Hair loss?

Hello all, I'm just wondering if anybody has ever experienced any sort of hair loss with any of the meds (or with ulcerative colitis in general). I'm having alot of hair shedding and this is the 2nd time I've had a massive hair shed. The first time was about 6 years ago and the shedding lasted for over a year. I lost about 3/4 of my hair but luckily had very, very thick hair at the time. So I basically ended up with thin, fine hair after it was all done. It never totally grew back, and now it seems as though the same thing is starting all over again. Except this time I am starting with the thin hair so I don't have any to spare. I'm starting to get small bald spots (luckily, for now, under the top layer of hair so I can cover them up with longer hair).
I've had a scalp biospy done this time (as last time no doctor would really believe me or help me) and am waiting for the results. I'm wondering if anybody has ever experienced hair loss after stopping a course of prednisone? I was taking Pred over the summer for a few months to get over a bad flare. I stopped in Sept though. The only other thing I can think that has changed is I have been taking the mesalamine enemas every night since the summer, which is not something I used to but needed to this time to stay in remission.

Any help would really be great as the thought of losing my hair (as a woman) is really freaking me out and depressing me!

Thanks everybody, I hope things are going well,
Nikki

Yes, I'm definitely having hair loss; I think mine is from Remicade though. I also used to have really thick hair and lost at least half of it during my first flare, which left me with some thin hair. For the last two months I've been losing more and more hair. When I told my GI about it, he said "what makes you think it's from these drugs?" Uh, what else could it be???

Today I noticed that when I part my hair down the middle, about an inch off to the side has no hair! I am freaking out as well!

Oh, I hope I never have to take pred! I'm still recovering from the acne caused by steroid suppositories and I really don't want my facial hair to grow faster or thicker, haha.
I think I'm going to call my GI this week and I also see my PCP next week. My hair used to be so beautiful and it was the only thing I'd get complimented on physically; I feel so sad that it's gone :(

http://www.wrongdiagnosis.com/symptoms/hair_loss/side-effects.htm Both Asacol and Colazal (and the generic forms) are on that list.

Well, according to my GI, I am in remission; he thinks that my remaining symptoms are just IBS. My GI swears that the rectal meds don't cause side effects either! When I had asked him about it, he said "What makes you think that?" ARGH. What else is it going to be?

Let us know how your derm appointment goes tomorrow!

My derm thinks my hair loss is from pentasa. He started me on mens rogaine once/day. In about a month I stopped losing hair. In about three I started seeing little one inch new growth. My goal was to stop losing - I don't care either way if I grow more. I am now taking it about twice/week.

I know conventional knowledge says you have to use it daily. But my derm said it differs for everyone and differs based on what is causing the hair loss. If I can use it twice/week w/ out losing more hair, great.

I know I'm a little late, but I thought I would chime in with my experience. I had a really bad flare last summer and lost 30lbs. They put me on Prednisone from the end of July through mid-September. I started noticing major hair loss in Aug, and it continued until mid-December. I have really thick hair, so it was not noticable to anyone but me. I believe it was the prednisone that caused it though. I was told that the side effects from pred could last a few months after I finished taking it. But it could have also been due to being malnurished, since I had lost so much weight.

I have heard Biotin helps a lot, although I didn't take any. There is Biotin in my multi-vitamin though, and when I am consistant with taking my vitamin, my hair and nails typically grow at a faster rate.

Good luck!

 

           I too have had really bad hair loss in the past few months. Was on 60mg of prednisone for a bad flare, and began tapering off, and that's when hair started falling out. I would get so depressed just washing my hair, because when I would brush it, I would just pull out these huge clumps with my brush. I started taking folic acid 800mcg, biotin 5000mcg, and also started using hair masks!!! The hair masks that I used were the "Biolage Intensive Strengthening Masque" and "Neutrogena Triple Moisture Deep Recovery Hair Mask". They are both amazing!!!! and smell so good. Basically lather your hair with it after shampoo, and keep it on for about 20 min, then rinse. Has made a world of a difference!!! However, I think its a combination of the vitamins and the hair masks, because if you're lacking something on the inside, no shampoo and/or mask is going to help much. Also , I started eating more foods with protein, more chicken, eggs, etc....(Our hair is mostly composed out of protein.) Try this out guys. Hope this helps. The Neutrogena hair mask is about 6 or 7 dollars, as opposed to Biolage mask which is 16. But Biolage is my favorite:)

