Bird Lady

New drug

8 posts in this topic

Hi everyone, Well we've tried Cellcept (mycophenolate mofetil) which didn't help and 12 months of IV Cytoxan (Cyclophosphamide) which seemed to help for about 9 months. Now my lung function is worsening. I'm hoping for a stem cell transplant but my doctor currently has me on a drug called Azathioprine. Has anyone ever heard of it or had any experience with it? It's an immunosuppressant drug used for kidney transplant patients. Birdman


Hugs for All,

 

Julie (Bird Lady)

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Hi, Birdman, it's good to hear from you. Sorry you are still having difficulties with your lungs. I know there are several people on the site who have had experience with Azathioprine (Imuran is one drug company's name for it). Hopefully they will share their experiences. Here is our page on Immunosuppressants which has a section on this drug:

 

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

 

Twelve-month azathioprine as maintenance therapy in early diffuse systemic sclerosis patients treated for 1-year with low dose cyclophosphamide pulse therapy. This study suggests a role of AZA in maintaining the improvement induced by low dose pulse CYC in early dcSSc, making it possible a short duration of treatment at a low cumulative dose of the drug. These results, however, await confirmation in controlled studies. PubMed. Clin Exp Rheumatol. 2007 Jul-Aug;25(4):613-6.

 

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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I have taken that medication for a couple of years now. My rheumatologist and pulmonary doctors agree that is a good drug to help suppress the pulmonary fibrosis. I have blood test every 6 weeks and thankfully have never had a problem. I feel fine on it and so far it seems to be working. I do hope it works for you too!

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Birdman,

 

It was really great to see a post from you. I don't have any experience with that particular drug. It looks like Jefa gave you some great information though and I hope it helps.

 

Thinking of you.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Birdman,

So sorry to hear that the cellcept and cytoxan hasn't helped your lung function. It's amazing how these drugs work from some and not for others, but then I guess it's all goes back to what is actually causing the progression of the disease in each individual. I've been on cellcept now for 2 years and it's stopped the worsening of my lung fibrosis. I hope the Imuran works for you. Jefa provided a good link so please take a look at the articles there. I'll see if there are any study releases within the last 2 years.

 

I did take Imuran for 3 weeks, but couldn't handle the side effects. Couldn't handle cytoxan either. Apparently, Imuran is used sometimes after a person has had cytoxan treatments, so hopefully it will work for you. We'll all keep our fingers and toes crossed.

 

Great hearing from you.

 

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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Birdman,

I am sorry to hear that your lungs are not holding. Mine continue to drift downward slowly.

 

Yes, I did the IV cytoxan.

Yes - I tried the Cellcept -- couldn't handle it -- it made me bleed.

Yes - I have had a RX for Imuran but decided not to take it.

 

Instead I did the clinical trial for Gleevec (leukemia drug) and I took Gleevec for a year. MY PFTs remained the same or slightly better year over year and my skin did great. I think I went from a skin score of 21 to 10/11. Also, the skin biopsy showed an improvement year over year. I am now trying to get into a follow up study. I am not sure if all the Gleevec clinical trials have a follow up study but the study at Hospital for Special Surgery in NYC has a 2 year follow up where you can get the drug (Gleevec) for another 2 years after you end the trial. Which is great as it normally costs $5,000 a month for the drug if you don't have insurance or can't get insurance to cover it. Johns Hopkins will prescribe it and work to get insurance coverage. On a separate note, Mayo clinic studied Gleevec for lung fibrosis and did not get a "statistically significant" result but the doctors. at HSS say that is because they did not test it on sclero people and they (HSS) are seeing the PFTs either stay the same; slightly improve; or improve quite a bit (unusual but true).

 

During the gap period, I have also taken Colchizine which is a gout medicine. Pretty much every rheumatologist doctor will tell you it does not work but the lung transplant doctor told me that he gives the drug to people waiting for the lung transplant and sometimes it works for their fibrosis and sometimes it doesn't. He has no idea why or on who it works. But it is a great drug as you don't even know you are taking it. Personally, if I were you, I would not take it as it seems like your disease is very active but for me, I like it as it made me feel like I was doing something during my gap period.

 

Best of luck with everyting. REgards, Gidget

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Birdman.

I have been on Azathoprine maxium dose of 200mg for nearly 2 years. I have had not side effects at all. Unfortunately, it has not helped enough and I cannot get down lower than 10 of Prednisone. At that level I have had increased inflammation and intense joint pain. So, now I am back up to 40 mg of Prednisone and now my doctors are discussing whether to put me on Cytoxan or to try Enbrel next. I need to wait until after my thyroidectomy (quite by accident I found I have thyroid cancer) to try the new drug.

 

It just might be the right drug for you. Just be sure they do check your liver enzymes +/- every 6 weeks.

 

I wish you good luck!

Cheryle

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I'm glad to see your post, updating us on how you are doing, Birdman.

 

However, I am sorry to read that you have worsening lung function.

I do hope the stem cell transplant happens for you, but in the meantime,

I'll keep good thoughts for you!

 

Please keep us posted, if possible?


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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