Remicade #3

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MaryFran

Posted Sunday, November 15, 2009 1:48 PM

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I had my third Remicade on Friday and, quite frankly, expected to feel much better by today. I just took a Vicodin. My knees, feet and hands are as sore as ever. I know others on the board are also on Remicade and wonder if you could tell me how soon I might feel some relief. I hate popping pain pills and it really is not very practical to do during the work week so I'm hoping things will improve quickly. Thanks for your help.

[font=Comic Sans MS] [size=2] Mary H.

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Gramma Ellie

Posted Sunday, November 15, 2009 2:01 PM

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Hi Mary,

I've been on Remicade since January, and while I found an immediate burst of energy, and a lot less stiffness, my pain actually increased slightly. I'm so used to being in pain by now, that quite frankly I don't notice, but my husband commented on my increased "ooches and oofs." I think the pain has settled down now, but it's hard to tell because I'm fighting this thing with my leg muscles.

I also take mtx and cymbalta, but I'm starting to wean down on the Cymbalta. It was great for pain when I started, but it doesn't do so much now, and I'd like to have my brain back. Tongue

Wait until your first 8 week dose and see how you feel. After 7 months, my rheumy raised my dosage to 4 vials, and shortened my interval to 7 weeks, but we might have to adjust it again. He would rather raise the dose than shorten the interval any further. It's a trial and error thing, and each person reacts differently. I've had infusions that started to work within a day or two and kept on giving me relief for 7 weeks, and other months, I've had a poor result.

I'll pray that this works well for you, but if you feel it isn't helping, don't hesitate to speak up and get the dosage adjusted.

Hugs,
Gramma Ellie

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Grandpavan

Posted Sunday, November 15, 2009 11:52 PM

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I saw a little help with 3 mg/kg but we had to increase to 6 mg/kg and space at 6 weeks before I really got relief. Then I was able to get off Prednisone easily when the medications were right. I think it took me about 6 months from starting Remicade to getting off Prednisone. Since then I have been able to go back to 3 mg/kg and increase the space to 10 weeks. It seems that for me at least it had to build up in my system before finally doing what I wanted. I hope you get what you want from it also. God bless.

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter. Doing well on Methotrexate and Remicade.

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MaryFran

Posted Monday, November 16, 2009 1:39 PM

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Thanks Gramma and Grandpa - boy I love you two! You are both always so supportive and have such a wealth of experience to share with us! I just called my rheumy's team leader RN and told her I'm hurting way too much for my comfort level. She'll talk with my doc and get back to me to let me know what he wants to suggest. Meanwhile I took another Vicodin. I just really hate to increase the Medrol any because my skin is so thin already and I just want to get off the stuff! I'll let you know what they come up with. This disease is a frustrating monster!

[font=Comic Sans MS] [size=2] Mary H.

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Margie Calder

Posted Tuesday, November 17, 2009 10:52 PM

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I'm new to this forum, but was really interested in your response to the 3rd Remicade Infusion, as well as the comments by others. I too just began infusions, and just had my 3rd on November 4th. After my 1st infusion, I actually felt worse (more swollen and achy) for about 3 days and then began to feel much better. That lasted only a week, and the pain returned much life before I started. The 2nd infusion two weeks later produced the same initial results - worse at first-then better. The better, however, lasted a GLORIOUS 3 weeks. (I almost felt "normal" again). I was anticipating good results from the 3rd - however that has yet to come. I went through the first few days of it being worse (just like before) - kept waiting for the better, but it never came. Finally after about 10 days of continually feeling worse I decided maybe this was a "flare" and upped my Prednisone from 10mg to 20mg (which is what my Rhummy's RN told me to do). It took 4 days at the increased dosage before I started to feel better. Now that the pain is more under control I'm working on backing it back down to the 10mg. I'm having trouble figuring this all out - it's sooo hard when even talking with someone in the same boat the results are so different. I'll keep watching your posts to see how you are doing and how it compares with mine since we are in about the same place at the same time. The Remicade and Prednisone are all that I am on now. My liver results are out of whack so the doctor won't put me on Methotrexate until we find out what is causing them to be elevated. Best of luck to you!
Margie

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mindyt

Posted Friday, November 20, 2009 2:16 PM

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I (also) just had my third infusion this week. I have yet to see any improvement. I just left a message with the dr about my hands--swollen, painful.. So far, remicade has not helped! I am still really hopeful that it will help. Did anyone see benefits by the third infusion?

