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New to the site/problem with remicade.

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Posted 9/6/2007 3:17 PM (GMT -8)
Hey all,

My doctor just gave me the link for this page, and he thinks that talking with others will help.  I was diagnosed with CD and UC in March of this year, and spend 8 days shortly after in the hospital to control a flareup. 

I am just about to taper off the predisone being on 60mg was no fun at all.  I'm currently on Asacol, 1600 mg a day.  Oh yeah and how could I forget Remicade, just had my first eight week infusion.

I've never had a problem with Remicade, until this first infusion.  My hair started to fall out.  I've been dealing with thinning hair for some time, but to have it fall out is a complete and different story.  Not only is it embarrassing, but it's a reminder other than when the EOB comes in and it lists that I'm going through "chemotherapy".

I'm happy that the flareups have settled down, but the explosiveness of the disease exists at times, it doesn't matter at which end.

Psychologically, the past week was been extremely rough and friends and family understand but they don't UNDERSTAND completely.

Thanks!

Posted 9/6/2007 3:29 PM (GMT -8)
I have not had any experience with remicade but many members of this board have. Welcome to the board you will find a lot of useful information from many experienced people here. Good luck
Posted 9/6/2007 3:33 PM (GMT -8)
welcome to HW, I had reactions with remicade but my hair falling out was not one of them. I know Asacol and Pentasa have that as a side effect and most Drs prescribe Folic acid (at least 1mg thats why it is a Rx rather than the OTC ones you can buy). Sorry I cannot help you but maybe others on here can
Posted 9/6/2007 3:55 PM (GMT -8)
Welcome to Healing Well, hoserfish! I am IMPRESSED that your doctor gave you a link to this page! That means he must have seen our forum and approves of what we are doing here. I am SORRY that you are dealing with the hair issue. It is a very personal one that is traumatic to those that have it happen.

I would FIRST suspect your long usage of Prednisone. Prednisone can cause hair loss in some people. I lost 50% of my hair volume on prednisone. The hair loss didn't start until about my third month on the medication. It regrew once I was off. The reason I know it was the prednisone was that was the only med I was taking at the time.

I would SECOND suspect your Asacol as the culprit. I am not sure that Folic Acid will help if it is from the Asacol. Are you taking Imuran or 6MP? Those interfer with Folic Acid and supplementing will usually help. In my years here there have only been 3-4 people here that have what seems to be hair loss due to Remicade - because they were not on any of the prednisone, mesalamine drugs or Imuran/6MP.

Also, ask [insist] your doctor to check your folate and B 12 blood levels. Vitamin deficiencies can cause hair loss and we peeps with CD are prone to malabsorption problems.

Because you are taking three meds that can cause hair loss, knowing which is the culprit might be difficult. How fast are you tapering off the prednisone? When will you be off of it? If it is a very slow taper, can you talk to your doctor about getting you off faster? Or ask your doctor about stopping the Asacol and see if the helps the situation. And finally, what did your doctor say was causing the hair loss? The reason I ask that is that my experience is not many doctors understand the traumatic impact hair loss has on a person and really don't want to believe that their meds are the culprit.

Good luck! Ask more questions. Vent your feelings. We are here to help.
Ides
Posted 9/6/2007 4:34 PM (GMT -8)
Hi & Welcome!

You will find wonderful support and understanding on the site -

I am new to Remicade (my 3rd treatment today) but I have not had any of the hair loss side effects. I have been on Asacol, Imuran and on/off prednisone for over 2 years without any major problems.

I hope you are able to find what is causing your hairloss and I am sure other members may have similiar experiences.

Good luck and again welcome!
Posted 9/6/2007 5:24 PM (GMT -8)
Ides,

The last time I came off prednisone, I came off way to quickly, and that caused a flareup. As of late it's been tapering down by 5 mg every two weeks. So without any problems I should be off of it by the end of October. I actually saw him today and he felt that any of the drugs could be the issue with the hair loss.

Do you know if the test for b12 or folate at a normal blood test, or is it something that you have to request? Initially, he told me that a one a day multivitamin should be sufficient.

Thanks!
Posted 9/6/2007 7:25 PM (GMT -8)
Hoserfish,
Folate and B12 blood tests can be requested by your doctor anytime. It is possible that when they were working you up to find a diagnosis, that these tests were already done in light of his statement to you. Perhaps a call to his nurse asking if you have ever had these tests would get you an answer.

Relief soon......
Posted 9/7/2007 3:52 AM (GMT -8)
Hi Hoserfish Welcome glad your with us The B12 can be done with your other blood work and just request he check it. My B12 was low and went on high dose of B12 vitamin and is still low but not to the point where it is effecting my blood count. My glucose is up because of the pred so lowering my sugar. The hair lost I had started before my abcs. surgery .My potassium and protien were down have you had weight lost? My hair is growing in again and I am on pred 10mgs and Remicade as well as Imurun .Hopefully your hair will stop falling out as your health improves. lol gail
Posted 9/7/2007 5:57 AM (GMT -8)
Hi, I have been on Remicade for over 2 years and don't have any problems . I also am on Imuran.
and I am inremission. I hope you have good luck with the Remicade.
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