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Hair loss from Azathioprine and UC?

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Posted 9/26/2016 7:14 PM (GMT 0)
Hello, I visit healingwell a lot but this is my very first post. I am 19 and was diagnosed with UC nearly 5 months ago in May after suffering with symptoms for 3 months prior. I was put on 30mg prednisolone and mezavant XL (masalazine) however my symptoms got worse and I was hospitalised for 2 weeks in July. Fortunately I responded to treatment just in time and did not require surgery. When I left hospital I was started on 100mg Azathioprine and humira along with 60mg prednisolone. I felt nausea for the first week but had no other side effects from the Aza. I spent just over 3 months tapering down the prednisolone and did not have any problems with hair loss for the whole time i was on steroids. I stopped the humira and prednisolone at the same time 4 weeks ago. So I am now only on Azathioprine which is controlling my symptoms really well - formed stools once a day with no blood or urgency! The only symptom I have now is joint pain in my fingers, knees and feet.
I thought azathioprine was a wonder drug but 3 weeks ago it gave me nausea again and then it made me start losing hair :( The nausea subsided but hair loss seems to be getting worse. I naturally have a lot of hair but it is quite fine. The hair seems to be shedding evenly all over but it is constant and I notice it especially when I wash my hair and handfuls seem to come out. Brushing it is just depressing as I see so much come out :( It is not very noticeable yet however I am scared that this will continue to get worse. My GP said I could try a product called Regaine for Women, has anyone else tried this? Does it work? Are there any other products I could try?
I don't quite understand why I am only experiencing hair loss after coming off prednisolone... could it be because it took 3 months for the Aza to start working properly? Has anybody else experienced hair loss on this drug, if so how long did it last? I hope it is only temporary, I don't want to wear a wig :/
Thanks guys.

Post Edited (messthezombie) : 9/26/2016 1:17:12 PM (GMT-6)

Posted 9/26/2016 7:48 PM (GMT 0)
Hi and welcome to the forum. Hair loss and thinning hair is a common complaint with uc patients. There are many possible causes, just having uc without any medications can result in hair loss, every class of uc medication from mesalamine, to immunomodulators, to biologics lists hair loss as a possible side effect despite having very different active ingredients and mechanisms of action.

Often hair loss is a delayed reaction to a uc flare. It's a common complication with uc to have Anemia (low iron levels), low vitamin D levels, and low vitamin B or B12 levels all of which can cause thinning hair.

Can Imuran cause hairloss, yes, but so can many other things. Ask your general practitioner for some blood tests to see if there's anything out of the ordinary in your bloodwork.

If the hair loss is a delayed reaction to the stress and potential malnutrition of a flare then it should moderate and recover as you feel better and replenish lost nutrients.
Posted 9/27/2016 1:01 AM (GMT 0)
iPoop has a lot of great points. Hair loss from meds, the UC flare, malnutrition, etc.

For me I ALWAYS shed hair after prednisone. Every single time. I even shed when I get off steroid enemas. I don't lose any (extra because on average we lose about 100 hairs a day) while I'm on the steroids just towards the end of the taper and then when I'm completely off.

It will stop. It may take some time. I know how awful it feels and I'm so sorry you're dealing with it but it will stop!
Posted 9/27/2016 9:28 AM (GMT 0)
Hi I had hair loss after starting azathioprine too but it will get better.
Posted 9/27/2016 4:00 PM (GMT 0)
Sorry to hear your losing hair. My husband has had much success with these special hair loss shampoos, his hair has definitely thickened (he doesn't have UC), and so it is worth a try I think.
Posted 9/27/2016 4:07 PM (GMT 0)
Zombi I have question for you. Why did you stop Humira? Did you developed antibodies or they just use to get you in remission?