Best Wishes,

Mindyt

Kind words can be short and easy to speak, but their echos are truly endless." Mother Teresa[/size]

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Malena Andersson

Posted Friday, November 20, 2009 5:12 PM

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I don't know if we have the same rules for Remicade in our countries? But, when I got Remicade I also took MTX. I had my infusions every 4 week. We started out with infusions every 8 week but it din't helped as much as it should. So, the doctor tryed with every 6 week and then every 4 week. Here in Sweden we can't get it more often than that.

I really hope that you will start feeling better soon!!!

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Grandpavan

Posted Friday, November 20, 2009 5:38 PM

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I started Remicade about 6 months after I got RA and I was taking 15 mg Prednisone daily. I had been on Methotrexate and continued with that along with the Remicade. After the third infusion I could get down to 10 mg Prednisone but no lower. Finally after the 6th infusion some 9 months after starting I was able to wean off for a short time before the 7th infusion but had to add Prednisone again a few days before the infusion. After that I weaned off the Prednisone and only take it since then on rare occasions. I'm glad I stuck with it because I think it works well for me now. God bless.

Age 82, diagnosed RA 12/2001, married since 1952, 4 sons no daughters, 4 grandsons 1 granddaughter. Doing well on Methotrexate and Remicade.

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MaryFran

Posted Friday, November 20, 2009 5:56 PM

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Well, maybe I have less patience than Grandpavan! As you will see from my new thread, I and my doc are throwing in the towel on Remicade and switching to Orencia. I just feel like I have to get better control of my RA before it really starts ruining my joints. I was on Medrol and Plaquenil for about 15 months before we did another blood test and x-rays because I was feeling too much pain. The x-rays did not show significant deterioration of my hands and feet, but the blood tests showed that the CCP was still greater than 250 and the doc decided it was time to take a more aggressive approach. With other medical issues I'd been having, he had been reluctant to get into some of the other medications until we had a bit more of an idea about all that. I can actually see the change in my thumb-to-wrist joints and do not like what I see. My feet are continually sore, as are my knees. I get shooting pains throughout various parts of my body. It's time for more aggressive treatment and I'll hope I have a better outcome with Orencia. I'll keep you posted! Meanwhile, I'm going to increase Medrol to 8 mg and see how that works until I can get in for the Orencia.

[font=Comic Sans MS] [size=2] Mary H.

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Margie Calder

Posted Saturday, November 21, 2009 12:48 PM

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Last Login: Saturday, November 28, 2009 11:40 PM
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I wrote earlier that after the 3rd Infusion I felt so much worse for a week afterwards that I increased my Prednisone from 10 to 20 mg. I am happy to say that I am now feeling much better and back down to the original 10 mg of the Pred. I don't know if the painful results after the 3rd infusion were a result of the infusion itself or an RA Flare. I am too new to all of this to know exactly what's really going on. However, I am very thankful to be feeling so much better. I can type this reply without pain! I can still see slight swelling between all of my nuckles (that seems to never go away), but the pain is minimal. Hoping this will last until my next Infusion in 5 weeks. Everyone I have talked to has told me you have to be patient with meds and give them time to work. That can be hard at times, I know, but I am really trying to do that and at the same time do everything I can - diet and exercise wise - to keep myself healthy and with a positive attitute. Wishing you the best.
Margie

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