not many on 6mp is it too soon,what could we do instead? is the hair loss usually heavy/

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jayce
Regular Member


Date Joined Nov 2007
Total Posts : 382
   Posted 1/18/2008 3:40 PM (GMT -7)   
l know everyone responds differerently, but is the hair loss from 6mp noticeaable, does it happen early in treatment? does it grow back while still on treatment or only when off it. do you ever go off. wasn't ready for this one and have been at work so i haven't had chance to really research i will now. but personal experience from real people is helpful-thanks for your answers. that's a long time to see response?
Mom to 19 year old daughter diagnosed 11/07.
asacol 2 3x daily-discontinued
colazal 3 3x daily/switched to 4 4x daily
proctofoam 3x daily/1-2xdaily
mesalamine enema 1x daily
canasa suppostiories 3x daily /switched to court supp 1-2x daily
culturelle probiotic 1 daily/switched to danon activiea?
chewable vitamin
hydrocortisone enema at bed time


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23549
   Posted 1/18/2008 3:51 PM (GMT -7)   
My hair loss was mild and stopped after my body became accustomed to the med. And yes, my hair grew back. I have thick hair anyway so it wasn't that noticable and actually I liked the thinner hair because for once it was managable :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc -'92 - Colazal (9 daily), 6mp (50-100mgs), Colocort, Prilosec, Biotin, Forvia, Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa** ~Allergies - Allegra & Singulair
~Secondary Reynauds Syndrome - '04 - Norvasc~Fibromyalgia - '06~No meds
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jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 1/18/2008 7:36 PM (GMT -7)   
Not everyone gets hair loss with Azathioprine and 6MP, PLEASE. The loss is most often fairly light and easily hidden by styling. And yes, it comes back when the medication is discontinued. I've never seen anyone go bald or anywhere near on 6MP alone, even back when we used significantly higher doses for children with cancer.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
In remission since April, 2006. Remicade has been my wonder drug.
 


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 1/18/2008 7:44 PM (GMT -7)   
I had hair loss from imuran at about month 5 1/2. It was alot....when I would take a shower, I would be standing in ankle deep water by the end because of all the hair plugging up the drain. This continued for about 3 weeks, and then stopped and it all grew back. I have a lot of hair so it wasn't noticeable to anybody but me.

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 1/18/2008 9:05 PM (GMT -7)   

Please, I am sorry your daughter is still flaring. As a mother of a child with UC, I know how hard it is not to be able to make it all better. My daughter started 6-mp recently. She was in a flare, the prednisone wasn't working and the doctor was getting concerned. He talked about taking remicade in addition while the 6-mp needed the few months to kick in. We have held off on remicade and whether it was the prednisone that finally began working or something else, she started to see a positive change almost as soon as she started the 6-mp, lowered her asacol, and stopped the enemas (the asacol and enemas had worked great for many months).  My daughter hasn't seen any more hairloss than normal although she has very thick hair so it may be less noticeable. Also she was on steroids for several months.

I hope your daughter is feeling well soon.


--Mom of bratcat (16 years old)--
bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 3 pills/3Xday, 5 mg prednisone, 2 tabs 6-mp
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone.


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 1/19/2008 1:31 AM (GMT -7)   
I've not noticed any unusual hairloss on 6MP and I've been on it for nearly 2 years. I have THE WORST hair already and I'm the first to start noticing if my hair is falling out. I shed a lot but it's not any worse with 6MP.

PLEASE, I've been thinking about your daughter and wondering whether I have any decent suggestions for you since I know you are really worried and she is not improving quickly.

Here are some random ideas:

* The long-term side effects of 6MP really do not seem that serious to me. This is a personal opinion.

* 6MP can take MONTHS to start working. I was one of the few who took longer than 6 months. (8)

* If your daughter just has to get through until the end of the semester when she can relax in the summer and really heal up, perhaps you should consider asking about Prednisone. I'm not a fan of it, but for the short-term and to get through a crisis, it can be great. Four months until May is not that long. She can taper off in May and maybe by the then 6MP would be working. Or she could find a good alternate treatment over the summer months.

* Maybe she is like some of us who never respond to the 5ASA drugs. All that asacol, colazal and canasa could actually be the problem. Just a thought.

* Last, her doctor might want to treat her symptoms for now. That is, try to slow down her gut so that she can sleep through the night. Lomotil is a nice mild med in a tiny pill that stops the spasms that cause you to run to the bathroom. Helps me eat without fear. Xanax does that too for me. I also take Codeine because it has the great side effect of constipation. When I am desperate to stop running to the bathroom, this is great. Certainly with a young person, you would have to be careful about something like that since it's a narcotic.

I hope some of this is helpful. It's such a struggle to find what works. But I think we all find some things eventually.
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.


jayce
Regular Member


Date Joined Nov 2007
Total Posts : 382
   Posted 1/19/2008 6:03 AM (GMT -7)   
julee, you are right about everything u suggest-i'm thinking the same-i agave her low dose valium the last 2 nights even though the dr said no, and she only got up 2x instead of 5 or more, after the endo/colono scheduled for thursday and new blood work dr will decide if should take pred-she was absorbing more than most just through the rectal meds and it was screwing w/ her bloods. i want to see her feeling normal, and the eye problem is also new, she wants to go back to school-very supportive loving friends for 19-20 yr ols, and she wants to go to the formals and does not want the pred weight- i know this sound sounds trite, and she will do what she has to to stop bleeding- and i think you are right about the asa'a maybe just not working for her maybe even causing more d and blood-
. my question to you is have you gone into remisssion yet on the 6mp-w/or without pred. -thanks to all

mom of bratcat i your daughter in remmission?
Mom to 19 year old daughter diagnosed 11/07.
asacol 2 3x daily-discontinued
colazal 3 3x daily/switched to 4 4x daily
proctofoam 3x daily/1-2xdaily
mesalamine enema 1x daily
canasa suppostiories 3x daily /switched to court supp 1-2x daily
culturelle probiotic 1 daily/switched to danon activiea?
chewable vitamin
hydrocortisone enema at bed time

Post Edited (PLEASE) : 1/19/2008 6:23:17 AM (GMT-7)


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 1/19/2008 11:22 AM (GMT -7)   
Hi. I think the doctor was wrong in telling you to stay away from valium. In the days before all these meds, that's how many people would deal with stomach ailments. Far less dangerous that all these steroids for sure! And it worked. Great.

about remission: YES. It took about 8 months for me to get to remission with 6MP. I took Pred at the same time because I was REALLY sick. After about 4 months, I just tapered off the Pred even though i wasn't in perfect shape. I thought that it was enough Pred and that I would just wait for the 6MP to work. It was very difficult not knowing whether the 6MP was ever going to kick in.

Recently, I've had about 8 absolutely perfect months on 6MP. Perfect! And then the stresses of life started causing me to have some minor symptoms for the last 4 months. I'd say that even though I'm starting to have some mucus and a little bit of D, I don't think I will ever flare again as badly now that I'm on the 6MP. The flares are minor and more controllable with Cortifoam and Codeine -- my special combo. I spent an entire year "on the road" traveling and just had to get my blood checked along the way to make sure the 6MP wasn't hurting my liver.

I'm not sure that everyone gains a lot of weight on Pred. For me, it was helpful because I'd gotten too thin!

Some people here mention starting on doses as high as 60 mg. Just for reference, my doctors have always started me at 40 mg. After a couple days I feel like Superwoman.
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.

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