Remicade For Takayasu Arteritis

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Efie Says:


am writing to you on behalf of friend of mine who has Takayasu's Arteritis and her doctors have suggested to be treated with Remicade.
From a little search we made ( we are not doctors of course !) we did not find anything mentioning that Remicade is used for her condition which we were told is very rare ( maybe 2-3 persons in a million).
Can you please provide us with some information or guide us how to proceed or even where we can find more information about her condition.
I would be very much obliged to you if you can give us some answers because of the rarity of her condition ( i think she is the only one in our small island).From what i read the above medicine has many side effects and she is very much concerned about this.

Thanking you in advance




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Leslie Says:

Please feel assured that this is a standard treatment for TAK. I've been on it for five years and know of a good number of patients that are on it too. It is an 'off label' use of the med because it is difficult to do a proper randomized trial of a TAK med since there are so few of us.

Best, Leslie

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efie Says:

Dear Leslie, I am very grateful for your reply. My friend has had TAK for years but because is so rare she just found out what was happening to her just last year. We would very much appreciate any information you can give us about TAK because she is very reluctant to use Remicade. She is afraid of the side effects.

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Leslie Says:

I personally have had no side effects. The listed side effects, including lymphoma, are thankfully rare. I trust that her doctor is fully discussing all the treatment options and pros/cons with her. There is a Vasculitis Foundation group on Facebook, as well as several Takayasu's arteritis groups -- look for Takayasu's and Taka---WHAAAA???!!!! on the Facebook search bar. Those would be good resources for her to tap. Where is your friend treated?
Best, Leslie

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Efie Says:

Dear Leslie, Thank you for getting back to me . My friend is treated in our General hospital in Cyprus.(Cyprus is an island in the Mediterranean) She is 42 . Her doctor says that TAK is still "active" She wants to know if u take any other meds besides Remicade. Of course we do not know where are u from but if u know of any clinic or doctor in Englad since she is planning to go to England in a few days. Thank you so much. :)

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Leslie Says:

I am greated at the Boston University Medical Center Vasculitis Center, here in Boston, Massachusetts USA. I personally don't know of doctors in England. She can email my doctor Dr. Peter Merkel who is a lead researcher and has connections around the globe. He may have a recommendation. His email address is pmerkel (at) bu.edu. You are a wonderful friend to be helping her...God bless.

Best, Leslie

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Reshma Shrestha Says:

Thanks Leslie, for the information. I have read lots of your post in Takayasus Arteritis Messageboard.
My younger brother is also having TA and he is 14 yrs old. The disease was diagnosed 3 months before. I need to know more about TA. Please help me out.
Thanks

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Lavanya Says:

Hi, Please help me with the doctor or with the rite hospital to treat TAK in Bangalore, India as my younger Sister is only 16 and we have no idea on how to proceed

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sonny rivera Says:

this is so sad that there is no cure for takayasus my daughter has takayasus if any of you knows what will the best medication that will at least help her condition please share the information thank you

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