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  1. #1
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    Default Hair Loss.....

    Hello everyone,

    I have done some looking around about hair loss on the site and nothing seems to be what I am experiencing. A short ok, semi short updateon the last year….

    In January, my numbers went mad and I was not fairing very well, my doctor had switched my maintenance drug from Imuran to MXT. I feltthat the MXT was the issue but lost the fight so the doctor put me on 60 mg of prednisone to calm everything down. After months on the high dose things were not gettingany better so the decision was made to have RXT infusions. After a month of my refusing and fighting to have the MXT taken away to see if that what was making my numbers go mad, I agreed to the RXT treatment, as I was not doing well at all and honestly could not handle much more. At the time of the infusion in April,I was still on 60 mg of prednisone, and the clinic nor the doctor took this into consideration when they gave me prednisone at the time of the infusion. Needless to say I totally ballooned…my cheeks were so big my skin was shiny and my left leg looked like a stump from the water retention. I had to change positions at work for a position that worked from home, as I could no longer get into the office every day; additionally I was not looking so great between the swelling and some crazy rash that took forever to go away.

    Since the RXT treatment, I have been able to change back to Imuran as the MXT caused many complications that my doctor finally listen to meabout. (Thankful for prednisone crazy outbursts). Overall, I am starting to feel better and feel like the worse if over for right now. Then about a month ago,I started to notice that when I brushed my hair I had a lot of hair in the brush. A LOT! As you can see by my name, I have cute hair….well cute thin hair at this point and have to admit freaking out a lot here. I have always said that since being diagnosed with this condition I have been “lucky” to not look sick… I have a mobility limitations and a noticeable dip in my nose but overall managed and worked hard to not looksick. This year has changed everything, in March I had a face rash so bad I could not leave the house it was horrible. I can handle the extra weight… not happy about it, but can deal with it. I can deal with the bump in my nose, swelling legs, leg ulcers, and even the rash….. but hair loss I draw the line! Through all the yucky days of treatment the joke has always been “but I have cute hair”now the joke is my bathroom floor has cute hair!.

    Ok, sorry for the rampage this is throwing me for a loop….. any suggestions on minimizing hair loss and a good recommendation for a place to purchase a wig. I took Folic Acid throughout the time on MXT the hair loss started months after switching off this med. Which sadly is not far off
    Last edited by cutehair2013; 10-13-2017 at 04:31 AM.

  2. #2
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    Default Re: Hair Loss.....

    Quote Originally Posted by cutehair2013 View Post
    Hello everyone,

    I have done some looking around about hair loss on the site and nothing seems to be what I am experiencing. A short ok, semi short updateon the last year….

    In January, my numbers went mad and I was not fairing very well, my doctor had switched my maintenance drug from Imuran to MXT. I feltthat the MXT was the issue but lost the fight so the doctor put me on 60 mg of prednisone to calm everything down. After months on the high dose things were not gettingany better so the decision was made to have RXT infusions. After a month of my refusing and fighting to have the MXT taken away to see if that what was making my numbers go mad, I agreed to the RXT treatment, as I was not doing well at all and honestly could not handle much more. At the time of the infusion in April,I was still on 60 mg of prednisone, and the clinic nor the doctor took this into consideration when they gave me prednisone at the time of the infusion. Needless to say I totally ballooned…my cheeks were so big my skin was shiny and my left leg looked like a stump from the water retention. I had to change positions at work for a position that worked from home, as I could no longer get into the office every day; additionally I was not looking so great between the swelling and some crazy rash that took forever to go away.

    Since the RXT treatment, I have been able to change back to Imuran as the MXT caused many complications that my doctor finally listen to meabout. (Thankful for prednisone crazy outbursts). Overall, I am starting to feel better and feel like the worse if over for right now. Then about a month ago,I started to notice that when I brushed my hair I had a lot of hair in the brush. A LOT! As you can see by my name, I have cute hair….well cute thin hair at this point and have to admit freaking out a lot here. I have always said that since being diagnosed with this condition I have been “lucky” to not look sick… I have a mobility limitations and a noticeable dip in my nose but overall managed and worked hard to not looksick. This year has changed everything, in March I had a face rash so bad I could not leave the house it was horrible. I can handle the extra weight… not happy about it, but can deal with it. I can deal with the bump in my nose, swelling legs, leg ulcers, and even the rash….. but hair loss I draw the line! Through all the yucky days of treatment the joke has always been “but I have cute hair”now the joke is my bathroom floor has cute hair!.