Also hair loss is due to combination of drug,flare and over all health. Make sure you take vitamins.
Posted 9/29/2016 1:12 PM (GMT 0)
Pam I stopped humira because my consultant only wanted me to use it as a stepping stone treatment to keep things under control until the azathioprine kicked in. I don't think I developed antibodies. I think my consultant is more experienced with azathioprine than humira so didn't plan on using it long term, but she is willing to put me on it again if my symptoms come back.
Posted 9/29/2016 3:16 PM (GMT 0)
Thanks. I always wonder about it why they don't use in place of prednisone to get you in remission and then discontinue it. Since you are on azathioprine, it won't develop antibodies. Makes sense to me.
Posted 10/1/2016 1:41 PM (GMT 0)

TotesMagotes said...
iPoop has a lot of great points. Hair loss from meds, the UC flare, malnutrition, etc.

For me I ALWAYS shed hair after prednisone. Every single time. I even shed when I get off steroid enemas. I don't lose any (extra because on average we lose about 100 hairs a day) while I'm on the steroids just towards the end of the taper and then when I'm completely off.

It will stop. It may take some time. I know how awful it feels and I'm so sorry you're dealing with it but it will stop!


I didn't really think about the other possible factors causing my hair loss. It is interesting that you experience it after prednisone, how long does it normally take for you to stop losing hair?
Posted 10/1/2016 5:50 PM (GMT 0)
It usually depends on how long I was on them and how high I started. My last taper was 10 weeks and I started at 40 mg. I started to shed right as I was finishing the taper. It lasted about 6 weeks. Granted I peaked around 3 weeks and then it slowly stopped falling out. I've read so many stories about hair loss and this disease. For many many people there are multiple factors but for most it stops and grows right back. That's what kept me from really losing my mind. It's so hard as a woman to lose hair.

I really like your doctors approach on using the humira to bridge the aza. Is the aza keeping you in remission? I hope you're feeling well!!

Much hugs.
Posted 11/3/2016 2:43 PM (GMT 0)
My daughter grace was diagnosed with crohns disease I middle school. we were able to keep flares under control until this past summer. After 6 mos of prednisone and starting 100 mg imuran she is doing much better. We started noticing hair loss in september do md decreased dose to 50 mg. Will hair loss get better? She is 16 and this is upsetting her. I hate to change meds because she responded so well and for the first time in years seems to have more energy
Posted 11/7/2016 2:48 PM (GMT 0)
I had the same thing happen. I'd cut your hair shorter, not necessarily a bob (unless you want to), but shoulder length. The weight of the hair and putting it in a ponytail can make the hair loss worse. A lot of it will grow back too, but it may never be as thick. I have an identical twin and hers has always been thicker than mine since the hair loss, but it's not like I'm bald! I still have nice hair.
Posted 11/26/2016 10:08 PM (GMT 0)

TotesMagotes said...
It usually depends on how long I was on them and how high I started. My last taper was 10 weeks and I started at 40 mg. I started to shed right as I was finishing the taper. It lasted about 6 weeks. Granted I peaked around 3 weeks and then it slowly stopped falling out. I've read so many stories about hair loss and this disease. For many many people there are multiple factors but for most it stops and grows right back. That's what kept me from really losing my mind. It's so hard as a woman to lose hair.

I really like your doctors approach on using the humira to bridge the aza. Is the aza keeping you in remission? I hope you're feeling well!!

Much hugs.

I think you could be right about the hair loss being from stopping steroids - its been about 8 weeks now since hair loss started it has reduced a lot! I can see new hairs growing which is great :) The aza was keeping me in remission until last week when I started to flare again, had to go on 30mg prednisolone :( the steroids have worked pretty quickly though so I am hopeful this is just a minor set back, my consultant did mention possibly increasing my aza dose in the future if this happens again.
Posted 11/28/2016 6:16 PM (GMT 0)
I was on Prednisone for about a year, when I got off I lost tons of hair. That lasted about 3 months. It has slowly grown back (this was almost 4 years ago now). I did lose about 3/4 of my hair though and it looked very thin. My dermatologist told me to get a laser comb. It wasn't cheap (is cheaper now than it was back then), but it really did make my hair grow back faster than it normally would. It reactivates the resting hair follicles (which were most of the ones on my head at the time, I had a scalp biopsy to prove that).

I think it's the hormone drop/androgen change in reducing the steroid that makes it fall out. Hard to get any doctor to really agree to that though. Even steroid enemas make me lose a little hair now as my hair is still thin (but at least semi-normal now).
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