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healthseeker

Imuran (Azathioprine)

10 posts in this topic

I have been diagnosed for over 10 years. I was mostly on minocycline, sulindac and nexium.

I was doing OK as far as I took them daily. Inflamation has been my main problem, and facial skin hardening that occur at the begining of the disease.

 

My Rheumatologist did some x-rays(last week) of my hands and found out there is damage. I do not know why he did not do one before. My last x-ray was on 2002. He found out the disease has progressed.

 

He was following me up thru blood test and CT scans of my lungs. I have some lung fibrosis. It seems stable so far.

 

Due to the damage (to my hands) he found out recently, he wants me to take Imuran.

 

I am not sure if this is worse (side effects) than the disease itself.

Please, anyone on this drug let me know the results, and why did they started you on this drug. Has it work for you? Is it dangerous? What are the potential side effects? Are there better options? :blink:

 

I am really scared about taking immunosupressants.

 

Any input appreciated.

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Welcome to the Forums, healthseeker. I am not a doctor, nor do I have any personal knowledge on immunosuppressants, but here is our page on Immunosuppressants and the articles on Imuran which may have some answers for you:

Azathioprine (Imuran). Patient Education. American College of Rheumatology.

A randomized unblinded trial of cyclophosphamide CYC) versus azathioprine (AZ) in the treatment of systemic sclerosis.After treatment there was a statistically significant improvement in the modified Rodnan skin score, attack frequency of Raynaud's phenomenon, and erythrocyte sedimentation rate (ESR) in the CYC-group, but not in the AZ-group. PubMed. Clin Rheumatol. 2006 Mar;25(2):205-12. Epub 2005 Oct 14.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Healthseeker,

Just wanted to share my personal experience with Imuran. I've been on it for a year and a half. I have been on a maximum dose (200mg) for nearly a year.

 

I tolerate it well and have no side effects from it at all. I have requent blood tests, every 6-8 weeks to watch for potential problems. I am on the high dosage to assist me in tapering off Prednisone.

 

If it weren't for the Imuran and Prednisone to battle my inflammation, I'd be on O2 24/ 7, if I were still here at all. My lungs were rapidly turning in to scar tissue and I could barely walk from the joint pain. I had no choice but to try it, and luckily I can take it, many cannot. I read all of the paperwork regarding the side effects, on Imuran and my other medications as well. I know there are risks, but they are risks I take in battling Connective Tissue disease, Crest and Interstitial Lung Disease.

 

Do you see a Pulmonoligist for your PF?

Cheryle

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Healthseeker,

 

I am not on the immunosupressant you have been recommended but have been on one for 11 months now. I was concerned about side effects etc but to date I can't pinpoint any to the drug. It's Cellcept and in view of the recent warnings I spoke to my slcero nurse about coming off. She made a very valid point being how worse would I be without it left to the mercies of this disease unaided? In answer I would be much worse of than I am at present so I keep taking the pills.

 

The important thing is to have regular blood tests that are monitored whilst you keep a watchful eye an your body should you decide to take the drugs.

 

You know you best and will make the right decision for you.

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Cheryl:

 

Yes, I also see a pulmonologist. But my Rheumatologist was taking the lead because most of my problems (pain and inflamation)are related to my joints. My lungs have also been experiencing problems but at a slower pace it seems.

 

I was on milder drugs until now. I am not sure why he wants me on this drug. Just wandering if there is anything less invasive available.

 

Thank you very much!

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Hi Healthseeker ~

 

Welcome. I have been on Cellcept for 2 1/2 years and have been tolerating it very well. My lungs have remained stable. I too was worried about taking immunosuppressants but the alternative (not taking it) was even more worrisome.

 

I have young children of my own and taught preschool out of my home. I thought I would catch every bug known to man, as these little guys are porfessional germ spreaders.

 

I have been very surprised that since being on Cellcept, I have actually only had a couple of mild colds and only once a cough that lasted about 5 weeks. With all the little germ spreaders in my home, I became a professional hand washer so I'm sure that helps.

 

Jefa gave some great links. Someday I will study my materials and learn to do the same and maybe be as helpful. Until then, I offer you my humble experience, sincere sympathy and (((((((((cyber hugs.))))))))))))


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Hello Healthseeker

 

Initially I had a blood test once a week for a month, then every two weeks, then every 4 weeks. I complied initially but then did not and went 6 months between tests. I am now back to regular which is now every 8 weeks. So far so good and if they had not been it would have been my own fault for not complying!

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Welcome healthseeker!

 

I've been taking Cellcept since February of this year. I starting getting flare-ups on my rt. arm starting from my wrist up to my elbow. Last August I noticed tightening on my rt. wrist and thought nothing of it. Then the skin started tightening further up to the elbow. I also developed an ulcer on my elbow and lost some range of motion on my rt. elbow, compared to my left. When I mentioned this to my rheumatologist. she immediately put me on Cellcept to stop the recurrence of scleroderma. (When I had a stem cell transplant in 6/2000 they reiterated this procedure would not guarantee or prevent a recurrence of scleroderma. After 8 years of no symptoms, scleroderma was trying to make a come back.)

 

Since taking Cellcept, my skin has loosened up and I've regained some mobility back on my rt. arm. Like Barefut, amazingly I haven't had any colds or infections. (I also handwash :D !) So far, the scleroderma hasn't progressed any further. I see my rheumatologist. ev. three months and have regular blood work done. This is the only option available to me right now. My rheumatologist. reassured me I shouldn't worry as she has other patients who have been taking Cellcept for a long time and are doing fine.

 

Good luck with your decision! You are doing the right thing in asking questions.

 

 

Razz


Live well, Laugh often, Love much

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