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Has anyone on 6MP NOT experienced hair-loss/thinning?

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*Phoebe*
Veteran Member
Joined : Sep 2005
Posts : 769
Posted 11/23/2010 4:25 PM (GMT -7)
Hi everyone, I hope you are all welll and happy and looking forward to Christmas!   Ok, so here’s the thing.   I’m on remicade; and have been since October of 2009. I have had a really good response to the drug, which I was granted access to because I have severe fistulising Crohn’s and because my condition wasn’t responding to other treatments. Also, I had an abscess which was not healing. Within a day of my first infusion, my abscess wound from surgery began to rapidly heal…   One year on, and remicade is still brilliant.   However, I was put onto 6MP as well as remicade, and I had heard such horror stories of hair loss from just about everyone who seemed to be on it (not to mention the risk of lymphoma and lack of long-term outcome studies for this drug), that I was too scared to take it. I know it sounds extremely vain and stupid, but with a year of hobbling along suffering from an abscess, I don’t know if I could handle any other humiliating side-effect such as hair loss. The one thing that really keeps me going through all of the extremely hard times is the fact that outwardly I appear fine, I have managed to maintain my full-time job even with an abscess and two surgeries etc. normality keeps me going.   What I’m asking is:   For those of you who are on 6MP – have any of you not experienced hair-loss as a side effect?   I have this constant worry at the back of my mind, that the 6MP, scary as it is, is there to prolong the remicade, and I am scared that remi might ‘wear off’ – and I will be to blame. I know it sounds irrational, but I am so petrified of the 6MP.   Your experiences re: side effects would be greatly appreciated…. I feel like a liar for not letting my specialist know I have not been taking this medication, but I respect him so much and so appreciate everything that he has done for me, and I kept thinking ‘one day I’ll be brave enough, suck it up and take it’… I have since found out he knows I have not been taking it, and so the guilt is even worse now!   Thanks so much,   P
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Aimee =)
Veteran Member
Joined : Jun 2004
Posts : 1020
Posted 11/23/2010 4:36 PM (GMT -7)
I've been on 6mp since my resection in February. I have not had any hair loss or, honestly, any side effects that I have noticed.

I DID have hair loss on Humira but it was never noticeable to other people; I evidently had hair to spare? That stopped after the Humira got out of my system.

I loved Remicade, used it for 2 years, but did not take 6mp alongside it and my body rejected it after 2 years by reacting to it (not pleasant). I'd really encourage you to give the 6mp a try. You may be like me and not have any reactions - and it may buy you additional time on Remicade. I'd hate for you to miss out on a very helpful drug simply over fear of a possible side effect.
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Kiwi12
Regular Member
Joined : Aug 2010
Posts : 486
Posted 11/23/2010 4:57 PM (GMT -7)
You will be pleased to hear that I took 6 mp for several years with no discernable side effects. Certainly no hair loss and I can honestly say it seemed to work for me :)
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NiceCupOfTea
Elite Member
Joined : Jan 2010
Posts : 11084
Posted 11/23/2010 4:58 PM (GMT -7)
Been on 6MP twice, and never lost a single extra hair that I was aware of. It's very far from an inevitable reaction. In fact people seem to talk more about Asacol causing hair loss than 6MP!

I don't think 6MP has anything to do with prolonging Remicade's life. They work according to different mechanisms, therefore I don't think they interact together. I thought the 6MP enhanced the effectiveness of Remicade simply by being another weapon to tone your body's immune system down with. I might be wrong on this, so please don't take it as read.

