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Posted 1/6/2011 4:46 AM (GMT 0)

  cry IM GOING BALD!

i got diagnosed with UC 13 Oct 2010. since then i have been taking Asacol....and im having horrible side effects!

im 27 yrs old, WAS super healthy...and then BAM! this happens! "What...me? why?!?!" first thoughts..now its--- how can i make handle this without going insane, depressed, and miserable.

what did my doc say--lower dosage to 4 pills instead of 6....WHAT?!

im STILL going bald, now i hand actual quarter size bald spots on my head!!!

im retaining water and weight

im depressed more now than ever....what is going on?!?!

IS ANYONE ELSE GOING THROUGH OR HAS GONE THROUGH THESE SAME SYMPTOMS?

i am trying to go "All natural, organic"... and i have changed my diet 100%

what am i doing wrong?

Can i take a different medication other than the Asacol---so i dont have these syptoms anymore?

PLEASE! someone give me some advice...pls.

Thank you and to everyone....you are all in my prayers! I have faith somehow someday, we will all have a cure for UC.

Posted 1/6/2011 5:10 AM (GMT 0)
First of all, how is your UC? Are you on anything besides Asacol? Pred?

Asacol causes hair loss but I thought it was a thinning out, around your crown. I hadn't heard of bald spots. That's not very much Asacol you are taking to get a devastating hair loss like that.

I made the mistake of lowering my Asacol too much because I was concerned about hair loss. I'm now back up to 8 a day, plus enemas.

Are the bald spots showing any sign of regrowth? Have you consulted with your beautician?
Posted 1/6/2011 5:14 AM (GMT 0)
i am so sorry you are having these troubles. it seems like you try to fix one thing, and another thing gets all messed up! is asacol the only drug you are on? sometimes prednisone can cause hair loss as well. i had significant hair loss with asacol, and then later with prednisone - i shed out tons and tons of hair, and i wondered what was going to happen. i was worried i'd be bald. my doctor had little sympathy, and no suggestions for me. eventually it did stop after months and months. the hair grew back thank goodness. it seemed like my body just had to adjust to the medication. hopefully that is what is happening to you and it will taper off and grow back. hang in there - i totally know what you are going through - it is extremely upsetting. i have also heard some people speak of taking biotin to promote hair growth. also, you might want to check and see if you are anemic (which many uc-er's are), because that can cause hair loss. thyroid problems can cause it as well - you might want to check that out just to be sure it is medication related. i went to a dermatologist to see if there was anything else i could do. ultimately, i just had to wait it out and thankfully the hair grew back. there is another medication called colazol, but i had hair loss with that as well. another med is called sulfasalazine, but i don't know if hair loss is a possible side effect. a pharmacist could tell you that. hang in there, and i hope things improve for you!
Posted 1/6/2011 6:10 AM (GMT 0)
I think Asacol caused me to lose a lot of hait but it stopped after I had been on it for a few months and the hair has grown back. Like Kate said, I also lost a lot of hair when I was anemic. You may want to get checked for anemia.
Posted 1/6/2011 5:53 PM (GMT 0)
I am going through the same. I was 29 when first diagnosed with UP. I been bodybuilding (not professional but as hobby) since i was 19 or so. I eat right , i lift weights and exercise harder than most people will ever in their lives and i got it. Trust me i was in the same boat as you. I hardly drink that much, i don't smoke, i eat right, i get the right amount of sleep. I kept saying, "why me, what did i do!!!" After my doc beat it into my head that there was NOTHING i could do and they don't fully understand how this is triggered i started to feel better. At first i didn't believe it and thought maybe it was my lifestyle, maybe i got it at those nasty dirty gyms (even though i wash my hands a lot). I came here and read that women get it, men get it and even children. I was shocked but that is when i realized ok this has to be something that is just in people and some how something triggers this disease to show its ugly face. So now that i have it i can stop asking why me and start saying lets find out how to combat it. Living in the past and dwelling on my life before UP isn't going to help me one bit.

I started losing my hair at 25ish and at first it sucked. I was devastated at the time. After all i had good looks, nice body and a good personality but now i don't have all my hair ! lol Well at 30 i still have thinning hair and i have given myself one more year and i am shaving it all off. Again i fall back to what i said before. There is nothing i can do to get my hair back so i face that fact and move on. In the bigger picture its hair. I have the use of my legs/eyes/ears/hands etc. If i need to give one thing up then hell you can take my hair without asking me twice. If anything it helps me come up with more jokes. My hair is so short i can't even comb it but when i am around my friends and we are going out i yell in a panick "WAIT," they all look at me. I then say "Quick does anyone have a comb, i need to do my hair before we go?" They all look at me for about 2 sec in shock then we all start laughing.

It's life man. Lots of people have it A LOT worse then us. Just enjoy life as much as you can and try your best not to worry about the small stuff. Good luck !

Sorry if i rambled to much but i am off today and have nothing to do LOL.

Post Edited (Dsm4life) : 1/6/2011 10:56:43 AM (GMT-7)

Posted 1/7/2011 5:59 AM (GMT 0)
Dsm4life did you by any chance drink protein shakes whilst you gymed? I downed heaps of them whilst at the gym to gain muscle mass. Not sure if they are related in any way to developing UC.
Posted 1/7/2011 7:00 AM (GMT 0)
Maximilian..interesting observation...though, another possible "cause" of UC...I worked out feverishly when I was in my teens/20's and I did use protein shakes..and some "special" mixes that I can't remember...
Posted 1/7/2011 7:39 AM (GMT 0)
I just saw on the news today that there is great prospects for finding a cure for baldness, not only that, but the cure should work for those who are already bald.

http://www.theepochtimes.com/n2/content/view/48699/

http://www.thirdage.com/news/baldness-stem-cell-discovery-may-lead-new-treatment_1-5-2011
Posted 1/7/2011 12:19 PM (GMT 0)

I was taking Asacol for 6months and now take Apriso.  I used to have thick long hair.  My hair is noticeably thinner since I was diagnosed with UC and started taking meds.  I find this very frustrating.  I've had to resort to using a scalp cover up (Joan Rivers).  I also use Living Proof Hair Thickener which helps for volume.  Recently I tried a 3 barrell curling iron and that really makes my hair look thicker.

History- Diagnosed UC Dec. 2009

Apriso  - 4 capsules a.m.

Metamucil - one dose daily

Probiotics

Vitamin D

Posted 1/7/2011 12:46 PM (GMT 0)
See if you can switch medications. Asacol is notorious for causing hair loss. What is the extent of your Uc? I'm just curious because if you have left sided or down then you might be able to switch to Colazal, which has a better record for not causing hair loss. Also too, if you are having D your body can deplete it's Biotin. Biotin is produced by many of your organs but a good portion is produced in the intestines. By replacing the Biotin, it can promote hair growth. Have your blood checked for anemia as well as other crucial vitamins and minerals. It can be that you are lacking. Do you take a good multi-vitamin?
Posted 1/7/2011 5:36 PM (GMT 0)

MaxMilian said...
Dsm4life did you by any chance drink protein shakes whilst you gymed? I downed heaps of them whilst at the gym to gain muscle mass. Not sure if they are related in any way to developing UC.

I do drink them. 1-2 min a day.
Posted 1/7/2011 11:41 PM (GMT 0)
I have noticed a definite thinning, in both the quantity and quality, of my hair since being on my 5ASAs. It seems to be more of a spread out/gradual thinning as opposed to bald patches though. As others have mentioned, the other effects of UC could also be causing this - anemia, malnutrition, the stress UC puts on your body/immune system generally. It is really hard seeing the physical toll this can take on our body - I know. I am walking around with a raging case of moon face right now. When I am feeling this way, I try to concentrate on getting my flare under control, firstly, and then think about how the others things will fall into place once the UC is in remission.
Posted 1/8/2011 3:19 AM (GMT 0)

Dsm4life said...

 

I do drink them. 1-2 min a day.

 Interesting. I have stopped drinking them on account of my UC. Will let you know what happens.
Posted 1/8/2011 9:59 PM (GMT 0)
Hi, I have been going through exactly the same thing. I was diagnosed with UC this summer and I’m only 20. At first I was prescribed Asacol, and my hair started falling out like crazy. After I complained to my doctor he switched me to Lialda, but unfortunately it didn’t help. After about 3 month I noticed that my hair loss started to decrease. However, I had to increase my medication and it started again. I know how you feel. It is so painful to be losing your hair at this young age, but this is our life now. I heard that taking biotin helps. Also there is liquid biotin concentrate you can apply directly to your scalp. I’ve tried it and it did help. Don’t focus on the hair loss to much. I know it is extremely unpleasant, but it’s not as bad us UC flair. After all, right now there are a lot of options that can help you deal with hair loss. Try to avoid stress and be positive.
Posted 1/8/2011 10:07 PM (GMT 0)
Protein shakes arent gonna cause UC lol. They are merely meal replacements but the protein is easily digestable as opposed to food. You can also get slow digesting protein powder like Myofusion but yea youre looking at the wrong culprit.

I also have hair loss from Asacol/Pred. I have a few bald spots on my legs that come and go and definitely thinning/balding like mad on my head. Over the last year I've gotten a ton of white hair too which is really weird since Im 31 so I just went ahead and shaved it all off. The sooner you come to terms with the hair loss from the meds, the better off you are. I dwelled on it for a good year and all it does it was make me depressed.
Posted 1/8/2011 10:38 PM (GMT 0)
I've always had thick hair, Asacol, Colazol, Liadla, no different. Maybe siwtching will make a difference for you?

I'm assuming you are female? Well, either way I shaved my head and love it. I'm a dude, but my mom was going through Chemo last year and I really think she looked good too. of course she preferred a wig or bandanna, but it's really not that bad. Losing a arm would be worse :-)


same as you. I have strong faith there will be cure. positive thoughts!
Posted 1/9/2011 12:49 AM (GMT 0)
I have also lost MUCH hair which I believe is due to the Asacol. It is so extremely depressing - it totally ruins my day. I am at the point now where I am going to have to get something to cover the thin spots as it has become very noticeable. I just about fainted in the car yesterday when I caught a glimpse of myself in the mirror with the bright sunlight. I can't hide it anymore with just fluffing it up with spray, mousse, gel. Very, very sad.

I have tried all the vitamins, etc. No help whatsoever.

Oh, and I am female, with no family history of this...even the males in my family have a decent amount of hair. This is just so terribly wrong!!
Posted 1/9/2011 12:52 AM (GMT 0)
seriously, try not to panic just yet. it may stop falling out and grow back - give it some time. i KNOW how distressful this is, as i've been there many times. of course there are worse things that could happen, but regardless it is still extremely upsetting. i have learned i have to be very careful w/my hair and not brush it too hard/too often, because it falls out easily. i also don't use elastic hairbands or barettes, as that pulls on the hair and also makes it fall out easier. mostly i let it airdry or blow it w/the dryer for a moment and then i use the flat iron to style it, because it doesn't pull as much as a brush. i believe there are places that can weave hair into what hair you have and make it look natural. perhaps that could help you? but don't give up on it growing back...it could happen. hang in there.
Posted 1/9/2011 4:17 AM (GMT 0)

I was  on pred and 12 pills of asacol/day.  Add in UC caused anemia and I lost a lot of hair (and I didn't have much to start out with and what I had was thin - I blame my dad).  I started taking Biotin daily and it really helped.  Now I'm post surgery and continue to take it as my hair fell out from the stress of each surgery.  The good new is my stylist commented, last time I got my hair cut that my hair is the thickest it's been for as long as he's known me (approx 10 yrs).  It took some time to take effect but I think that it did work for me to help counteract the hair loss side effect of Asacol.

Posted 1/9/2011 2:23 PM (GMT 0)

Doz79 said...
Protein shakes arent gonna cause UC lol. They are merely meal replacements but the protein is easily digestable as opposed to food. You can also get slow digesting protein powder like Myofusion but yea youre looking at the wrong culprit.

Problem is no one really knows what causes UC. I prefer to stick to a more natural normal unprocessed diet just in case. I've heard mixed results on whey protein. Some say it's bad, some say it's good.
Posted 1/9/2011 9:36 PM (GMT 0)
Hi there

Finally my question has been answered. I'm currently flaring and going to see the dr tomorrow. Towards the end of my last flare, last year, I began taking Asacol tablets. I was already on mild cortizone tablets too. My hair started falling out all over the place and I was extremely upset. My gastrointerologist said he had had no reports of hair loss on Asacol but I was convinced it was the Asacol tablets. As I had stopped flaring, I stopped taking the Asacol tablets and stayed on the Asacol suppositories only. I began taking Biotin and using a hair treatment plan called Vigro available here in South Africa. It comprises a shampoo, a tonic which you use on your scalp after the shower, a leave-in conditioner and nutritional tablets. My hair grew back nicely. Now I'm flaring again and hope I'm not told that I need to use Asacol tablets again...
I know it's horrible. I couldn't accept my hair falling out - I'm a professional singer and can't afford to be bald! But perhaps with supplementation and a good hair treatment plan the bad effects can be counteracted.
Wishing you good luck - it will grow back.
CTC
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