I had hair loss a few months after my initial diagnosis - lost 15 pounds in 2 weeks, hospital for 4 days, etc. In general, my doctor said, anytime after going through a major trauma or illness, hair loss can happen. I believe that was the case for me as future flares have been less severe and I have not had any hair loss issues. I am on and off Prednisone every 3-4 months as well and haven't noticed that causing any hair loss for me.

I started taking Biotin a couple of weeks ago. I have always thought that the Lialda is causing my hair loss. My hair has always been really fine, so when I lose it I really notice! I think I might add in the Folic Acid too! I hate taking so many meds, but I don't want to be bald! Having UC is bad enough, it's not fair that some of us get the hair loss too! What's next??? I might also try the hair mask mentioned above. Angievirsep93, does it leave your hair greasy at all?

Happychic,

the hair masks do NOT leave my hair greasy at all.  Here is what I do: I shampoo, then use conditioner, (and make sure you use a really moisturizing conditioner. ) Then I wash it off, and lather on the hair mask.(Also, be sure to put a good amount from root to tips, really rubbing it in your hair so you get all of it.) Here is the most important thing: Even though it says on the bottle to keep it on for 5 -10 minutes or so, I actually keep it on for about a half an hour. I literally get out of the shower, and walk around with it in my hair. Sounds like a bit of a hassle, but trust me, it has made a world of a difference. So then afterwards, I get back in and rinse it off. Oh and one more thing!!! I also started use a detangler/leave-in conditioner afterwards. I just spritz it all over my hair, and it makes brushing much easier, and hair is smoother and breaks much less (recommended by my hairdresser! ) It is by the brand "Wella color preserve" and it's in a long red bottle.  This and the masks have helped tremendously!!! Also, I think the folic acid and biotin don't hurt either.  Let me know how it goes if you try it:)

sicklygirl said...It is annoying because the hair has to be lost from our heads, I wish the hair would fall out of my arms, legs or lip...

So true! I love the hair on my head but not the hair elsewhere.

This may be a stupid question, but when you start taking biotin or folic acid, does that increase hair growth everywhere or just on your head?

My parents think that I'm overreacting with the hair loss. So I guess I'll just try using those hair masks and see what my PCP says next week.

Happychic,

I use the mask once a week now.  When I started to use them about 2 months ago, I was using it twice a week.  I alternate between the Biolage and the Neutrogena. The Biolage mask you have to buy in a salon or an ULTA store. (They sell out fast, because the ULTA stores in Philly where I'm from, were all out of them this week!!!! Guess there is a fan club, LOL.)  However, the Neutrogena mask you can buy at any pharmacy, etc. I get mine at Rite-Aid. The Neutrogena Triple Moisture deep recovery mask ($7) comes in a 6 oz bottle, and has an orange top. The Matrix Biolage intensive strengthening mask ($16) comes in a 5.1 oz bottle, and is in an all white container. They both smell absolutely amazing!!! I would recommend the Biolage one first, I think it is stronger, but the Neutrogena one is awesome for maintenance. Good luck!!!! Let me know how it is!!!!

I have had a lot of hairloss too and thought it was from the remicade. My sister-in-law is a hairdresser and she said to go back two to three months from when it started and look at what was going on then. That was just before my 12 day hospital stay, so malnourished, lost almost twenty pounds in three weeks. I really think that's what caused it now. She gave me some nioxin and I have noticed a big difference. Losing much less and tons of little sprouts all over. My hair was not super thick to begin with but not thin either. I've lost at least half to three quarters. She had me use nioxin #1 three product set first, now on nioxin #2. Not sure what the difference is but the second set came with a daily supplement for two weeks. I'm a little hesitant to try it because the past few weeks have been pretty good for me and I don't want to do anything to disrupt that.

Miss