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Starting pulse Prednisone-Methotrexate

Discussion in 'Women's Alopecia Areata' started by starshine, Oct 30, 2012.

  1. sfnative

    sfnative Guest

    I am starting prednisone and methotrexate soon

    I have had alopecia universalis since 2003 on my 51st birthday - and during all these years I was under a certain health plan. When my hair first fell out I was sent to Vera Price at UCSF SF. Her only advice to me was "buy some rogaine". All these years, even though my eosinophils and platelets were high none of the doctors I saw treated my alopecia or my elevated eosinophils and platelets. This January, I changed to another health plan. They immediately gave me all sorts of blood tests/scans/mri/pet scan. They found that I have an autoimmune condition called Giant Cell Arteritis (my subclavian arteries are blocked). I have had this condition "for a while".......probably when my hair fell out and I became gravely ill back in 2003 – they also found numerous food allergies (which I have now stopped eating).

    When your hair falls out - doctors tend to look at it like a "skin" condition sending you to a dermatologist - when in reality (as I always knew) it was something inside my body happening. I knew it because my eosinophils and platelets were always high, but as I said my old doctors just never did anything about it. I had just thrown on my wig for years and lived my life and tried to stay as healthy as I could because the numerous doctors that I went to under that plan all said I was perfectly fine and that hair loss is not areally big deal (to them that is).

    So I am on the road to health to heal my arteries and my body and the bonus is that I could get my hair back too!!! My rheumatologist is starting me on prednisone soon and has mentioned methotrexate. I don’t really like to have to go on these medications (I have had a bone scan also before I start this treatment) but I have to cure the autoimmune condition.

  2. starshine

    starshine Guest

    Hi sfnative. It is amazing isn't it how some dermatologists just completely write off this condition without even doing any tests or anything. I often wonder how they would feel if their hair fell out one day, would they still think it was "just hair". Anyway, great news that they finally found something. Keep us posted as to any hair regrowth. The problem with Prednisone is that you cannot stay on it long-term which is why my derm switched to Methotrexate. Regardless, make sure you follow your doctor's directions and get regular blood tests as these are not drugs to be taken lightly.
  3. sfnative

    sfnative Guest

    Yes, I know about the awful prednisone and my rheumatologist is watching me very carefully! I wanted to mention about that alopecia areata "registry" they have out there. They sent me paperwork to fill out and my information would be put into the "system". I don't see the point of registering with them - they are not benefitting the person with the alopecia - it specifically says in their paperwork that it is not to find out what's wrong with you but it is to find out as a "group" who has what and what MAY be contributing to the alopecia. I went to see a top doctor at UCSF when my hair first started falling out and after waiting for months for an appointment, she waltzed into the room only to tell me to "go buy Rogaine". She is supposed to be one of the top doctors regarding alopecia and this was such an important and desperate appointment for me - only to tell me that. I was so dissappointed when I left I didn't seek help again for several years at a dermatologist near me and other internal medicine doctors. None of them did anything, nor did they take blood tests to see if there was any inflammation in my body (ESR levels, CRP, IGE, etc). All those levels point to inflammation in the body - and NOT ONE OF THEM took those tests. I would advise anybody reading this to get those tests done because that may be the root of your problem. All these years that I have researched causes of alopecia NOBODY ever mentioned these things! It was always "atopy" or "immune" disfunction - but immune disfunction can come up with elevated inflammatory markers. The biggest problem as we have discussed is that doctors only see hair loss - they are really not looking at something going on in the body - perhaps it is because insurance companies don't want extra testing that will open up a can of worms and thus cost lots more money for the sick patient.
  4. Joann

    Joann Moderator

    Mar 25, 2005
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    Welcome sfnative. I'm sorry to hear about the Alopecia Universalis & the other autoimmune condition "giant Cell Artertis" :grouphug:

    A lot of derms tend to be very dismissive when it comes to hairloss from Alopecia Areata. I can't really speak for them, but feel it may have something to do with the fact that oftentimes Alopecia Areata it corrects itself and in the cases of AT or Alopecia Universalis there is not much in the way of successful treatments. Patients have recovered from these more severe forms of Alopecia Areata but it has been a spontaneous remission which generally happens in a very short time frame. Most derms just test for ferriten and thyroid levels.

    I was fortunate to meet another women in my area whose husband worked as a biology chair in a hospital. Through her I was able to get the name of an immunologist and a referral from my doctor. I was already AT- Alopecia Universalis at the time. The immunologist pretty much told me there was nothing that could be done for my hair but she was willing to do a very thorough workup on me. When the results came back I had a positive ANA and indicators for Sjogrens Syndrome which is very similar to lupus. Classic symptoms are dry eyes and mouth but you can get joint pain, fatigue and organ involvement with it too. I see her on a yearly basis to monitor the Sjogrens.

    She told about the med Plaquenil. It's anti -malarial that is used to treat Sjogrens. I have a good friend who is Alopecia Universalis with lupus & Sjogrens. She was on Prednisone for many years because her lupus was severe at the time. She has gotten better and it's settled down somewhat so she is able to be on Plaquenil and Methotrexate at this time. None of the meds did anything for her hairloss . She has had to have 2 knee replacements from the bone loss she experienced being on Prednisone for so many years but would have died otherwise. When it's down to a decision like that you have to take the good with the bad .

    I'm just mentioning the plaquenil because it's not as heavy duty as Prednisone but I don't know a thing about your condition so maybe you don't have a choice.

    I would really recommend that you join the NAAF Patient Registry. The more who do the more samples they have. I would say that they are working harder at finding a cure in these past 3 years than ever before. They test not only Alopecia Areata patients but there family members as well to make comparisons. They are particularly interested in twins where one has Alopecia Areata and the other doesn't. I have posted some of the results on the forum:


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