User Tag List

Likes Likes:  11
Page 2 of 2 FirstFirst 12
Results 11 to 18 of 18

Thread: Hair Loss.....

  1. #11
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,992
    Post Thanks / Like
    Mentioned
    24 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Hair Loss.....

    Hi, RandS,
    Welcome to the group! I'm sorry your husband has GPA, giving you a reason to come here. I haven't seen cutehair on here for awhile, though she could see your post if she is notified or checks in . I have never had those ulcers, but can certainly relate to the hair loss. I would suggest that you write an introductory post to the general membership so that more people will see it. Although you may get some response here, and I hope you do. The main page of the forum will show a section for new members stories and introductions, and you'd be starting a new thread. I haven't been there for awhile because I use Tapatalk on my phone to keep up with the forum. So maybe you did post an intro and I missed it! It's not a requirement, but I think people always take notice of a new member. I'm glad you found us, and best wishes to your husband in getting control over this wacky disease, and to you for being a caretaker.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

  2. Likes Alysia liked this post
  3. #12
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,160
    Post Thanks / Like
    Mentioned
    36 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Hair Loss.....

    Quote Originally Posted by RandS View Post
    Hello cutehair2013, I'm new to this site. I am a wife to a GPA patient. I read your post, sounds alot like my husbands symptoms. You did mention leg ulcers. Can you tell me more about those. My husband has a real bad one, he has had for over a year. Tried many things for it. The one drug that was working was Dapsome. It was causing lung problems. So the docs took him right off of it. Now he is taking Mycophenolate. He has now broke out with around 10 ulcer spots!
    Welcome to the forum. I think that the new ulcers means that the wg is not treated strongly enough. Can you consult with wg expert and ask for another treatment ?
    Like Anne wrote above, if you start a new thread, more friends can notice and relate.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  4. Likes annekat liked this post
  5. #13
    Join Date
    Jun 2017
    Posts
    18
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Hair Loss.....

    My situation was similar to GoldenJen....it was the prednisone that caused my hair to become brittle and break....I feel like I lost about half my hair...but maybe it wasn't that bad...just feels that way at the time! About 9 months ago I came off pred entirely and since have noticed waaaaaaay less breakage. Sorry that you're experiencing this symptom as well! I say dye it hot pink & call it a day!!!

  6. #14
    Join Date
    Nov 2020
    Location
    Iowa, USA
    Posts
    28
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Hair Loss.....

    Hubby and I agree I’ve lost at least 2/3 of my hair so far. I’m guessing it could have been caused by “rapid” prednisone taper, from 80mg to 5mg in about 4 months’ time.

    It’s not a big deal to me, honestly, but I was wondering if anyone who experienced hair loss has had it grow back?

  7. #15
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,370
    Post Thanks / Like
    Mentioned
    20 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Hair Loss.....

    Especially if you’re taking methotrexate, hair loss is a side effect. You can take folic acid to reduce hair loss.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  8. Likes Dirty Don liked this post
  9. #16
    Join Date
    May 2022
    Posts
    21
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Hair Loss.....

    Hi! Well I'm very late to this thread (newbie here!) but I can say I've lost about 1/3 of my hair and I'm on methotrexate 15mg/week and now the Rituxan infusions. When I first started taking the methotrexate and steroid combo I had very long thick hair and I knew that would go away. I've had long hair all my adult life (over 30 years) so silly as it sounds, that was going to be one of the harder side effects of my GPA...I do much better with straight pain honestly. But as a pre-emptive move, I decided to cut 9+ inches off my hair in October when the diagnosis was made and I donated it to children with hair loss. At least it went to good use and puts me at peace with what my hair looks like now. I also think I'm getting used to the super thin, straggly hair. It isn't lush and long like before but it is easier to wash at least. I'm sorry for you and anyone else dealing with the hair loss and believe me I'm not trying to make light of it (I've had many good cries over mine!) but I find if I can just put it in perspective to what some others have gone through it isn't as bad to deal with. On the bright side, I've purchased a few gorgeous wigs and if my hair falls out even more I can't wait to use them! Best of luck.

  10. Likes chrisTIn@, drz, Masha liked this post
  11. #17
    Join Date
    May 2022
    Posts
    8
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Hair Loss.....

    Okay, so I will most readily admit hair loss is important to me. In fact, I have always been exceedingly vain about my appearance. There, I said it. I wish I could get over it, and I am slowly doing so, finally, and at my age, it's about time. But I would be lying shamelessly if I tried to say I'm becoming at all indifferent about my hair. So I truly feel your pain, and I hope I have good news.

    When I took cytoxan at the time of my diagnosis 16 years ago, my hair fell out in bunches. Literally in ropes. I have always had thick hair and I wore it long and I would judge I lost about 1/2 to 2/3 of it before they finally took me off the cytoxan and switched me to methotrexate. I was taking prednisone through it all, so either or both drugs may have contributed to the hair loss. However, it seems to me that when they stopped the cytoxan my hair loss stopped or slowed substantially. By that time, I was also feeling much better and my labs had improved. I got my hair cut short so the thinness was a little less apparent as it began to grow back in. And as I slowly tapered the prednisone and the methotrexate to a maintenance dose, it came back just as thick and healthy as before (or at least it seemed to me).

    About 4 to 5 years later, I had a pretty bad flare that lasted about 6 months before it was recognized as a WG flare. I was kind of "walking sick" with that, and was taking multiple courses of strong antibiotics for what was thought to be a recurring sinus infection, and I got pretty run down. When it became clear that this was a WG flare, I had my first Rituxan infusion. Not long after that, I had an episode when my hair fell out quite a bit one time after I washed it. It wasn't as bad as when I had the cytoxan, but it alarmed me a bit. It never happened again, and I've taken Rituxan many times since then.

    So I think the drugs contribute to hair loss certainly, but I think the disease activity is also a big factor. If you think about it, we often take these strong drugs when we're very sick. And those are the times I have noticed the most hair loss. I continue to take strong medications, but my hair loss seems to have resolved. At least, I don't notice it anymore. And believe me, I would. In fact, I donated a big bag of 10" ponytails to Wigs for Kids 3 or 4 years ago, and got a letter thanking me in return.

    So take heart. I think your hair will grow back and and be as cute as ever.

    As a veteran of hair vanity, I'll share my regimen. I use a good quality shampoo. I always use a thick good quality conditioner when I wash it and leave it in at least 5 minutes. If you can leave it in an hour, that's better. I don't rinse it out completely so there's still some of the conditioner left in, especially at the ends. Rinse it with cold water. Over time, this will strengthen the hair and give it more body.

    Good luck, everybody!

    Ruby

  12. Likes dolfinette liked this post
  13. #18
    Join Date
    May 2022
    Posts
    21
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Hair Loss.....

    That is awesome news, Ruby! I've never taken cytoxan but I suppose if the Rituxan doesn't work we'll see LOL. But it is nice to know there is hope for my hair if I can finally get into remission. Huge respect and thanks from another former veteran of hair vanity!

    Arlene

Page 2 of 2 FirstFirst 12

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •