New Member with hair loss

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Hi,

I'm new to the forum, lingered a few times.

The picture is the top of my head, might be bit of a bad picture, but it's a bald patch with very thing hair covering it

I'm 24, Male and from the Uk.

I was diagnosed with ulcerative colitis disease when I was 18, I was put on steroids for 6 month and then been given Pentasa ever since, twice a day. I go back to the hospital once a year for a meeting with a specialist.

For about 3 years now I've noticed gradual hair loss, to the point where it's visible on the top of my head now, I've tried a caffeine shampoo but that made no difference, my eye brows are thinning, pubic hair pulls out 3-4 strands at a time and I have a patch under my chin where hair doesn't grow when my beard grows.

I rang the specialists, unfortunately it was a woman on the desk as the specialists were busy but she said my medication won't be the cause of my hair loss. I spoke to my GP about it and they put it down to male pattern balding. I shaved all my hair off, skin head. Just because I was sick of touching my bold spot and brushing my hair over it. But I'm beginning to wonder now, after reading some posts, should I pursue it more?

I'm taking 2 Pentasa Sachets a day, so 2g per day.

Full name: Pentasa Sachet 1g - Prolonged release granules - Mesalazine.

I mean, are the other options of medication that could be available worth transferring on to, to prevent this getting worse? As the specialists said this is the best way to deal with the problem, and touch wood in the past 2 years I've had 1 flare up. Which is brilliant.

If the other options have bad side effects but can eliminate the risk of my hair loss getting worse, I may just stick with losing my hair and accept the skin head look.

I'm going to ring them again to try and speak with a specialist properly, but thought I'd put my experiences here before I went to bed.

Thanks, greetings and I appreciate any comments.

There are many different things you could do med wise but I must say that UC really sucks and if you are doing "brilliant" I hardly think it is worth the gamble to get your hair problem under control at the expense of your UC possibly getting out of control. There are several different mesalamines but if that is what is responsible for your hair loss (it can be a side effect) then all of them will probably do the same to you and most all of the other drugs come with even worse possible side effects. It's a question of having hair loss but being a normal human being who can live their life or having a full head of hair but unable to live your life due to UC. Are you sure the steroids weren't responsible? Hair can fall out, especially while tapering, so if you haven't had a chance to see how your hair does while off steroids you may want to give it a shot and see what happens.

Have you gotten a blood test recently? My hair was falling out in clumps early last year. Was afraid to brush it because of all the hair that would come out. Also had the pubic hair thing you did. It was bad. Huge self-esteem killer. Got some Nutri-Ox shampoo. Then I went to my GI for a check-up and he ordered a blood test. Found my hemoglobin was SUPER low and told me to take 2 iron pills a day. Googled it and found that iron deficiency can cause hair loss. And what do you know? Once my iron increased, my hair stopped falling out! It has been growing back since and it's still growing back. Hair growth takes a while. It's still not to where it was because the loss was so substantial, but I would say it's probably 75-80% and no one can tell that I ever lost hair. Only I am able to tell and it's just because I feel like my ponytail used to be thicker (but maybe that's just me thinking I had thicker hair lol)

So if you haven't, definitely get a blood test. There are lots of crazy things we don't know that can cause hair loss. Iron is one, someone else said zinc. Biotin can help too and it causes hair growth everywhere so that could help.

Tone1990 said...

I drink about 15-20 cups of coffee...a day

i hope that was a mistype.

believe me most if not all of UC patients would take baldness over the dozens of side effects or if it meant remission for them.

Tone1990 said...

I reckon I could probably get by without the mesalazine too.

Seems like your symptoms are really stable and what you describe is ibs due to anxiety, well i wouldn't be too anxious to stop the mesalazine as most probably its helping you to stay in remission but at the end of the day i recommend you to consult your GI regarding that, he could take you off mesalazine depending on your inflammation markers history record (Faecal calprotectin, ESR, CRP..etc) in that case i think GIs call it "Deep Remission".

i have a question if you don't mind, how did you get such diagnosis ? colonoscopy and tissue biopsy ?

because if you indeed have UC you're playing with fire in terms of diet, for instance coffee and alcohol almost aggravates anyone with UC even in low quantities.

I drink caffeine (a couple cups of tea a day), beer ( a couple in a week), and enjoy slightly spicey foods with no repercussions the next morning for my uc symptoms. Some people, that would cause issues, everyone is different.

I'd advise you not to discontinue your pentasa. Ulcerative colitis is caused by your immune system attacking the lining of your large intestine, an attack that never stops, and your medication treats symptoms. Taking your medication is your insurance policy that you stay well. Stop your medication and those symptoms will return. Not a matter of if, rather of when. I understand the desire to be on as little medication as is possible. Compared to many of us, you are quite lucky to need only 2 pentasa a day, lol look at all the medication I take in my signature.