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Starting pulse Prednisone-Methotrexate

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

  1. Joann

    Joann Moderator

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    Hi Starshine,

    I'm very glad to hear that you are not experiencing the unpleasant side effects that can accompany these meds. I'm glad too that your derm is monitoring your liver function.

    I absolutely believe that for many, many Alopecia Areata sufferers the condition can correct itself . It's true that's it's harder to have reversal with AT or Alopecia Universalis especially if someone has been that way for a long period of time. However interestingly enough I'm now seeing regrowth of my eyebrows after about 8 or more years of them being totally gone. They are growing in dark though when my eyelashes started growing back they started out white and then darkened. I'll try and get a picture up. Regrowth can come in white then darken or come in as your own colour.

    You are actually the first person I know of anyone doing the prednisone - methotrexate together. I do know those who have done the prednisone on it's own or the cyclosporine, another immune supressing med, on it's own. I have a friend in Indiana who is Alopecia Universalis and has lupus. She has been on methotrexate and then prednisone for the lupus . They didn't want her on methotrexate indefinitely because of the liver issues so I believe she's just on Prednisone and Plaquenil now. She has not seen any return of her hair but we are all different.

    I have another friend in Ohio who feels she would have gone to AT if not for doing the Prednisone pulse. Her loss became quite severe after her pregnancy with her daughter requiring her to wear a wig for awhile in 2005. She did have regrowth and ditched the wig. She still gets bouts of loss but manages to maintain her own hair with cortisone injections for the time being.

    I feel there are a lot of factors that come in to play for each individual case of Alopecia Areata. Genetics definitely plays a part. Dr. Christiano from the NAAF research team using information gained from the Alopecia Areata registry looked at patients with different severities of Alopecia Areata. Those who had 13-14 genes had disease that did not progress while those with 16 or more often progressed to Alopecia Universalis. It would comforting to be able to know that one's case of Alopecia Areata would not become severe but on the other hand knowing from the first patch that you were going to lose it all would take the hope away that we all have when first diagnosed.

    I do hope that continuing with the meds for awhile longer will somehow tip your immune system into remission but no matter what happens you will always have the peace of mind knowing that you gave it your best shot.

    Good Luck!

    Joann
     
    #21 Joann, Jan 11, 2013
    Last edited: Jan 11, 2013
  2. dancer

    dancer Experienced Member

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    Good news about the eyebrows Joann :)
    Hope this good start to the New Year continues for both of you
     
  3. starshine

    starshine Guest

    Thanks Joann and Dancer. I am so glad to hear you are getting eyebrow regrowth. That is a great start for the new year. I will let you know my progress, if any, in a few weeks.

    - - - Updated - - -

    Joann, I would love to see pictures of your brow regrowth if you get a chance.
     
  4. Joann

    Joann Moderator

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    Thanks dancer and starshine. :) Time will tell as to what happens with these brow hairs. I really never expected to see hair in that area again. There hasn't been a single one appear in all these years without. It's quite a surprise. I will get the picture up first chance I get. I need my son's help to take one and upload it.
     
  5. Lost

    Lost Guest

    YAY!!!!! on the eyebrows Joann...starshine I hope your hair keeps on growing...good-luck. D.
     
  6. Joann

    Joann Moderator

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    Thanks D :)
     
  7. starshine

    starshine Guest

    I wanted to give an update on my progress with Prednisone/Methotrexate. I saw the dermatologist today who was quite pleased with my progress. I am now only on Methotrexate and have had a lot of new white regrowth on the top and sides of my head. I definitely notice my hair feels thicker and I have no shedding. There are no bald areas now, except for the nape area. My hair is still very thin, but I can actually brush it now and even style it a little which I could not do before as it was so thin. She is concerned that the nape area has not had any significant regrowth and suggested applying Squaric acid just to that area.


    Joann, if you happen to read this, I would appreciate your thoughts as I know your experience with this treatment was not good. I believe that she would only apply it to the difficult nape area, not the whole scalp.

    I will be continuing with the Methotrexate, 20 mgs. a week for at least the next four months along with injections in the thin areas. My eyebrows are also being difficult. I have gotten some very light colored eyebrown hair, but it is not significant. My dermatologist gave me a trial of Latisse to see if that might help, along with the injections. I am getting more and more light colored leg hair and some very light colored body hair in other areas.

    I still have a long way to go, but my dermatologist feels that without this treatment, I would have progressed to AT/Alopecia Universalis. She is hopeful that I will be able to go without a wig this summer if my progress continues. Overall, I am really glad that I tried this treatment. I know there can always be a relapse, but it has given me a sense of hope and allowed me to relax a little which is a good thing with this condition.
     
  8. dancer

    dancer Experienced Member

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    Starshine I was pleased to read your positive news....may it continue :)
     
  9. starshine

    starshine Guest

    Thanks Dancer. I don't know what tthe future will bring, but for now I am feeling hopeful. As you well know, this condition is so unpredictable, but even the smallest sign of growth is a victory against Alopecia Areata.
     
