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Starting pulse Prednisone-Methotrexate

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

  1. starshine

    starshine Guest

    After a year of ophiasis-diffuse Alopecia Areata, I have decided to try a Prednisone pulse and Methotrexate treatment. I have about 50 percent hair loss now and what is left is very, very thin. I lost both eyebrows, but did get some brows back with injections. Body hair is also getting sparse. I am posting my regimen for anyone who might be interested in this treatment. I am well aware it is not a cure, but am hoping to calm dowm my immune system if nothing else. These are serious drugs and I recently found out I have osteoporosis, and I really had to fight to get my derm to prescribe it. I am starting on Prednisone at 50mg for 7 days, then tapering to 40, 30, 20, and then 10, all for 7 days. At the same time, I am taking Methotrexate at 20mgs. Once a week with folate every day. I have to take Calcium and vit D and Fosamax for the ostoporosis and get blood work done for liver evaluations. I can continue on the Methotrexate for a long time once I have to stop the Prednisone and can continue with scalp injections if I want to help maintain any growth. I have done 1 week so far and have had no side effects, not even insomnia and have lost 5 pounds, although I was always very thin. It is too early to see results, but will update if anyone is interested. Everyone is different in the way they react to any Alopecia Areata treatment, but I tried to find out as much as I could before deciding to try this so I had some idea of what to expect. I know many people feel that jeopardizing your health is not worth it and I totally respect that, but I am just not ready yet to raise the white flag.
     
  2. Joann

    Joann Moderator

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    Hi starshine,

    Thanks so much for sharing this whole treatment process with us. It's very much appreciated as it will help others who will join and be looking for information on this type of treatment for Alopecia Areata. I think you are doing everything possible to protect yourself from the possible known side effects. I'm glad to hear that so far no side effects. You are doing a slowing tapering off the Prednisone within a week so hopefully you will have no side effects for this part of the treatment. You're also on a fairly low dose of Methotrexate so hopefully no side effects from that either. Do you know how long you might be on that?

    I understand totally & respect that we are all different in the decisions we make for treating our Alopecia Areata. My premise has always been to be your own advocate and have all the information possible on any treatment being considered. I also advocate to start with the safer ones first which you have done. After that the choice is entirely up to each individual and no one else. I myself pursed and did treatments for every bout of Alopecia Areata I experienced. The difference was that I went at them blindly.

    You will be easier in your mind knowing that you did everything you possibly could to treat the Alopecia Areata. If you had not gone ahead you may have had regrets if you decided not to treat and your outcome was severe loss.

    I will be following your progress and again thanks for sharing with us.

    Hugs,
    Joann
     
  3. starshine

    starshine Guest

    Thanks so much for your support Joann. My derm said we will evaluate the treatment in a month and decide if I can do another pulse of Prednisone or just continue with the Methotrexate. Normally, the Prednisone taper starts a little higher, at 60mg a day and repeats for 3 months, but my osteoporosis is severe, so I dont think she will let me do more Prednisone. I think I can stay on the Methotrexate for at least 6 months, with monitoring. I will keep updating.
     
  4. dancer

    dancer Experienced Member

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    Starshine I am pleased you have not had anyside effects so far. I think it is really helpful of you to post your experiences for others who are making a decision whether or not to have this treatment.

    I truely hope this works for you,
    Best wishes
    Sara x
     
  5. starshine

    starshine Guest

    Thank you,Dancer. I am trying not to expect too much so I won't be disappointed, but I felt this was something I wanted to try, with careful monitoring, whatever the outcome.
     
  6. Joann

    Joann Moderator

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    Hi starshine,

    Just checking to see how you are doing now. Hope you're still tolerating the treatment well.

    Hugs,
    Joann
     
  7. starshine

    starshine Guest

    Thanks so much for checking up on me Joann. I am having no problems or side effects from the medication however, I am not seeing a lot of improvement in my hair except for some tiny new regrowth in the very front and it does not come out much at all now, which I guess is a good thing. It has been 3 weeks since I started, so it may still be too early to tell anything. My next derm appointment is in 3weeks and I will update then.
     
  8. dancer

    dancer Experienced Member

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    It all sounds like quite a good start, hope things improve even more over the next few weeks:)
     
  9. starshine

    starshine Guest

    Thanks Dancer. It is amazing how you can lose your hair in an instant, but it takes forever to regrow.
     
  10. starshine

    starshine Guest

    I just came from the dermatologist and wanted to give an update on the Prednisone/Methotrexate treatment. It has been 6 weeks now and I have not seen any significant regrowth, but my dermatologist said that it often takes longer for the meds to kick in and wants to do another month of Prednisone pulse and continue on the Methotrexate. I am getting discouraged, even though I knew this was a long shot, but I will continue since I have not had any bad side effects. Drinking a lot of fluids, eating fresh fruit and vegetables and really watching carbs has helped a great deal with eliminating some of the nasty side effects, includng weght gain, from the Prednisone.
     
  11. Joann

    Joann Moderator

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    Hi Starshine,

    Thanks for the update. You said you aren't seeing significant regrowth yet but as your doctor says it may be just a matter of time. The good news is that you are not having real troublesome side effects. How about the hair shed? Has the treatment slowed that down?

