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my pulmonologist wants me to see a reumy and start with remicade infusions. Does anyone here currently do this? What side effects have you had and does it seem to be effective? I have sarcoid in my lungs. So far I love and trust my pulmonologist...just don't know much about remicade. Thanks
I broke out in hives when I tried remicade.
Remicade saved my life. I get no side effects. Good luck, Gary
I dont think i have side effects from Remicade.
David
I saw significant improvements all around on my xrays and scans. My only side effect came about 36 hours later i was incredibly fatigued!!! My doc felt we were heading toward a possible cure and was weaning me down. My insurance was lost whenmy ex wanted a divorce and in the 8 months without I had a flare up.So now I'm on Humira and making progress but not as quickly as I did on Remicade (they are in the same drug family) and because the sarc is invading my joints we added MTX to "boost" the Humira. My 3 month scan did show improvement, but I'm having trouble adjusting to the MTX (methotrexate) as I've just been on it 10 days.
Good luck and God bless.
Mary
Had my second infusion Wed. Just side effects of fatigue for a few days after. The evening of the IV, I sort of feel fluish. But, nothing major/no biggie.
My Rhueme has saved a patient from a lung transplant because he did so well on Rem. I am hopeful this will be the same for me. Good luck.
Thanks justgr8, david2727, Gypsy and ellj for your responses. I am feeling better already. I have one more question though, how often do you have to have the infusions? My insurance still has to approve it and I will go Tuesday to talok with the doc about it. I have blue cross/blue shield so I am hoping it will be covered.
I've had mine every 4 weeks for two months and I can feel a difference. At first they had it every 8 and it didn't help. I have blue cross/ blue shield of illinois. It took a while for them to approve it but they eventually did. I also have Ulcerative colitus and they use remicade to treat this as well. My GI doc was the one that got the remicade approved so having UC probably helped. It is very expensive ($3600.00) but I only have a $20 co-pay.
my boyfriend has been on it since january and it has been heaven sent. He has finally been able to return to the gym and getting around as he used to. He no longer sleeps all day or complains of the fatigue. The first couple of months were slow progress but after about the 5/6 injection we really noticed a difference. He didn't have any side affects but heck after that prednisone..what side affects could be any worst..LOL
I also get it very month, first was every 8 weeks, then every 5 weeks and now every month. The more often you get it, the better it works but there's a limit to what your body can get. I saw the effect right away on my skin but it took 3 months to fully kick in.
Some people are very tired the day after the infusion.
David
Thanks so much to all of you for the comments. I'm so excited and hope it gets approved fast so I can start to feel better!!
The rheumatologist I was seeing tried to get me on remicade. He ran into a brick wall with the insurance company. They felt that the use of this for sarcoid was unfounded and to expensive to approve. Does anyone have documentation that could help me getting on this. I have tried so many drugs one more could not hurt.
I had to bring in a big file that mentioned all the treatments i tried, that i had severe progressive sarcoidosis resistant to treatments with prednisone and methotrexate and some other immuno supressor i forgot. And also that my sarcoidosis treatent vital parts; my eyes, kidneys and brain (i had facial paralysis). Other vital parts are the lungs, liver etc...
Dispite this I didnt got approved by the insurance but got on a test programm in the hospital and now I'm on compassionate use. I'm sueing my insucrance for the first year i had to pay for remicade myself. Many others do get approved by the insurance with such a medical record tough.
David
Well I to have had sarc in the lungs and still do but not enouph to worry about. But I have been on Rhemicade for about 7-8 years now and I love it. I haven't had any side affects but everyone reacts differently. The pain is virtually gone now and I've been living like a normal person!! Lol its helped my eyes a lot to! As far as the inflimation. But at the moment I am fghting my insurance about it to! I just switched from tricare to blue cross blue shield because of my age. And they aren't trying to pay! But im appealing it and should hear from them soon! I hate insurance companies sometimes! Its rediculouse! But anyway the medication works great! Def give it a shot! Good Luck!
Ryan
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.
You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.
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