placed on Aledronic Acid until after I had a Bone Density Scan which showed that there was some bone thinning despite being on the calcium/D3 tablets.

I hope that lot is of some help.

[kulharv]

Hi Dryhill,

I finished my cyclo-mesna treatments Sept 23 but that whole week i was not well and it turned out that my lungs were hemorraghing and ended up in the hospital for 11 days at which time they started RTX treatments. I have had the initial 4 and do feel better but new issue that is arisen is the numbness in my right foot and periphal neuropathy in the same foot. I have had just had a bone denisty scan done and hopefully will hear from my rheumy the results this week.

My foot and now my leg are numb, tingline and emitting a great deal of heat. My prednisone has been bumped up to 60mg as well as 2400 of gabapentin. I've heard from others that it could take a few months for this to get better.

Thanks for the info that you gave.
Hope that you are doing well.

Take care.
Harvi

[RudiK]

Hello Harvi, I was "hit" with total numbness in both feet from the ankle on down two months before I was diagnosed with WG. I'm now in remission and I'm on 7.5 mg Pred, 150 mg Imuran (the generic version) and 200 mg Gabbapentin. I don't have any pain as such, but when I walk it feels like hundreds of needles are poking me inside the feet in the area where the toes "attach" to the feet and around the ankle area. The doc just bumped the Gappapentin to 200 mg, maybe that will reduce the feelings of needles poking me. We will see.
Rudi K

[kulharv]

hi Rudik,

my gabapentin was bumped up from 200 to 2400 mgs the pain is mostly the nerves and my rheumy said it was neuropathy. I have same feeling as you do when I walk. My prednisone has been bumpled up and will be reducing every 10 days (not fast enough).

Glad to hear that yours is now better and gives me hope.

Thanks for getting back to me.

Take care

[Red]

Hi kulharv, I am doing well, but sadly enough it sounds like you're not doing so well. :( My numbness in my foot and pain in my feet started about a year ago when i was diagnosed. I was on a ton of medication such as oxycotin , nepraxin, advil, gabapetin, but nothing seemed to do the job that it claimed it would. The gabapetin took about 6 weeks for the effects to kick in and for it to start working, I have been on 300mg 3 times a day, i still have pain and swelling but thankfully it is tolerable and i can start working again!
I hope this helps, ice packs seemed to dull the pain for a small period of time, also elevating my feet seemed to eleviate some stress that they were undergoing.
I hope you feel better
-brad

[kulharv]

Brad.

Thanks, that gives me a bit of hope. The pain along with the numbness is getting unbearable. Can't sleep, don't know which way to put my foot or leg so that the pain is less.
I'm hoping that the gabapentin will kick in soon as I hate to keep taking the percacet for the pain as that is a whole different issue.

So, I will keep taking the gabapentin and pray that it works soon. I've been on it for about 2 weeks.

I will try the ice pack as well.

Once again thanks for the feedback Brad.

Take care.

[delorisdoe]

Brad.

Thanks, that gives me a bit of hope. The pain along with the numbness is getting unbearable. Can't sleep, don't know which way to put my foot or leg so that the pain is less.
I'm hoping that the gabapentin will kick in soon as I hate to keep taking the percacet for the pain as that is a whole different issue.

So, I will keep taking the gabapentin and pray that it works soon. I've been on it for about 2 weeks.



I will try the ice pack as well.

Once again thanks for the feedback Brad.

Take care.


Ice is the only relief i can find for wegenrs pain.

[kulharv]

Delorisdoe,

Ice pack it is! Anything to get relief even if it is freezing!

Thanks.

[pberggren1]

Ice is the only relief i can find for wegenrs pain.

Ice helped me as well the odd time but most times it was whisky, vodka, Baileys, or a good cognac, or a combination of all 4.

[kulharv]

Hi Phil,

I don't drink but i'm pretty tempted now! lol I guess whatever it takes. At this time all my options are open!

Thanks.

[pberggren1]

Now I just bear with the pain. I only took drinks about 4 times when the pain was bad. And I usually took a couple of large drinks, like about 10 ounces or more of straight whisky, etc, then mixed it with 8 T3s and 8 extra strenth gel cap ibuprofen. Now when Sangye reads this she is going to flip out. But I had not slept for 5 or more days and the pain was very intense and I just wanted to sleep.

[pberggren1]

Even Batman needs a good stiff drink now and then.

[Al]

do you know the name of the WG specialist in Edmonton, since there isnt one in my area, I don't have problem flying to Edmonton.

thanks.

You might also ask Marta, who is between Edmonton and Vancouver. She seems very happy with her specialist. If you can't find her email, here is ner website: Weggies Unite (http://weggiesunite.blogspot.com/)

Al

[kulharv]

Phil,

That was quite the dose of whisky and pills! But I guess you gotta do what you need to to get some zzzz's that are so needed.

I totally understand as I can't sleep either.

Hope things are going well for you as you have had it pretty rough!

Take care and thanks for the advice.

[kulharv]

Al,

I am now very happy with my rheumy and would gladly recommend him to anyone in the Lower Mainland in BC.
Very knowledgeable about WG.

Thanks.

[Al]

Phil,

That was quite the dose of whisky and pills! But I guess you gotta do what you need to to get some zzzz's that are so needed.

I totally understand as I can't sleep either.

Hope things are going well for you as you have had it pretty rough!

Take care and thanks for the advice.

Ah, Harvi....roaming the halls again/ Sleepless in Surrey? Not sure if I would recommend Phil's patented elixer. Sound's pretty stiff, and may make it way to easy to sleep in the morning. Yet we do what we have to. Sleeping is good. Sleeping is necessary. But my own technique involves a certain amount of insomnia--I prefer going to sleep with a clear mind rather than the fog of Jack Daniels. (Probably the kidneys do as well.) Yes, insomnia is a lonely sport, but, for me, a rewarding one!

Al

[pberggren1]

Al,

I am now very happy with my rheumy and would gladly recommend him to anyone in the Lower Mainland in BC.
Very knowledgeable about WG.

Thanks.

Ask him how many Wegs patients he has seen in his career. If he is a Wegs specialist he will have seen at least 200. My doc has seen over 1,000.

[kulharv]

Phil,

I will ask next time I see him in a couple of weeks.
I thought you were joking with the drinks........your were serious!
Sorry can't take your advise on that. I drink would probably knock me out.


al,

mY poor husband, bless him, wakes up the minute I start shifting about and keeps me company, no matter how little he has slept and that he has to go to work the next morning.

I'm off work right now so it really doesnt matter and can sleep during the day....yeah right a real lie.

anyways, time to try to get some sleep before the percacet wears off and pred kickes in.

nite nite to all

[drz]

Some of the antidepressant meds can be quite effective as both a sleep aid and pain reliever. Many family doctors use them that way. They best used without any alcohol though. Adding any drugs to alcohol can be very dangerous as Phil well knows so we don't need to remind him or anyone else here.:unsure:, do we?

Sometimes it seems a little chemical aid seems needed to help one over come the sleeplessness caused by prednisone or other steroids.

[pberggren1]

Some of the antidepressant meds can be quite effective as both a sleep aid and pain reliever. Many family doctors use them that way. They best used without any alcohol though. Adding any drugs to alcohol can be very dangerous as Phil well knows so we don't need to remind him or anyone else here.:unsure:, do we?

Sometimes it seems a little chemical aid seems needed to help one over come the sleeplessness caused by prednisone or other steroids.

Don't worry, my drug and alcohol experimentation days are over.......lol