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New MS drug helping my GA

Posted , 6 users are following.

sarebear67
sarebear67

I started a new MS drug called Gilenya about a month ago and my GA is clearing up!

I've had GA for 30 years (I'm 47) and have tried everything, prescription, herbal, dietary changes, etc. to no avail. The only thing that cleared it up was during all three of my pregnancies. I was convinced it was a hormonal thing.

The last 2-3 years my GA has been it's worst ever with large outbreaks on my legs and feet, arms and hands, and some on my torso. I've learned to live with it but always dread summertime when shorts and bathing suits become the norm.

Well, now that I've started this new treatment for my MS, it's totally clear on my arms, almost clear from my torso and fading significantly on my legs and feet!! Now I'm convinced it's definitely an autoimmune disease.

Gilenya is interesting in the way it works because it sequesters the lymphocytes to the lymphoid tissue to keep it from attacking the myelin sheath. I believe it's helping to stop the attack to my skin too.

I had to share because this is amazing to me.

3 likes, 12 replies

12 Replies

  • FrenglishCarole
    FrenglishCarole sarebear67

    Posted

    This is amazing, so this Gilenya has been prescribed to you because you have also MS? 
    • sarebear67
      sarebear67 FrenglishCarole

      Posted

      Yes, I have MS. Gilenya is the newest of the MS drugs (5 yrs on the market). It has to be the reason for the GA improvement. I sure wish there could be more/better GA research! I realize it's a mild disease, not fatal or debilitating but it sure has caused me self esteem issues, especially in my younger years.
    • barb77337733
      barb77337733 sarebear67

      Posted

      I'm so happy for you that your MS drug is also helping your GA.  Please keep us posted occasionally on your progress.  My chiropractor told me that GA is an autoimmune disease but I doubt that any regular medical doctor would prescribe an MS drug to someone that does not have MS solely for the purpose of clearing GA.  If we could know for sure that GA is, in fact, an autoimmune disease, perhaps our doctors could prescribe a drug like yours that would help us too.
    • sarebear67
      sarebear67 barb77337733

      Posted

      I agree. I wish we could find a cure but it isn't researched as far as I know. My dermatologist just kept trying this and that. The medical field doesn't take it seriously.
  • cathygardengal
    cathygardengal sarebear67

    Posted

    Hello everyone, My doctor believes this auto immune also. She has me on mycophenolate, a kidney transplant anti rejection medication. The spots got flatter and oldest circles faded in first month. Areas on my stomach are large spots of flat pink and lots of dots that change to circles with raised edges that slowly get flatter. I've also done one ROM treatment. Nothing happened. Due for another next week. I don't get why an antibiotic trio can only be taken monthly with no results....why not take it weekly?

    I called Dr. Hamzavi's office in Michigan (The doctor that did the ROM study) The nurse said they use methotrexate when ROM doesn't work.

    Folks, Google methotrexate and you'll find studies about this drug and adalimumab for GA. I'm going to ask my doc about this and Gilenya.

    I can use halobetasol (strongest cream available) but it leaves stretch marks so doc said mix it with a little eucerin cream, as a topical. I'm also taking Chinese herbs in a tea for $60/week. It's not working either. I got at least 20 new dots last week. It's much worse than last year and my stress is much worse than last year. I'm 61 and have had this for 7 years.  Mine came at menopause.

    Thank you to everyone for sharing. It lifts my spirit every time I get an email from the forum!

    • sarebear67
      sarebear67 cathygardengal

      Posted

      The issue is also insurance approval. With Gilenya being a relatively new MS drug and very expensive, we had to jump through a few hoops even with a MS diagnosis.

      However, researcherd should study patients taking autoimmune drugs that have GA. I took Copaxone before for my MS and my GA never changed. Copaxone protects the myelon sheath. This new drug directly effects how the immune system behaves by sequestering the lymphocytes to lymphoid tissue. I find it very fascinating.

  • sarebear67
    sarebear67

    Posted

    With a bit of leg make up, I was able to wear a knee length dress to church this morning! I am so happy! You can still see the GA but it is very faint. I haven't worn a short dress or shorts for over a year!
    • cathygardengal
      cathygardengal sarebear67

      Posted

      Hi, are u still taking gilenya for ms and GA? Is it working still?

      Im still on methotrexate, halobetasol cream and three times a week UVB light treatments.  I'm on my 23rd light treatment with no change. Nothing is working and I won't be wearing capris this summer! My doctor said no to Actos which another gal mentioned due to side affects. I doubt he'll agree to this, either. The rash is popping up on my upper chest so I'm getting kenalog shots soon.

      So, how are you doing now? 

  • candice98838
    candice98838 sarebear67

    Posted

    I have been dealing with GA also for the past few years and have been told by my Rheumatologist that is autoimmune related I also have been taking the methotrexate and tried the creams in the past so far the methotrexate is not helping we just upped the dose a few weeks ago. I also have Raynauds, Lupus and rheumatoid arthritis. So to see others with this GA issue along with autoimmune issues I feel like may not actually be the only one with this freak issue that nobody can figure out. I go to university of Michigan hospital and they are even lost 😔
  • helen17414
    helen17414 sarebear67

    Posted

    Glad to hear this has worked for you,, I'm going through menopause (55) yr old woman, seems to have got worse now, I had one patch of GA about 15 years ago on my ankle, thought it was ringworm had it for 2.years then went away, been having UVB treatment for 6 weeks that did make it fade on legs , used touch steroid on bad bits inside arm, stopped uvb , returning again in same places, should be more research done on GA, also not looking forward to my summer holiday , but grateful it's not a danger to your health 
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