Using Enbrel, Humira, and other immunosuppressants

Good morning everyone,

I'm not one for usually contributing to this particular category of discussions, as I don't take any kind of treatments for my alopecia anymore, but as I've been watching TV I've had a question that I just had to ask -- and I really do wish we had some doctors on AW so we could get the benefit of their expertise for some of these questions!!

A lot of the immunosuppressant drugs out there, such as Humira and Enbrel, are proven remedies for treating rheumatoid arthritis and psoriasis, which are also autoimmune disorders. I'm just curious as to whether or not anyone has researched these drugs' effectiveness in treating alopecia, and if so, what was the success and failure rate? It never ceases to amaze me that nobody thinks to treat an autoimmune disorder with immunosuppressants; rather, the traditional protocol of steroids and inflammatories (which almost always yields little to no results) seems to be the status quo. I would subject myself to treatments again if I knew for certain that there was some research and success with something like these medications out there that REALLY work.

Any insight on this subject would be greatly appreciated.

Views: 4404

▶ Reply to This

Replies to This Discussion

Permalink Reply by j.g.anderson on February 19, 2015 at 5:04pm

Lucia - Did your hair come back?  This happened to me after less than 6 months on Humira.  

Permalink Reply by Suzi on January 29, 2010 at 11:37am
I think it works but you need to take them all the time, because if you stop hair will fall again. My mother was using some similar immunosuppressant drogs for AA, she experience hair growth, but her face was swollen and she start to gain weight...so she stops using them very soon.
If you want your hair back with this kind of treatment you need to pay the price - witch is your health.
Permalink Reply by Ann Gee on December 22, 2010 at 2:58pm

I have been on immunosuppressants for 2 years for rheumatoid athritis.  I developed Alopecia Aereta about a year ago- within 6 months I had Alopecia Universalis.  I had been wondering whether the immunosuppresant (Enbrel) had actually triggered the Alopecia even though this does not seem to logically make sense. 

 

 

 

 

Permalink Reply by Ann Gee on December 30, 2010 at 11:38am
Hi Whitney,
Yes I have read some articles about people developing Alopecia aftrer taking the drugs. I am not convinced from the studies that I read as to whether the Alopecia was triggered by the TNF blockers or whether since the subject was already in treatment for an immune related disease, that the Alopecia was anther development in the immune issues already present. I developed AE years ago when I was not on any TNF blockers. That instance resolved itself although I had added sulphasalazine to my RA drugs. The last episode did not. Both episodes followed flu shot injections.
Permalink Reply by j.g.anderson on February 19, 2015 at 5:03pm

Ann-  Did your hair come back?  This happened to me after less than 6 months on Humira.  

Permalink Reply by Maryann on December 30, 2010 at 1:16am
I am interested in the comments to this post....reading now...but since it looks like my info falls similar with a drug reaction auto-immune i thought i would post here too:

Lost my hair after taking fertility drugs (Clomid & Femara)

thanks!!!
Permalink Reply by Karen Smith on December 31, 2010 at 11:28am
I am a nurse and did alot of research with risk versus benefits before making the decision to put my daughter on sulfasalazine. It seemed less risky than the methyl. and steroid combination that the dermatologist originally suggested. You have to be on 3gms a day for 4 months before you will see growth. You have to be followed with bloodwork but many people tolerate it quite well. She is experiencing hairgrowth. The problem we had is that she developed a rash over thanksgiving. Noone was sure what caused it but we took her off of the drug to be safe. It was most likely a virus and not related. Her hair is still coming in and the derm that I just took her to said that it may have been enough to jump start the regrowth. She wears a wig and is happily going on with her life but would love to have her hair back if possible. I think accepting the condition does not mean giving up on finding a cure!! These autoimmune diseases cluster so we have to look for cures. She has since developed a vitamin b-12 deficiency which is autoimmune also.
Permalink Reply by Ann Gee on December 31, 2010 at 1:11pm
I did not have any side effects from the sulfasalazine. I was taken off of it because it was not working for my RA anymore - but I think I will talk to my doctor about the possibility of taking it again for my AU. Not sure whether there might be an issue with the combination of Enbrel and the sulfasalazine. Happy to hear that her hair is coming in. Thank you for your input! Happy New Year!
Permalink Reply by Connie - Chris' Mom on January 8, 2011 at 10:56pm
My son has been on a large dose of immunosuppressants (200mg Azathioprine) for a year and a half due to ulcerative colitis (which was discovered after he lost most of his hair). He was AU for almost a year and is now experiencing re-growth, although it keeps moving around. At first the sides started to come in, but nothing on top. Then the sides started falling out again and began growing on top. Through this he has mostly re-grown his eyebrows and eyelashes and even has splotchy hair on his legs.

Because of a recent flare-up (and his inability to tolerate the other medications, and the doctors reluctance to have him on high doses of steroids again) he has now started Remicade infusions, a TNF treatment that requires a 2-3 hour IV infusion. We're watching to see if it has any effect on his hair, but it's definitely not something you would get an insurance company to pay for, for alopecia. We had to fight to get them to pay for his and the hospital told us it runs about $20,000 per infusion (he needs 8 this year). I also wouldn't risk the side effects to simply re-grow hair, one's health is much more important. There does however seem to be some interest in the world of research to see if there is an answer somewhere in the treatment of other autoimmune diseases, as I recently registered him in the Alopecia Areata Registry, giving his medical and family history, and we were immediately contacted to see if he was willing to take part in the Second Tier Registration where they take blood samples and have an in-depth form filled out by us and his dermatologist. We will, of course, be participating, as I can only pray that something good will come out of everything he's been going through.
Permalink Reply by Carmen Willey on February 4, 2011 at 12:51pm
Doctor is thinking about putting me on Soriatane for scarring alopecia (lichen kind). Has anybody heard of this or on it???
Permalink Reply by Karen Smith on February 5, 2011 at 9:03am
Enbrel is extremely expensive and my daughter-in-law had to fail other drugs for her RA before they would give her this drug. My daughter has used sulfasalazine and is having regrowth. She had to stop it at thanksgiving due to a rash and is still growing hair.
Permalink Reply by Phyllis Tankel on February 5, 2011 at 8:34pm
how long did your daughter in law have alopecia before she went on the sulfasalazine?

RSS

Disclaimer

Any mention of products and services on Alopecia World is for informational purposes only; it does not imply a recommendation or endorsement by Alopecia World. Nor should any statement or representation on this site be construed as professional, medical or expert advice, or as pre-screened or endorsed by Alopecia World. Alopecia World is not responsible or liable for any of the views, opinions or conduct, online or offline, of any user or member of Alopecia World.

© 2024   Created by Alopecia World.   Powered by

Badges  |  Report an Issue  |  Terms of Service