remicade

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

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I broke out in hives when I tried remicade.

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Remicade saved my life. I get no side effects. Good luck, Gary

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I dont think i have side effects from Remicade.

David

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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

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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.

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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.

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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.

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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

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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

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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!!

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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.

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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

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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

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i just had my second infusion. i still have some chest discomfort but i have lymph nodes in my neck which seem to have gotten smaller. i am very tired today.
this sarc is hard to get a handle on. good luck to all who try remicade

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I was in a Remicade study for Sarcoid which did not respond to other therapies. I must say my body felt better than ever while I was on Remicade.
However, at age 43, nine months into taking Remicade I had an instant heart blockage. Even though Remicade was still in my system I had cardiac rythym issues that required a pace maker.
I am not and never have been a heavy person or smoker. Active etc. No good reason for heart blockage. My Hemo/oncologist Dr. was concerned for my organs due to the amounts of medications I was taking. Pred, Methetrexate and Remicade. One month after her concerns I nearly died, hospital for 3 weeks etc.
I would love to get back on Remicade the DRs won't allow it. Be sure you have no cardiac issues.

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uteitis,

We really need to talk. I'm 41 female, dxd sarc of chestnodes & armbone past April. Tried 40mg pred for most of 2009 w/not much improvement. Then waiting to start Azathioprine & not on meds for 6 wks...had bad episodes of tachycardia w/chest pain-wore 24hr monitor which showed even 146bpm while sleeping-so PCP says get your rheum doc to start sarc drug immediately as it is affecting your gland that controls heartrate. Well lets just add to mix episodes of "room inversion" (kinda like vertigo), blurred vision & then balance problems (couldn't walk w/out stumbling like being on boat). Those symptoms landed me in hosp from Dec 22 to Jan 9th! So docs put me on IV 280mg solumedrol (steroids) every 8hrs for 3 days (crazy high amounts), then reduced to IV 120mg/6hrs for couple days, then oral Pred 60mg (still on) also started Methotrexate 15mg/wkly & I had one Remicade infusion while in hosp & will have next one next Weds if insurance approves it & my infection is cleared up (had pelvic pain & urine test w/2 bacterias while in hosp).

So these are serious drugs, with serious risks & sideaffects. BUt I also need serious treatment & feel hopeful about it. But what you said about heart thing has me bit concerned. Wondering what you think or any insight you might have to share w/me regarding your situation. Don't want more problems.

Sorry you aren't able to continue Remicade. Bummer. How are you feeling now? - Jayne

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cakebaker & uteitis, what roads you've traveled--I hope you are making progress.

uteitis, is it possible that you had Cardiac Sarc that hadn't been diagnosed yet--hence the heart block, which is a course cardiac sarc often takes? Remicade is a treatment recommended in the literature for cardiac sarc but it won't take the place of a pacemaker if that's what's needed to get your heart in rhythm.

Good luck to both of you. Sharon

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RFischpera,

I came across this older post & just wanted to see if you were ever apprvd for Remicade. I just went through same struggle to get insurance to agree to pay & they finally DID (2nd appeal) (see my recent post "Insur. Won't Pay for Remicade"). Both my neurologist & myself submitted appeal info. I have copies of what I sent them for supportive data/research. I just found out yesterday they finally said YES! I hope you were apprvd. & had treatment & success. Please let me know.-Jayne

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do you take it alone or in combination therapy?

David

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Hi Jayneslnpain
Can you send me some verbal information from your appeal. I have been fighting the insurance company and I am getting so tired. I need the Remacid nothing is working MXT made me too sick Planquial did not work at all, and I still on predisone. Help me please

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