Friday, June 01, 2012

Sunday, March 08, 2009 just me asks

Q: I really would like to know all I can about Remicade

While on Remicade what are the odds of improvement and side effects, and where is the best place to seek good information from real people that have used it. Not just the Pharmacy inserts and chemical properties. Just the Laymans versions!I Have been on MTX for a year. Use mobic prn ( I alternate it with Motrin)  and daily B12,Folic Acid, Ca+/D, vit C and Fish oil. Now adding Remicade. Also wonder how long to see some improvements? Will I gain weight on this or lose it? I am just nervous as to how is this new one going to affect me.

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Answers (2)
Lene Andersen, Health Guide
3/ 9/09 7:24pm

I haven't taken Remicade, so unfortunately, I can't help you with first-hand feedback. However, hopefully someone else will answer this question, as well. You can also try to write a SharePost about your situation - it may bring more attention to the question.

 

I did a quick Google search and found a user forum on Drugs.com where people who have used the medication rate it. This may be helpful to you. You can also check out the official Remicade site.

 

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3/10/09 10:48am

Hi "Just Me"!

It's difficult to say how any one person will react to Remicade.  Some people do awesome, and others not.  My background is different than yours, but I will tell you how I reacted.  Simply put: all of my pain and inflammation disappeared in the 10 days after the second infusion.  that lasted for about two months, which is what is supposed to happen.  It was amazing.

    But I had other difficulties with it.  I was, like you, very nervous, in fact terrified.  I was brand-newly diagnosed, and wasn't sure I was sick enough to use something that powerful.  Maybe I wasn't, because normally the Remicade is not really supposed to have the full effect until after the 3rd 'loading dose', and I only had two.  Plus I had a kind of itching sensation under the skin after even the first dose.  So the doctor gave me a lot of Benadryl before, during, and after the second dose to prevent that.  It didn't prevent it, though, just made me dopy.  His office is also 70 miles away, so it was very inconvenient for me to go and get the IVs.  So I switched to Enbrel, which has been great for me.  Not quite as effective, but without the problems.

     I almost wish I had gotten to know the doctor better first, because in the long run, I think it might have worked out, but i was very gun-shy, didn't like having the IV, and hadn't frankly suffered enough to know what I was going to feel like down the road...

     I did see people literally hobble into the IV room and walk out.  So - it's an amazing drug.  But like all of the biologics, it comes with risks.  You can work to minimize them by following all the direction, to watch for infection, don't get the Remicade if you have an open cut, go for treatment if you think you're getting a bacterial infection... etc.

     I would consider Remicade again if the Enbrel stops working for me.  I hope you are able to benefit from it's amazing effects, and that it works well for you. 

     Even the Enbrel has had some side effects.  One that bothered me at first was that my white blood count dropped.  And stays lower (those inflammatory factors like the neutrophils) while on it.  My red count used to slightly improve, not sure it still is.  My throat and sinuses sometimes seem a little more irritated.  But overall, I can FUNCTION, and time has helped me deal with the side effects that I do have.

     Best of luck!   (P.S.  I can't take ibuprofen any more, and my liver enzymes were high so I was not given methotrexate or the other DMARDS that may hurt the liver.)

Ellen

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By just me— Last Modified: 12/15/10, First Published: 03/08/09