  10. Joann

    Joann Moderator

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    Hi starshine,

    Sorry to be a little late replying to your update. Thanks again for sharing your progress on the treatment with us. It's much appreciated. I'm happy to hear that so far you are seeing improvement on it. The nape area can be resistant to treatment.

    Can you tell me how large an area it is that she wants to treat with squaric acid? It's not a pleasant treatment and the discomfort you would go through is relative to how large an area is treated and what strength you react to.

    The process would go something like this: Your derm would do a test patch first on your arm or scalp at 2% strength then have you go back in a couple weeks to treat the area with a very diluted strength. You would go in weekly to have the dose adjusted until you react. Then you keep going in until if and when hair starts to grow. The treatment is stopped when hair is well on the way to regrowing. There is a possibility that the hair will fall out again when the treatment is stopped. In those instances treatment has to be restarted.

    From what I have read the success rate for squaric acid is 43%. Factors such as how much hair has been lost before, duration of the Alopecia Areata before starting treatment and nail abnormalities are indicators of a poorer outcome with the sensitizing treatments.

    Side effects include:
    severe itching
    abnormal enlargement of the lymph nodes
    redness of the skin
    vitiligo

    Again I would stress that the size of the area being treated would probably factor in to how well you would tolerate the treatment. Good luck with whatever you decide to you and please do keep in touch.

    Hugs,
    Joann

    P.S. I promised pictures of my eyebrow regrowth awhile ago now. I have them uploaded to my computer now and will share them in a new messagethread later on tonight or tomorrow at the latest.
     
  11. starshine

    starshine Guest

    Thanks for letting me know what to expect Joann. The area is not too large, it is basically the lower left side of the nape about the size of a quarter. It is not even totally bald, there are a few thin scraggly hairs here and there, but the area just won't fill in and the surrounding nape areas, although not smooth bald, are also very, very thin and resistent to treatment so far. Have you heard of this treatment being used just on certain areas versus the whole scalp? She is also going to do this while I am still on the Methotrexate and I don't know if that will have any bearing on the outcome.

    On a more positive note, I can't wait to see your eyebrow regrowth pictures!
     
  12. Joann

    Joann Moderator

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    Hi starshine,

    This treatment can be done when someone is AT or Alopecia Universalis but it is not generally sucessful in those instances. It works better for those who are only Alopecia Areata and have areas that are too large to treat with cortisone injections. I'm assuming that your derm has already tried the injections in the area
    with unsatisfactory results? Otherwise personally I would go that route first.

    Joann
     
  13. starshine

    starshine Guest

    Here is an update on my Pred/Methotrexate treatment. I have now been on Methotrexate for about 7 months (with Prednisone for the first two months). My derm is pleased with the results and I do think my hair has noticably filled in especially on the top. You cannot see any scalp on the top which you definitely could prior to this treatment. The nape area is still being very resistant however, and even with injections, does not seem to respond. I am beginning to wonder if it will ever fill in. Also the left side of my hair is noticably more thin on the right side than the left, so it is impossible to cover the bare area in the back on that side and looks totally lopsided. Those areas do not seem to be responding to any treatment. My derm wants to continue with the Methotrexate for at least a year as long as the blood work stays normal, but I have to say that I am feeling a little down.

    I am concerned that my eyebrows have also not responded wel even with latisse,l and the rest of my body hair has thinned dramatically. I have virtually no underarm hair and diffuse leg and arm hair, although there is some. I wonder if the body hair is a bad indication of things to come even though I have regrowth of scalp hair. This is such a strang and confusing condition.


    I don't think I mentioned that at the start of my hairloss, I was also found to be severely anemic and Vitamin D deficient. I have since been on serious iron supplements and Vit. D. supplements and have significanlty raised my iron/ferritin level which may also be helping with my hair. I did have a biopsy which confirmed Alopecia Areata, so I know that is the cause of my hair loss and not the anemia, but my derm feels it may have been a trigger for the Alopecia Areata.

    Anyway, I will update again when I see the dermatologist in 2 weeks to see what she says.
     
  14. dancer

    dancer Experienced Member

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    hi starshine, It is good you are seeing some results but frustrating that other areas are not responding as well, hopefully in time it will improve, as you say it is a very frustrating condition. Thanks for the update, I cant believe it is seven months since you started the treatment. Keep positive I think it takes a long time for the body to find it equilibrium :) Sara x
     
  15. starshine

    starshine Guest

    Thanks Dancer for the encouraging words. I do think I have to be more patient and stop stressing, as ultimately I think this thing is going to do what it will, no matter what. My derm did suggest trying Squaric acid on the difficult areas, but at this point, and I know you can relate, I am just plain gettng tired of it all and just want to live a somewhat normal life again with or without hair.
     
  16. Joann

    Joann Moderator

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    Hi starshine,

    Again thanks so much for keeping us updated on your treatment. I didn't realize it has been 7 months. Time really does fly!

    I'm glad that you are seeing some results with the treatment but understand that how disappointing it is not to see results in the nape of the neck and eyebrows. The nape can be quite stubborn to treat effectively but that being said I have seen Alopecians who did eventually get regrowth there.

