Remicade

[GregL]

remicade

Hi Everyone,

During my last flare, my doc strongly suggested that I start taking remicade. A high dose of prednisone (30mg/day) didn't seem to be cutting it anymore, and it was unclear whether or not imuran was doing anything useful. He started me on 2g/day of 5-ASA (salofalk here in Canada) and my symptoms have completely gone away. I'm in near remission now and have been able to taper my prednisone down to 5mg/day without any major problems -- I've been very lucky in that respect.

Anyway, during the few days that Remicade was being batted around as a treatment option, I did a bunch of research on the drug. From most of what I read, Remicade seemed to work very well for patients initially, but the effects diminished over time. Does this match your experience? Has anyone here been able to get a long-term remission from using remicade, or did it lose its effectiveness over time? If it did lose effectiveness, how long were you able to get a positive effect for? Did you find that your symptoms returned before the next infusion, and if so, what did you do to manage them?

My drug plan only covers 80% of the cost of remicade, so before I go and spend thousands on this drug in the future (and I hope I don't have to go down that route), I'm quite interested to know how well it works.

Thanks in advance for your responses and I'm sorry if this has been asked a thousand times already!

 

[fgillette1986]

While I was on remicade I felt very good and pretty much normal.

The way I was treated, my Doc would only do a few series of 4 infusions on me until I was feeling good and then take 6MP for maintenance. After about 6 months of no infusions, I would generally start to feel bad and see a flare up going on. At this point, my Doc would order another small series of infusions. It went like this from mid 2003 until just recently.

The problem that happend with me just recently is my immune system developed immunities to the drug and now it is no longer recommended that I continue infusions... If I did, I would most likely have allergic reactions everytime I try for an infusion.

Now that I can't take remicade, I am on entocort. On top of that, I have decided to change my diet dramatically. Basically, I have cut off caffeine and red meat. I have majorly reduced my intake of simple sugars. I avoid things that would be hard to digest... somewhat like a low residue diet. I have also incorporated a lot of anti-inflammatory and anti-oxidant foods into my diet.

Being on entocort, changing up my diet dramatically, and consuming probiotics has been working well for me. I can already see improvement... and much cheaper than Remicade.

 

[TammySue62]

Hi Greg
I too have been on REmicade for a few years now. It worked at first then my body got used to it. Ican only have remicade every 8 wks.because thats all ODSP will pay for. Im sure you no what that is, by being a Canadian.LOL It helps me for the first 4 wks. then i start to go down hill from there. It helps the drainage slow down from the fissures I have. But by the 6th wk I suffer alot in pain.If I could afford remicade i would get it every 4-6 weeks. I think like any drug we take,that it all depends on the person. Like some meds and diets work for me where as another person they wouldnt work the same. You just have to go by trial and error. Find out which meds and diets work best for you and your body. HOpe that answers your queestion?


TAMMY

 

[linds92]

remicade

I have had 5 remicade treatments so far and the first one seemed to help with the joint pain. Now it doesnt really help that much and my dose got doubled and that just gave me more of a headache. It always gives me headaches. I get a couple every day.

 

[Skinsfan1229]

The fact is everyones experience is different and you cant base your decison on our outcomes. its just not logical.

maybe you should up your prednisone before going on to remicade, 30mg isnt a lot...i've met people taking 100mg before, many taking 80, i've only bene up to 60mg, but everytime i flare basically and thats considered a high dose. not to mention I would think you can try other anti-inflammatories AND steriods before if you dont want to spend the money.

Honestly if Remicade IS going to work for you, you wont care how much it costs....if you have the same level of lifelessness then you wont mind at all.

 

[SoccerMom]

I have had 3 Remicade infusions done & take Entocort, I have "break through symptoms" after about 4 weeks. Even with that I feel much better now than I have in years My ins. covers the Remicade completley so that isn`t an issue for me ( thank goodness) I do have to drive about 2 hours to have it done though. I have been on pred. (IV & oral) & 6MP & Asa-5 & Colozal & Rowasa Enamas & Corti Foam & my tired mind cannot remember anymore... I like Remicade the best. Good luck to you!

 

[Hobbes]

I have been on Remicade for a few years...I started off getting it every 8 weeks, but now I am down to every 6 weeks, and I had my dose raised from 250mg, to 400mg...and even still that only takes me through about 5 weeks or so with little to no problems. The last week before an infusion can be pretty rough. I get my Remicade paid for by Trillium (whole seperate headache there) since I no longer have health insurance.