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#1 Perky Patsy

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Posted 26 July 2009 - 12:08 PM

Would like to know if anyone is taking leflunomide and what their experience is with it. I was recently prescribed this medicine but because of the serious side effects and the possibility of getting swine flu I am afraid to take it.

Would appreciate hearing if the risks of Leflunomide are worse than the scleroderma and sjogren's that I am being treated for. Thank you.

#2 janey


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Posted 26 July 2009 - 01:35 PM

Perky Pasty,
Welcome to the ISN forums! Sorry to read that you are having to deal with both scleroderma and sjogren's. One is enough - don't you think? Unfortunately, it seems pretty common to have to another autoimmune disease along with scleroderma.

Please know that I am no doctor and can only provide information that I read from reputable sites. I'm not familiar with leflunomide and the only mention of it on ISN is in conjunction with methotrexate. The first article in our section on combination therapies discusses the results of a study that used MTX and leflunomide.

The patient information on leflunomide from the American College of Rheumatology seems to indicate that it is an anti-inflammatory used primarily for rheumatoid arthritis. I found no mention of it being used for scleroderma. After reading its risks, it appears to actually have fewer or similar risks of other DMARDs which include immunosuppressants. Anything that suppresses the immune opens us up to infection, but they can also prevent our diseases from causing additional damage or at least slow the damage to a manageable rate. I have been on at least 4 different immunosuppressants during the past 6 years (only one at a time) and with one exception, I have managed not to get some of these contagious diseases such as the flu and even colds. It's important to wash your hands every time you come home from anywhere and if you notice someone around you that is sick - then leave. My friends and family are very respectful of my situation and won't let me come near them if they are sick.

Taking any drug can be un-nerving, that is why it is so important to know how you feel at all times and see a doctor if you suspect that you have gotten sick. Even with a cold, we need extra help to get better. So please talk to your doctor about your concerns. Some times the rate at which your disease is progressing determines the treatment. Please tell us more about yourself and let us know what you decide.

Big Hugs,
Janey Willis
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International Scleroderma Network (ISN)

#3 Perky Patsy

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Posted 27 July 2009 - 07:23 AM

Dear Janey,

Thank you for your reply! As you requested, I will let you know a little about myself. I am 69 years. old and was diagnosed about 3 years. ago with Crest. Although have had the symptoms approx. 15 years, with Raynauds, pain, and dry mouth and eyes and also I had a bout with double vision for around 3 mos. My mouth was so dry that I couldn't talk at times. I have trouble swallowing and easily choked. Have lost 40 lbs. My primary care doctor., just did not pay attn. to my symptoms. Finally I was referred to a rhemy and after doing alot of tests said that I have Crest and Sjorgren's. He from time to time gave me Medrol, which when I would take it would get shingles, and thrush. So, then he put colchicine for inflammation. I have had some heart trouble--SVT's and my heart beating out of rhythm which I was hospitalized. So, I take Coreg for that and was also prescribed Norvasc for the Raynaud's. However it seems to drop my BP too low so that causes a problem. My lungs have been affected and I have nodules and interstitual lung disease, which my pulmonoligist said a mo. ago that my compacity has improved, but the way my lungs assimilated the gases has regressed. I was just at my rheumatologist's and he then gave the script for the Leflunomide. My fingers and the joints are getting larger and sore. So, I figured he must think it is getting worse. It was nice to know your experience with the immunosuppressants. Thank you so much! If you have any suggestions please let me know! Perky Patsy

#4 Amanda Thorpe

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Posted 27 July 2009 - 09:14 AM

Hello Perky Patsy

I have not come across the drug you mention, I only have experience of mycophenolate and methotrexate, the former I took for about a year then switched to the latter due to tolerence issues.

All drugs have side effects you have to decide which is worse the disease or side effects, for me it was the disease diffuse systemic sclerosis. So far I have not had any major issues with the methotrexate and actually have days where I feel better than I have done in a long time. Oddly enough I have only had one brief bout of the flu the whole time my immune system's been suppressed and I've not had any other infections either.

I am not medically trained but thought that immunsuppressants were the popular treatment for scleroderma, it being an autoimmune disease. Would if be worth speaking to the doctor about your concerns regarding the drug prescribed and any alternatives?

Take care and keep us informed.
Amanda Thorpe
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#5 Perky Patsy

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Posted 27 July 2009 - 02:19 PM

Dear Amanda,

Thank you for the information that you gave me on the immunosuppresants and your experience. I don't know why it is that I am so afraid of various medicines. I didn't used to be that way and would take anything the doctor would prescribe and perhaps it is now that so much info is available to the public. So, after reading all the side effects and the warnings it makes me very apprehinsive. So, I appreciate hearing of your experience with them. It makes me feel not as afraid.

I have limited scleroderma with Crest, and sjogren's. I was diagnosed about 3 years. ago, but probably have had it about 15 years. I have some lung involvement and Raynaud's and diffuculty with swallowing and sore mouth and dried out sinuses. My joints in my fingers are getting worse so I think the rhemy thought it was time to take something to suppress the immune system. I did not do too well with Medrol.

But thank you so much for your reply! Patsy

#6 Shelley Ensz

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Posted 28 July 2009 - 03:09 AM

Dear Perky Patsy,I just want to say hello and welcome to Sclero Forums, we are delighted to have you join us. I'm sorry you have scleroderma and Sjogren's. I hope your treatment plan goes well.
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#7 Perky Patsy

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Posted 28 July 2009 - 11:13 AM

Hello Shelley,

Thank you for your concern. I am a new member on this, but am enjoying and learning about this as I go. It is hard for me to believe that I have this health problem, scleroderma and Sjogren's, since I have always been healthy and even when I haven't felt well able to cope and keep going. I have had symptoms for about 15 years. and didn't know what was wrong. But now I feel myself slowing down and can't believe it is happening. So, it is a help to find out how others feel and their fight against it.

Thank you. Patsy