Hi all, a little update on Remicade. I've gone from 300 cc's to 600 (which is the maximum for my weight), The infusions hve gone from 3hrs, plus prep., to a quick 1 hour of drip. I didn't notice any diff. the first couple of months, then into the 3rd & now 4th months most of my pain, stiffness, and swelling has gone 'away somewhere'??
The week before my treatment (Last Monday) As most of you have probably read, I still have burning pain in my left foot which is preventing me from exercising, walking the beach and golf. The Remicade seems to not be lasting the full 4 weeks(?) and the insurance will not allow me to have it more frequesntly! Ugh. I still take 20mgs of methotrexate with it, and 5 prednisone.
I have an appointment with the doc on the 27th. , to find out what to do? Must I add still another medication? I really hesitate to do that.
I wish you all well with your struggles with this disease in your lives, Lynda
I am really worried about your little foot. Please ask him about it...Please! 4 week intervals is the smallest interval you can do remicade. How close to the 4 weeks is it fading. I suggest giving it another cycle to see how long it lasts for you as you get further into the treatment. Do you have any problems with the MTX you do have room to move up that dose. You may have some residual inflammation in the foot that a cortisone injection might help. Get an x'ray to see if there is any damage that would be causing the problems as well. Hi Lynda, I still have some pain but it's damage pain. The pain from the active RA/PA is nearly gone. You may have something other than RA going on with your foot. Have you had xrays or has it been examined by an orthopod? We won't ever be pain free - you and I because of denial at the beginning stages of our disease. We missed that window of treatment opportunity and I think we're paying the price dearly now. I don't ever expect to be pain free. If they find nothing wrong with your foot and they think it's RA then you may have to resort to pain meds on a regular basis and there's absolutely nothing wrong with that. Hon, I golfed 9 holes today for the first time since 2001!!! I'm up and on the computer and getting ready to do laundry, thanks to a Vicodin at 7 a.m. and another at 2:00 p.m. for damage pain. I probably won't need another until sometime later in the night (PAD pain). I take 2 - 3 a day when I know I'm going to be super busy (I refuse to give in) and other days I don't need any pain meds. Between Remicade, MXT, Vicodin, and a knee replacement I'm living a normal life for the first time in 6 years. In actuality it's taken me 10 years (since diagnosis) to live a normal life. You may have achieved the max relief from Remicade and MXT- you do have some wiggle room with your MXT. Your doctor may or may not suggest a change of biologic but if your RA is controlled and blood levels normal then I'd really investigate fully the foot pain and go from there. Why mess with your meds if they're working? Keep us posted. PM me if you want to talk. Lindy Burning foot pain, a nerve? That is what Katie keeps saying the burning in my shoulder blades is.... a nerve. But I refuse to believe
I am happy to hear the Remicade seems to be doing its job. Like LinB said it might be damage pain you are feeling. And you can up the MTX. I hope not another med. I HOPE YOUR MEDS KICK IN QUICK FOR YOU SO YOU CAN EJOY YOURSELF THIS WEEKEND AT YOUR RETREAT SORRY TO HEAR YOUR FOOT STILL HURTS. HAVE A NICE WEEKEND
I'm sorry you're having pain but I am glad the remicade is working for you...I wished it lasted the whole 4 weeks. I take humira injections at home every 2 wks and I find that it seems to wear off close to the end of the 2nd wk. I wanted to say enjoy your retreat and give it another month and then gosh maybe you'll have to add another med. You're in my thoughts..... Hi all, thanks for your concern and replys. I mentioned an injection of cortisone and he said he didn't think it would help. He said for me to be patient and wait for the Remicade that the 'dang, dumb, annoying' (my words!!) RA was the cause of my foot problem....boy I hope he is right. I'm seeing him NEXT Thursday and if this is still bugging me he'll get a call this MONDAY!! I never suffer in silence! Be well friends, Lynda
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