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Significant Hair Loss on 6mp

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Crohn's Disease
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Posted 4/21/2011 4:40 PM (GMT 0)
Has anyone had to go off Purinthol or 6mp or Mercaptopurine, all the same drug due to hair loss? My 18 year old is losing it by the handful when she showers. The thinning has become evident. I tried taking a Folic Acid Supplement but she got severe stomach cramps from it. I know it was this supplement because I took her off and they subsided, as soon as I started the Folic Acid back up the Stomach Cramps came back. They are severe. I am thinking we may have to do a med switch because at 18 this is horrible for her.

Thanks so much for the advice.
Posted 4/21/2011 5:06 PM (GMT 0)
One of our members had to get her folic acid via injection. Maybe something to talk to her doc about. I am gonna tell you the truth almost all our meds cause the hair shedding as well as malnutrition will make it worse. DO NOT stop her meds or her Crohns will just get worse. I would rather have some hair shedding and thinner hair (I loose it too, but I am not bald), than have my Crohns out of control. Hugs!
Posted 4/21/2011 5:10 PM (GMT 0)
remicade is doing the samething to me. am going to try adding lots of avacado to my diet and coconut
Posted 4/21/2011 8:53 PM (GMT 0)
My hair has completely changed texture from think to thin...it's noticeable to family members and my hairdresser (and to me, since I clean the bathroom), but so far I can live with it.

I'm not sure which supplements might offset this -- interested in the idea of avocados and coconut. I wonder what else?

Good luck! But, I agree -- don't stop the meds due to this symptom alone.
Posted 4/22/2011 5:47 AM (GMT 0)
I too am losing hair. I added a supplement called Biotin and upped my folic acid to 2 MG and the shedding has slowed. I see an improvement in my nails and skin (prednisone was making my skin thin and papery) so I am hoping that I will start to see some hair regrowth. I would see about getting her folic acid by injection. I think I know how she must feel. I was surprised by how much it mattered to me to be losing my hair. I know it's "just hair" but I really would like to keep it and I hope your daughter can keep hers too, I hope she stays on meds for her crohn's I know I will. It is just hair.
Posted 4/22/2011 12:44 PM (GMT 0)
I tried giving her folic acid supplements on the advice of another member and she developed severe stomach cramping. I took her off it quit, put her back on and it began again. Her doctor said folic acid hampers with the 6mp efficiency and makes it not work as well but I tried it anyway without him knowing she just couldn't tolerate the stomach cramps. I am so glad that you have found a solution. At 18, losing hair like she is is devastating to her.


Thank you so much for your help.
Posted 4/22/2011 2:33 PM (GMT 0)
Biotin is another supplement to try. Maybe that one will work better for her. Good luck!
Posted 4/22/2011 2:41 PM (GMT 0)
I know how your daughter feels, I was diagnosed at 18, and I was severely anemic so I lost a lot of hair and I had almost bald spots. It has all grown back, but it was hard on me self conscious wise.
I took a hair supplement, I don't remember what was in it, and I also used a thin to thick shampoo and conditioner, that didn't help the hair grow back but it helped make it feel thicker.

I hope you are able to find something your daughter can tolerate. Does she like sushi roles? Seaweed is good for hair growth I was told :p
Posted 4/22/2011 2:48 PM (GMT 0)
Thank you so much for your advice.
Posted 4/23/2011 4:25 AM (GMT 0)
It's best to stay at 800 mcg or under in the amount of folic acid taken daily. Too much folic acid CAN be toxic.

Here's a couple things to consider:

- Checking out the other things in the supplement. It is possible your daughter has a problem with some other ingredient in the supplement. Perhaps another brand might help? 

- Starting with a low dose of folic acid - 400 mcg or less. Can she tolerate lower doses?

Posted 4/23/2011 5:07 AM (GMT 0)
She has 400 mcgs in her multivitamin and I was giving her an extra 400 mcgs. She tolerates it fine in her Multivitamin but when I added in the 400 mcgs of straight Folic Acid she got extreme stomach cramps. I have been recommended Biotin by several people at the rate of 500 mcgs daily. The brand I bought was Sundown. Her doctor had stated that the Folic Acid may weaken or interact with her 6mp (Purinthol) so I am not sure what was happening. I may try her one more time on it to see what happens and then if that doesn't work I will start her on Biotin.

Do you have information on the Biotin? Some people have told me that they noticed it helped them some.

Thanks.
Posted 4/23/2011 3:18 PM (GMT 0)
I have the sissiest gut around and my GI told me that Folic Acid is one of the easiest supplements to digest. I had started Biotin and Folic acid together but got bad cramps too. I assumed it was the folic acid and stopped them both. But now I only take folic acid and have no issues with it. I hope the Biotin works for her. I also bought shampoo to stop hair shedding and also used some stuff I bought at a hair supply store that was supposed to help. Between the shampoos, the liquids I left in my hair and the folic acid it slowed the hair shedding way down. Now I only use the folic acid. It did take awhile to work, but they all worked great. Hugs!
Posted 4/23/2011 7:26 PM (GMT 0)
The following info from the Linus Pauling Institute is the best I've seen for biotin: http://lpi.oregonstate.edu/infocenter/vitamins/biotin/

It seems that biotin has not been well studied, so we don't really know how much should be taken, daily, or what the upper tolerable limit is.  The US government says about 30 mcg/day should be enough, but the truth is, not enough studies have been done. It seems that very high doses, far above 500, have been used in clinical trials of diabetic patients, because of its effect on how the body handles glucose.

The Institute says, "Although hair loss is a symptom of severe biotin deficiency, there are no published scientific studies that support the claim that high-dose biotin supplements are effective in preventing or treating hair loss in men or women."

Post Edited (njmom) : 4/24/2011 12:36:57 AM (GMT-6)

Posted 10/30/2014 12:20 AM (GMT 0)
I've recently been diagnosed with refractory celiac disease and have been put on 6mp. I am also on weekly intravenous iron infusions. I have terribly thin hair to begin with and an worried about hair loss. Does anyone know how bad the hair loss gets? This recent change in my diagnosis has caused significant stress on me and I'm just overwhelmed with anything. Any advice would be great. Thank you, Sadie.
Posted 10/30/2014 2:05 PM (GMT 0)
I think the meds affect everyone differently, but when I was most recently put on Imuran (it metabolizes into 6mp in the body) I decided from the get-go I would take folic acid to minimize hair loss. I've been on the meds for 3 months and taking 800mcg of folic acid 4x's a day and so far no hair loss.

I read above that those other women had problems with cramping and nausea, but to be honest, I haven't had ANY problems with the folic acid at all. If you're worried, you can take it with food or a glass of milk. I buy the cheap stuff at Walmart and it's only about $3-4 for a bottle of 200.

I know people say biotin works, but I honestly don't think it does much. 6mp is a folate inhibitor and so scientifically speaking I'd say your best best is to just replace/supplement the folic acid your body would be losing. Good luck! I hope your hair doesn't fall out!

Stef
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