Has anyone been on Infleximab (Remicade) for Sarcoid

• By ilovethebluz
• Posted August 24, 2008 at 8:19 pm

Do a search on this subject. It has been discussed here and I found some good responses to that question.

Sabrina

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• By mastercommand
• Posted August 24, 2008 at 11:23 pm

Hello:

Yes we have. This did not work for me. After one year we have shown a new nodule with the previous examination. How much fun the 4hr drip.

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• By jubilee
• Posted August 25, 2008 at 8:31 am

thanks I have done a search and now see that a few people have or are currently getting remicade infusions with various results. I am remaining positive on this one as a week after the first treatment I am feeling pretty good.

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• By stopsarcoid
• Posted August 25, 2008 at 10:11 am

My husband just had his first Remicade infusion on Aug. 22. We are hopeful it will work. He has had sarc for 3 years and it's getting progressively worse. Will let you know how it goes over time. The nurse said Remicade is a "miracle drug." She also said that if he didn't feel better in the first two weeks, he would feel better after the second infusion. Keep in touch with us.

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• By micheleb
• Posted August 26, 2008 at 2:04 pm

I have been on it since Feb. I am doing much better now. At first, the infusion would make me feel better but only for a week or so and the more infusions I have, the longer and better they work. Remicade has by far given me the best results but it has taken sometime for the treatments to build up in my system! My doc told me I needed to give it at least year before I decided how effective it is.

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• By lwkmd1
• Posted August 27, 2008 at 5:32 am

No studies.. that showed any efficacy...only case reports,.. and the best results where in people with disfiguring cutaneous sarcoid(lupus pernio)

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• By becci
• Posted August 27, 2008 at 1:18 pm

I am remicade i have had 2 infusions it has made no differents to me infact my ESR has gone up and my joints are worse i have sarcoid for 34yrs keep smiling

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• By micheleb
• Posted August 27, 2008 at 1:25 pm

It does take some time for the remicade to work. I have been on it now since Feb and each month gets better and better.

It has worked MUCH better than prednisone or any of the other drugs and I have only minor side effects like some nausea the day of the infusion. I was on humira for over a year before the remicade and I have yet to get any sort of infection.

Studies, case reports, I really don't care-I go by how much it has improved my quality of life.

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• By valkman
• Posted September 7, 2008 at 2:11 am

I've been on Remicade since December 2007. I initially started with them every 30 days, but now it's every 6 weeks. It has helped dramatically with the joint pain. No side effects either. I take 650 mg's of Tylenol and 25 mg's of Benadryl 60 minutes before each infusion.

valkman

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• By IrishPerez
• Posted September 7, 2008 at 7:04 am

My husband was on it for a few months and it worked great for him. After the infusions, he had a stomachache and felt a little under the weather but after that, his pain was gone and the lumps started to surrender. He was taken off of it and it all came rushing back worse than the first time. They put him back on it again and he is starting to show some positive results. He is like you and has taken every other thing under the sun for Sarc but this is the only thing that has really started working. If you don't like the 4 hour drips, then you can ask about the daily injections. You have to do them yourself though and my husabnd HATES needles (which is logical because he has over 20 tattoos!). We just go for the drips.
Good Luck!!

Irish

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• By Valrena
• Posted September 7, 2008 at 12:03 pm

I have been on Remicade for about a year and a half and it has helped me a great deal. I have not had as many flare ups as I did before getting the Remicade. I use to get flare ups of uvites almost every other week but now I get them rarely.

I like the fact that I have not had any side effects to the treatment. Hopefully you will have positive results from treatment as well. All you can do is try it. Good luck!!

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• By PurpleSnowflake
• Posted September 7, 2008 at 11:52 pm

I took Remicade one infusion I did not know that I had inflammation around my heart the begining cursor of Cardiac Sarcoid the infusion almost killed me. I went to a specialist at the Cleveland Clinic after the Remicade Infusion was done by my rheaumatologist in my hometown. The Specialist in Cleveland said I was lucky to be alive stared having terrible palpatations of the heart and very low blood pressure also had 4 infections in 3 weeks. So be careful but good luck if it works don't mean to bring you down just pay attention to your body after your infusion. God Bless You I will pray for you also.

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• By justgr8
• Posted September 8, 2008 at 9:37 am

Greetings, I have had 7 infusions to date. The good thing so far I have been able to reduce my prednisone. After 16 years of high doses of pred. I have to get off it. I am now at 4mg. Gary

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