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

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Originally Posted by cutehair2013

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

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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!

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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.

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!

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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.

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!

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Originally Posted by cutehair2013

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!

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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.

For me, I thought I was losing hair and it was falling out at the root and thinning that way, but it was actually just becoming very brittle and breaking. So if that if happening in your situation, read on, and if not, feel free to disregard the rest!! I was on 60 mg pred for about 3 months and then tapering down for about another month and found out it was the pred that caused my hair damage. It didn’t start until I was coming off of it, so I didn’t really connect the two. I also took RXT at the same time, but have had treatments since that havent caused any repeats of this issue. I used this shampoo, conditioner, and mask from Fekkai called Rx Restoratives, but I don’t know if they make it anymore. It seemed to help and had protein in it or something? I looked up my problem online and I think that where I read about the Rx line helping hair loss in chemo patients, because I though it was from the RTX. I also asked my hairdresser about it and how the pred was affecting my hair and she recommended the redkin moisturizing shampoo/conditioner (it was a light blue bottle.) and for the record, I didn’t buy it from her. Those helped me, and I don’t know if it was a placebo effect or not but I was seriously freaking out and was ready to try anything. They are both expensive, but if you can find a good moisturizing shampoo/conditioner that may help. I had long hair at the time and ended up getting it cut to shoulder length/chin length to even out my hair and grew it out again, which was something I did periodically anyway so I decided it was time to cut my hair. It wasn’t completely necessary, just fit my needs at the time. General tips to protect your hair from breakage while it strengthens would be: be careful of pony tails/hair bows that can cause breakage, don’t sleep with you hair up/in a ponytail/bun, don’t brush your hair when wet (if possible. I switched to a wide tooth comb.) Side note, watching my hair “fall out” while in the shower was like a personal horror movie and it freaked me OUT. Every time. Try to avoid heat styling if possible. Hope this can help in some way!!


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Originally Posted by goldenjen

For me, I thought I was losing hair and it was falling out at the root and thinning that way, but it was actually just becoming very brittle and breaking. So if that if happening in your situation, read on, and if not, feel free to disregard the rest!! I was on 60 mg pred for about 3 months and then tapering down for about another month and found out it was the pred that caused my hair damage. It didn’t start until I was coming off of it, so I didn’t really connect the two. I also took RXT at the same time, but have had treatments since that havent caused any repeats of this issue. I used this shampoo, conditioner, and mask from Fekkai called Rx Restoratives, but I don’t know if they make it anymore. It seemed to help and had protein in it or something? I looked up my problem online and I think that where I read about the Rx line helping hair loss in chemo patients, because I though it was from the RTX. I also asked my hairdresser about it and how the pred was affecting my hair and she recommended the redkin moisturizing shampoo/conditioner (it was a light blue bottle.) and for the record, I didn’t buy it from her. Those helped me, and I don’t know if it was a placebo effect or not but I was seriously freaking out and was ready to try anything. They are both expensive, but if you can find a good moisturizing shampoo/conditioner that may help. I had long hair at the time and ended up getting it cut to shoulder length/chin length to even out my hair and grew it out again, which was something I did periodically anyway so I decided it was time to cut my hair. It wasn’t completely necessary, just fit my needs at the time. General tips to protect your hair from breakage while it strengthens would be: be careful of pony tails/hair bows that can cause breakage, don’t sleep with you hair up/in a ponytail/bun, don’t brush your hair when wet (if possible. I switched to a wide tooth comb.) Side note, watching my hair “fall out” while in the shower was like a personal horror movie and it freaked me OUT. Every time. Try to avoid heat styling if possible. Hope this can help in some way!!


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When I tapered off prednisone my hair started falling out. I freaked out, your correct it’s very worrisome when there are first fulls of locks coming out. My Dr said it was because I came down too fast from the prednisone & my body did not like that. I have a terrible time coming off prednisone & the older I get the worse I find this problem.


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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!

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.

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Originally Posted by RandS

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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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.

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!!! :)

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?

Especially if you’re taking methotrexate, hair loss is a side effect. You can take folic acid to reduce 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. :laugh: 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.:hug1:

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

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. :thumbsup: Huge respect and thanks from another former veteran of hair vanity! ;)

Arlene