janey

Question About Immunosuppresants For Fibrosis

26 posts in this topic

Dear Janey,

After three years on Methotrexate I had 6 monthly treatments of IV cyclophosphamide last year and am now on Imuran. My lungs have stabilised. My IV treatment was suspended for a while because of low sodium levels in my blood. It turned out that this was partly because I was following instructions too devotedly and drinking too much water!

 

I was pretty much out to it after each treatment for 2-3 days, my hair thinned, but I did not suffer much from nausea. My dentist recommended using a mouth wash 3 times a week to prevent mouth sores.

 

However now my other sclero symptoms (skin, stiffness, GERD, dry mouth,) are worse and I believe (and my rheumatologist agrees) that Methotrexate was more effective for these symptoms than either of the other two. I take 10mg Prednisolone to alleviate some of the discomfort.

 

As a few other people have mentioned I have been virtually infection free since starting immunosuppressants, better than before.

 

Cellcept is not really available here (Australia) but both my rheumatologist and lung specialist were adamant that even if it were it was not an option. Unfortunately I can't remember why.

Best of luck,

Patsy

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Hi Janey,

 

I don't have any experience with any of these drugs but I do have a friend on Cellcept so I asked her. This is what she said:

 

"The quality of life question kinda ties into the others so I will answer the others first.

According to my lung specialist.... he seem to think that it has stabilized my lungs and probably the rest of me. Since this drug is an immune-suppressant...it suppresses your whole immune system...and if your immune system is in fast forward like mine...its good for the whole disease. I also have pulmonary hypertension...like the PH drugs....they only control the lungs and are more expensive than the Cellcept...which is pricey in itself...that is why my dr choose Cellcept for me.

 

I think it has helped with SOB and though I don't exercise much...I can vacuum without getting too much out of breath now.

I have been on the med for exactly a year this month. It can take a few weeks to 2-3 months to see results. My lung dr did constant PFTs to see how it did. Some were better than others. I haven't been to my dr in 6 months....I go in 3 weeks. This was the first time he let go for this long...which is a good sign.

I haven't had any side effects...but you have to follow the directions on taking it.

 

I would recommend this med and you can stop taking it at anytime."


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Janey,

 

I don't have any input for you on this topic, but wanted to say I was sorry to hear about your cardiology appointment. As Lisa said, "If it isn't one thing it is something else!". UGH! So, why the coumadin? I am glad that your husband is being optimistic....you are lucky to have such a staunch supporter on your side! And, as always, your positive attitude is amazing and so encouraging.

 

Warm wishes,

Heidi

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Thanks Patsy and Sweet for the additional information!!! This is all GOOD STUFF.

 

Patsy, MTX was my first drug after diagnosis and it did a great job of nipping a very active disease in the bud. My skin thickening never went past the wrist, it correctly the swallowing problem and slowed my polymyositis (to name a few). I went off it when diagnosed with fibrosis because MTX can cause fibrosis. Then I tried Imuran followed by oral cytoxin and both have yielded serious infections. So I'm still looking.

 

Heidi, my pacemaker check last week showed over 800 atrial fibrillations in 6 months. Two weeks ago, one lasted 20 hours! Hence the coumadin. Hopefully, if the increase in meds stops the fibs, I can come off the coumadin.

 

Big Hugs to all,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Janey,

 

I guess I don't understand the physiology of the atrial fibrillations and the role of coumadin. I always thought coumadin was a blood thinner and so I was wondering how that would help with the a-fibs. I sure do hope that your new meds work and they get those A-fibs under control (and quickly!).

 

Warm wishes,

Heidi

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Heidi,

Coumadin doesn't help with the Afibs, but it does help prevent the blood from clotting inside the Atria during a fibrillation. During a fib, a lot of the blood doesn't get passed into the ventricle, so by staying put, it could clot. If the blood clots and a clot gets released into the blood stream, well - you know...

So yes, Coumadin is a blood thinner. Sorry for the confusion.

 

Big Hugs,


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Hi Janey,

 

Thanks for the explanation....now it makes sense! I do hope those A-fibs clear up for you!

 

Warm wishes,

Heidi

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Hi Janey,

 

I'm curious........ do you know when you're having fibrillations or not? Are they just picked up by the pacemaker, or does that happen with the "small" ones, and you can still feel the "big" ones?

 

A year or two back my renal doctor was hearing some and considered putting me on Warfarin, (same as Coumadin), or maybe just aspirin. They seemed to go away, so we haven't needed to revisit the problem. Hope we don't either, but I was wondering if maybe I still have them though without noticing!

 

Warm hugs,

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Janey you are certainly fighting hard!!!!

 

keep it up. you provide so much to this forum and everyone who's going through one thing or another is helped by you!

 

Reading your post, repsonses, and knowing your story and many others. It's fair to say immunosuppressants are hard on the body. And risky.

 

Just wondering if you've fully explored stem cell transplants, and or monoclonal antibody therapy? I know your heart is a limiting factor... but there are conditioning routines that are much milder on the heart (alemtuzumab, fludarabine, ATG, etc).

 

Also many older patients with severe heart problems undergo stem cell transplants for Amyloidosis. Of course they have no choice, but the risk is manageable.

 

Just thought consultation with some experts in stem cell transplantation for people with heart damage might be worthwhile.

 

You know some doctors say one thing, but there's always another Dr's side to consider.

 

looking up and wishing you positive things.

 

Michael in Florida

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Hi Janey

I'm a bit late adding to this topic but it's been 8 months since I finished my Cyclophosphamide infusions. The fibrosis has stabilized on my lungs since then (although they can not attribute it to the infusions necessarily) but it did nothing for my skin progression. I also felt like it took my body a long time to come back to "normal" - I really felt knocked around from it. Nausea and hydration is minimised by what they give you at the time, ie, mesna, nausea pills.

 

They see no reason to do another cycle at this stage.

What's frustrating is that they can not ascertain whether it's the Cyclo, weather or natural progression which is stabilizing the lungs - this, to me speaks volumes.

 

If they wanted to suggest I do another 6 month treatment I would decline. Too many toxins in an already struggling body for my liking - that's my opinion.

Good luck, Megan


Kiwi

 

Diagnosed 2006 - Diffuse Scleroderma

Skin and lung involvement

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Finally getting back to your responses. Sorry it took so long.

Sherrill - I don't feel the short fibs, but "at times" I do know that I'm in A fib with the longers one. As you know I already cough a lot, but when the cough become uncontrollable, it usually indicates a fib. I have discovered that oxygen can "usually" stop it. If the fib is a really high heart rate that can't be controlled by pacer, I get a strong pulsing in my neck and pounding chest. My pacer is not a defibrillator so it can't always stop the fibs.

 

Mike - my research is increasing on the stem cells and finding more about my eligibility. I haven't explored monoclonal antibody therapy, so thanks for mentioning it. I'll take a look.

 

Megan, You're right, with all the meds and stuff we're going through it's hard to know what does what. I'm glad your lungs are stable. Wish you knew for sure what to attribute it to. I haven't had a chance yet to talk to the pulmonary doctor about these treatments, but I see her on Wed. Right now I am leaning toward the IV cytoxan because of my recent experience with the oral. I'm getting my IVIg treatments this week so I hope they reduce some of the fatigue that I'm experiencing for not being on an immunosuppresant. We'll see in a week

 

Thanks again to everyone for your valuable feedback.

 

Big Hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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