That said, I think you should talk to your specialist honestly about your fears...
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Zanne
Veteran Member
Joined : Apr 2005
Posts : 3763
Posted 11/23/2010 5:37 PM (GMT -7)
I have been on 6MP for over 12 years and have had no side effects other than the occasional odd liver level test. No nausea, no hair loss, no extra tiredness, nothing except it has kept me out of the hospital and more importantly, out of the operating room. Keep in mind that they have to list all POSSIBLE side effects, it doesn't mean they are all PROBABLE.
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RiddleMeThis
Regular Member
Joined : Nov 2010
Posts : 269
Posted 11/23/2010 5:52 PM (GMT -7)
Your story is kind of opposite of mine! I was on 6MP for a while, absolutely no problems. No hair loss or thinning. I also have severe fistualizing Crohn's, so I went on the Remicade. 5 months later and I was diagnosed with cancer.
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*Phoebe*
Veteran Member
Joined : Sep 2005
Posts : 769
Posted 11/23/2010 5:56 PM (GMT -7)
Oh RiddleMeThis, I'm so sorry to hear that. What kind of cancer is it? Do you think the 6MP could have any correlation to the cancer?
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RiddleMeThis
Regular Member
Joined : Nov 2010
Posts : 269
Posted 11/23/2010 6:09 PM (GMT -7)
Hi Phoebe! No worries, I've basically already beat the cancer :) It's thyroid cancer. Both Remicade and 6MP have grey areas in regards to cancer. I've had only one doctor say that 6MP might have some connection to the cancer and then I've been told by about 4 doctors that the immuno-suppresivity of the Remicade caused the cancer. Also had two doctors say that Remicade directly caused the cancer. Frankly, I find that more people are afraid of Remicade than 6MP.
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andorable
Veteran Member
Joined : Jun 2005
Posts : 981
Posted 11/23/2010 7:21 PM (GMT -7)
I haven't used 6mp but I have a sister that has UC and has been on 6mp for several years and never lost any hair from it. I am on methotrexate which is another one they say you can lose hair from but I've not lost anything more than normal. I also think that most of these drugs have lots of side affects that are not nice but it doesn't mean it will happen to every person that takes that drug, and finding what one suits you best, the only way you will ever know is to try it. Crohns/colitis has changed all of our lives in some way or another but to continue the fight we have to take the advice of our doc, especially when you trust them as much as you do, and I know your doc and surgeon personally and your right they are brilliant, doc clark has performed 4 surgeries on me in the past 18 months and he is amazing, 2 of those surgeries were major and all done laproscopically. All the best and hope you make the decision thats best for you. take care
Doreen
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nawlinscate
Veteran Member
Joined : Jan 2007
Posts : 656
Posted 11/23/2010 7:25 PM (GMT -7)
I've been on 50 mg daily of 6MP since early in 2004. I've had no discernible hair loss--and no other side effects except occasional nausea (which is more likely related to the disease than the drug).
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*Phoebe*
Veteran Member
Joined : Sep 2005
Posts : 769
Posted 11/23/2010 8:31 PM (GMT -7)
thanks so much for the replies everyone, sometimes I don't know what I'd do without this place. :)
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ZenaWP
Veteran Member
Joined : Aug 2007
Posts : 884
Posted 11/24/2010 7:48 AM (GMT -7)
I was on 6mp for a little over a year without any side effects other than we suspected it may be to blame for elevated liver enzymes.  Stopped it because it didn't seem to be helping any and liver enzymes did come back down.

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MikeB
Veteran Member
Joined : Mar 2006
Posts : 1169
Posted 11/24/2010 8:42 AM (GMT -7)
Been on 6mp for about ten years now and the only hair thinning/loss I can detect probably has to do with being ten years old, not the meds.

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karasmommy
Veteran Member
Joined : Mar 2005
Posts : 589
Posted 11/24/2010 8:45 AM (GMT -7)
I only noticed a loss of hair for the first 6-8 weeks - it wasn't noticeable by anyone. It wasn't a thinning or anything just felt like I was having a lot of hair coming out. After the 8 week period, it felt like my hair was back to normal.

Now when I started Methotrexate that has been a different story - I have actually had the texture of my hair change - it has gotten thicker and reacts differently to any hair color I put on - my hairdresser told me she sees a lot of people that take those type of drugs have hair changes (thickness, thinning, color change, etc).

I think everyone reacts differently to the meds.
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