    Good Luck with the second month of Prednisone pulse.

    Hugs,
    Joann
     
  12. dancer

    dancer Experienced Member

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    Sorry you are feeling discouraged I hope that the next few weeks makes the difference, maybe it is early days yet I honestly dont know much about this treatment. I remember I just couldnt stop myself checking every day when I was having treatments for any sign of regrowth in my teens and feeling very disapointed and frustrated that nothing was happening, it can be a very trying time but hang in there you never know:) I still have times when I continuously look for any signs of regrowth and then I go months and dont look at all, weird how even after all these years I still do this! It is really good you are still not having any bad side effects. Thanks for keeping us updated.

    Keeping my fingers crossed for you xx
     
  13. Emme70

    Emme70 Guest

    I'm curious about this treatment and what benefit Methotrexate has. I'm currently on Methotrexate and Prednisone for Rheumatoid Arthritis and one of the know side effects of MTX is hair loss. It's that side effect that has brought me back to this site. What benefit did your dermatologist say MTX would have on hair loss?
     
  14. starshine

    starshine Guest

    Thanks for the encouraging words, Joann and Dancer. Dancer, you are right, I am constantly looking in the mirror which is not helping any. I am going to try to not to obsess over this from now on. Dancer, have you ever had any regrowth? Emme, It is confusing because Methotrexate can cause hair loss, but I think (I am no expert) when it is prescribed for auto immune alopecia, it is a little different as it is used to suppress the immune system to stop the attack on the hair follicles which allows hair to grow.
     
  15. dancer

    dancer Experienced Member

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    Yes only twice, once in my teens and at 21 when I was pregnant. In Feb it will be 37 years, most of that time I have being Alopecia Universalis, sometimes it doesnt seem that long, sometimes it feels like a life sentance, I think it depends what other things are going on in my life to how much it frustrates me!

    I use to tell myself not to look in the mirror but I am afraid curisoity always got the better of me! Its hard not to obsess, but I think its what we all do when we want something so badly

    Sara x
     
  16. starshine

    starshine Guest

    Okay, so here is an update of my treatment with Prednisone/Methotrexate if anyone is interested. I went to the derm today after two months on Prednisone and Methotrexate. I just started to notice new hair growth on my legs, private areas and eyebrows, as well as very fine, white new growth on my scalp at about 8 weeks (nothing before that). My derm said there was definitely new growth and that it was most likely due to the Methotrexate which starts to kick in at about 8 weeks. She was very excited and said that she was taking me off the Prednisone for now, and just continuing with the Methotrexate. She also did some scalp and eyebrow injections. I am to return in 7 weeks. Overall, I think the treatment is working. It took a long time to kick in and I really had my doubts, but although my hair still looks like total crap, the new growth is encouraging. My derm said she really feels the condition is reversing. I am still very skeptical, and not at all sure what will happen when all meds are stopped, but for now, I am going to be positive and hope for the best. For anyone contemplating this treatment, make sure you drink a LOT of water and eat very healthy food while on these medications. I will update on my next derm visit in 7 weeks.
     
  17. Joann

    Joann Moderator

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    Thanks for your update starshine. I really appreciate your sharing it with us. I agree that the new growth is encouraging. :) I do hope that it continues even after all meds are stopped. What if any side effects are you having? I know that everyones' experience is different but it does help to hear what one may possibly experience while on the meds.

    Joann
     
  18. starshine

    starshine Guest

    Hi Joann: I really have not had any side effects from either the Prednisone or Methotrexate except that I did notice that I bruise easily and cuts or scrapes take a long time to heal. The normal side effects for Prednisone are weight gain, puffy moon face and sleeplessness, none of which I had. Methotrexate can make you tired or nauseated, but again, I did not encounter this at all. My derm did tell me to really drink fluids, especially water and eat foods high in potassium like Bannanas and very little/no carbs, junk food or alcohol. I am still getting monthly blood work for my liver as Methotrexate can cause damage to the liver and should be monitored closely.

    Joann, do you think this can eventually reverse? I know there is no way to know for sure, I just wondered if you knew anyone who did this sort of treatment and the hair actually stayed. I will be on Methotrexate for at least 2-4 more months, but I am really scared to get my hopes up. I have noticed that my nails, which were pitted before are now almost clear and even my eyebrows have started coming back although they are really light in color. Also, is it normal for body hair, legs and underarms to come in white? Mine is so white, it is almost hard to see, but it is there.
     
  19. dancer

    dancer Experienced Member

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    Hi Starshine
    It all sounds promising :) Just to comment, any sort of regrowth I ever had had, body or head was white, almost transparent, except once my scalp hair came back jet black!

    Keeping my fingers crossed for you x
     
  20. starshine

    starshine Guest

    Hi Dancer. Thanks again for your suppport. It really means a lot. Yeah, most of my regrowth so far is transparent/white. That is really strange that yours came in black once, but nothing should be surprising with this condition I guess. I know scalp hair is usually white, but I wasn't sure about body hair. I don't really care if its purple, as long as its there and continues to grow!
     

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