    Ok, sorry for the rampage this is throwing me for a loop….. any suggestions on minimizing hair loss and a good recommendation for a place to purchase a wig. I took Folic Acid throughout the time on MXT the hair loss started months after switching off this med. Which sadly is not far off
    Good to hear from you, cute hair, and what a lot of ups and downs you have been through. You could try taking folic acid again, though I'm not sure if it works that way with other drugs than MTX. Someone will argue with me, and I hope they are right! Anyway, glad you are now on RTX, and I hope that goes well!

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

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    Default Re: Hair Loss.....

    I did rituxan in february, my hair loss started in may. Its BAD. I had long hair i was proud of, but my husband gave me the go to cut it short in june because of how bad it was falling out. It still is....not giving you alot of hope. I have bought very expensive shampoos that have helped to make it LOOK fuller. I dont know...i have to think of ways it could be much worse and it helps me calm down.

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    Default Re: Hair Loss.....

    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!

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    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.

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    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!!!

  8. #7
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    Default Re: Hair Loss.....

    There seems to be variety in how bad the hair loss is for different individuals. I don't think I've heard of a Weggie who has lost all their hair, as most cancer patients seem to under stronger chemo. I was never on RTX but it did thin on CTX, and now that I've been on MTX with folic acid, it may have thickened a little, but I'm at the age where it thins naturally. It's my understanding that the folic acid with MTX is for other reasons, to combat certain other side effects, but the help with the hair loss is a welcome bonus. I do think that if you get into remission and are able to get off the meds, your hair will grow back and may be thicker than before, and I've even heard of formerly straight hair growing back curly!

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

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    Default Re: Hair Loss.....

    Hi cute hair. I dont have hair loss due to rtx but I also have second disease, microscopic colitis, and because of bad nutrition I had hair loss. I can tell you what helped me: I found a multi vitamin (that I could bear, because I couldnt bear many of them) which is called Roots. Its specific for hair loss and should be kept in the fridge. https://www.vitaminglobal.com/roots-...l#.WeV3CstBzqA
    I also checked many kinds of shampoo. Interesting, the best shampoo comes from Australia https://aussiehair.com/en-gb/shop-pr...iracle-shampoo
    Its a trial, to find the right shampoo and the right multi vitamin. I am member in a group of microscopic colitis and they also adviced to take multi vitamin which is called: hair, nails, skin. I didnt try it yet.
    Good luck.
    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.

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    Default Re: Hair Loss.....

    Thanks everyone for the feedback…….I see my Rheumatologist this afternoon and it is at the top of my list to talk about. I stopped into the health food store and picked a few different types of Vitamins in hopes I can take them. My Rheumatologist is very picky on what I can take. We will also be talking about doing another round of RXT, which I do not agree with. I have not found that I have had the benefits that he said I would get.
    Again thanks everyone for the feedback!

  12. #10
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    Default Re: Hair Loss.....

    Quote Originally Posted by cutehair2013 View Post
    Thanks everyone for the feedback…….I see my Rheumatologist this afternoon and it is at the top of my list to talk about. I stopped into the health food store and picked a few different types of Vitamins in hopes I can take them. My Rheumatologist is very picky on what I can take. We will also be talking about doing another round of RXT, which I do not agree with. I have not found that I have had the benefits that he said I would get.
    Again thanks everyone for the feedback!
    Rtx is a very good med. It helps many of us. Sometimes it takes 2 rounds to start feeling way better. I think that if he suggests another IV you need to listen to him. It is VERY expensive med and docs are not willing easily to prescribe it, unless there is a good reason.
    As for the hair loss, you shouldnt take it into account. What really matters is to stop the wg activity.
    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.

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