    I think that seeing the loss of body hair does not necessary mean worse case scenario but it does indicate to me that the Alopecia Areata is not in complete spontaneous remission. That's not to say it won't happen. It's just where you are at now.

    You could have cortisone injections in your eyebrows which could promote some regrowth . I went that route myself when losing my brows. They did grow back but unfortunately started to fall out again when I discontinued the injections. Another downside is that I got some denting which took awhile to fill in.

    Now the darn things are growing in on their own. It does seem like Alopecia Areata has a mind of it's own to do what it will. Hard to accept that.

    Having anemia or Vit D deficiency is not good for your general health or your hair but I agree with your derm that it was probably more a trigger for the Alopecia Areata than the cause because then the hairloss would have corrected itself once you were at the proper levels for them.

    Your derm is doing everything in her power to help you with the Alopecia Areata. I feel there will be a time when you will have to make a decision about continuing the treatment. Personally I would be leery of doing it too long term especially if it's not yielding the expected results. This is a med I would definitely take if it was a life or death situation. It is not something that should be taken long term for hairloss as it comes with no guarantees that the regrown hair will remain and there is a definite health risk the longer it's taken.

    I hope my honesty is not offensive to you. It really comes with only the best of intentions.

    Gook Luck with whatever decisions you make. I hope things turn around for you with your Alopecia Areata.

    Hugs,
    Joann
     
  17. dancer

    dancer Experienced Member

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    Yes starshine I can totally relate to wanting to get back to a normal life, I was only 14 and had endured two years of painful treatments during school hours when I finally made the decided to stop. I was so comfortable with my decision I have never looked back and regretted it, but then I was in a slightly different position that I had no regrowth. I really think you will know when the time is right. I totally agree with Joann regrowth can happen at any time, this condition has a mind of it own for sure
     
  18. starshine

    starshine Guest

    Thanks so much Dancer and Joann. Joann, I totally appreciate your honesty, you put in words what I have been thinking. I love my dermatologist, but I think she is so focused on the positive results with the Methotrexate, that she is not looking at the whole picture and I am concerned about being on Methotrexate for so long even though the blood work has been fine so far. It is confusing, as I seem to have some good indicators and some not so good. That said, I have two questions, Joann, if you don't mind.

    One, with regard to the body hair, do you always regain most of your body hair once the Alopecia Areata is in remission? I have not actually noticed any additional loss of body hair since starting this treatment, but what I lost, does not seem to be growing back, or very, very slowly. What I do have though is really growing. I have patches of leg hair that are really long and since hair is now sacred to me, I have thrown out my razor (much to my husband's horror).


    Second, are nails any indication of the status of this condition? When this first began, all of my nails were lightly pitted. Now, they are all clear with the exception of one nail which still has a very small pitted area. What I have read on nails is very conflicting.


    Thanks so much Joann for your always helpful and honest advice. I am going to have to make some difficult decisions soon and I want to be as informed as possible. Also, I am sooo happy for you about the eyebrow regrowth after all this time! It just proves that there is always hope.
     
  19. Joann

    Joann Moderator

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    Hi starshine,

    I'm glad that you were not offended my honesty. I honestly feel that where is Alopecia Areata is concerned there is more room to have hope than to despair. I base that feeling not only on my own personal experience with it but also all the positive stories I have heard in the various support groups I've been in these past 9 yrs.

    Every case of Alopecia Areata is different so I can't give give you rock solid answers for your questions. My leg and arm hair has been pretty sparse through the years even when the Alopecia Areata wasn't active so in my case no all the body hair didn't return. Another strange thing with me is that I had never really lost my brows or lashes before. That happened when I was around 52 and already bald .

    The condition of the nails can help when the hairloss diagnosis is not clear cut and may also be an indicator of a poorer outcome. However again in my personal experience with Alopecia Areata I had most of the poorer prognosis indicators and yet regrowth and a long remission period from my 20's to 40's.

    I know this doesn't really give you an answer as to your own outcome. There's just no way of knowing that with absolute certainty.

    Keep us updated. Good Luck with growing hair!!!

    Hugs,
    Joann
     
  20. starshine

    starshine Guest

    Good news at derm appointment this week. There is finally some hair growing in the nape area, some of it is even dark, unlike all the other new hair which has all been white. Also, even though I thought I did not have any leg hair, my dermatologist showed me that if I look carefully in the light, there is actually a lot of very fine white hair all over, you just cannot see it without bright light. It does not seem like real hair to me, but I guess it is something. My dermatogist agreed that this is a very difficult condition to figure out and some people get scalp hair, but do not get all of their body hair back or the other way around. That is fine with me as long as the scalp hair returns. I guess time will tell. My derm said that the scalp hair, however, was strong and growing well. Since there is new regrowth, we are going to continue with the Methotrexate for a while longer as long as the blood work continues to be okay. Once we do decide to stop the Methotrexate, it will be a very slow taper.
     

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