How long does/ did it take Remicade to work for you?

Has anyone had it NOT work?

A little background: I have had Psoraisis since I was 15 and started topical treatment when I was 18 and it started to get bad. Topicals helped A LOT, and I just went to my derm for refills. Fast forward to last year, and the psoriasis got nasty. So back to my beloved derm and on Humira I went! It was great; I got into a clinical trial, so the copay for the meds and derm follow-up were covered, and even better, the psoriasis went away! Absolutely, gone, and this was nothing short of a miracle for me. (Pretty fingernails and toenails! Finally!). In June of 2012, I had my first PsA flare which was about 3 weeks long, and inexplicably went away.

THEN, came the flare from the “Dark Side” which appeared in September. Symptoms were much worse than the first flare, so I saw a rheumatologist who put me on prednisone, and ordered Remicade infusions. I was able to start Remicade in late Nov, early Dec. I have had my first 3 loading doses and have 4 more weeks until my first “real” dose. The only improvements I have noticed is that the sausage fingers and toes are gone, and the pain is somewhat less but not at what I would call tolerable. I have lots of trouble getting up in the morning related to aches and pains, and also feel pretty fatigued most of the time. I also have lots of lovely, knots and gnarls on my PIP joints on both hands. These little suckers hurt! (these returned once I had to D/C prednisone to to an allergy. Seriously?)

So, when will it work? What are your experiences? I am getting a little edgy with the pain and funny growths everywhere, and anxiously tapping the foot that works, while driving myself a little batty, waiting on Remicade to work!

My first initial doses did not work. My rheumy had to increase the dosage& frequency. I am feeling better every where now EXCEPT for my hands/wrists. I do not know if that is due to my wrists fusing & causing horrible carpal tunnel or what it is. I see my rheumy again in March. I know my doctor said the step is for severe cases. I will cross that bridge if & when it comes to it. According to my doctor it could take up to 3 months to get into your system & you feel the effects. Try to be patient, I know that is almost impossible when you are hurting. Don't hesitate to call your doctor with questions. Keep us posted. Best of luck to you.

Liz,

How long have you been on Remicade?



I met with my rheum and started Remicade just before she went on maternity leave. In the tumult of that visit, I never asked how long it would take. When I finally got one of her partners to see me (due to the prednisone reaction) he scared the bejesus out of me when I asked him the question. He told me that it could be 6 months, and that there will never be a day that I don’t wake up and think of my PsA first. The first part concerned me but the second terrified me. This was about 2 weeks ago and I am slowly adjusting to this startling information.

It was such a shock, because when I took Humira, I noticed results the first week in the form of shedding all of my Ps plaques.

Do you know of anyone who has NOT been able to do well on Remicade on its own?
Also, are you willing to describe the pain you have in your hands and wrists?






Liz said:

My first initial doses did not work. My rheumy had to increase the dosage& frequency. I am feeling better every where now EXCEPT for my hands/wrists. I do not know if that is due to my wrists fusing & causing horrible carpal tunnel or what it is. I see my rheumy again in March. I know my doctor said the step is for severe cases. I will cross that bridge if & when it comes to it. According to my doctor it could take up to 3 months to get into your system & you feel the effects. Try to be patient, I know that is almost impossible when you are hurting. Don’t hesitate to call your doctor with questions. Keep us posted. Best of luck to you.

Remicade is one of those drugs, the longer you take it, the more you feel... I didn't feel any difference in the 1st probably 4-5 infusions. They compound over time, at least that is what I'm told and can testify to the fact I am now a completely different person. Hang in there!!! It will get better, it just takes time! :)

Right on remicadebeliever!

Thanks for the encouragement… I’m moving from Humira to Remicade in a couple of weeks myself and that’s great to hear! Hope you’re feelin’ better soon GrumpyCat!

I have had my first two Remicade doses and will receive my third on January 22. It has not worked yet and I have been in pain in more places than ever. The fatigue and pain are bad, but I have dragged myself to work because I have already missed so many days because of medical appointments. I have pain now in my knees which have never,ever bothered me before. Wow, that has been life changing as I didn’t realize before how many ways knees are important throughout the day. My rheumy has already said that she will be upping the dose as soon as she can, but in the meantime I am in constant pain.

One thing that has helped is a heated mattress pad on my bed. Sleep is restorative even though with arthritis each day is difficult to start. However, not all nights are the same and while the heat helps with the pain, sometimes my mind won’t cooperate and let me sleep - like tonight when it is midnight and I am still awake.

Posted twice -edit

Oh, I feel your pain! Literally, I have a lot of the same pain. Even my knees have started acting up and my neck. It sucks, but I am glad that I am not crazy. I just want to be on a therapeutic dose of this medication, so that I can return to at least partially normal. I am still hoping that I will be able to do that!

I love heat too. My mom is coming today to stay for a week and help us out, and she is going to make some microwave heating pads for me while she is here.

I also have a lot of insomnia. I’ll stay up all night for no reason, just like I did on Friday night. Then I had to make myself stay up all day so that I could get back onto my normal schedule.
Thanks for sharing with me and helping me feel like I’m not a whack-a-doo!



Mlearning said:
I have had my first two Remicade doses and will receive my third on January 22. It has not worked yet and I have been in pain in more places than ever. The fatigue and pain are bad, but I have dragged myself to work because I have already missed so many days because of medical appointments. I have pain now in my knees which have never,ever bothered me before. Wow, that has been life changing as I didn't realize before how many ways knees are important throughout the day. My rheumy has already said that she will be upping the dose as soon as she can, but in the meantime I am in constant pain.

One thing that has helped is a heated mattress pad on my bed. Sleep is restorative even though with arthritis each day is difficult to start. However, not all nights are the same and while the heat helps with the pain, sometimes my mind won't cooperate and let me sleep - like tonight when it is midnight and I am still awake.

I appreciate the support, guys! Sometimes I wake up and look at my list of symptoms for the morning, and think, “This can’t be right!”. How does one disease process affect so much? And right now, because its not well managed, I feel like its owning me. This leads to the “what-if” thoughts, and then panic, and then tears and snot and self-pity, and other whining. I just need a break, a day off from it.

It is so helpful to read through other posts, and know that other people have the same whacky symptoms that I do.

Let me just say that I've been on Remicade for over a yr.. about a yr and a half.. when I started I couldn't walk up and down my stairs.. I would have to sit on my rear to go up and down them. I couldn't stand very long and had to use a wheel chair at walmart when I went shopping.. NOW.. I can RUN up and down my stairs.. I work out (p90x.. Don't tell my dr! hehehe) I can jog a little, but walk any where and everywhere I want, hike, etc... I am a new person!!! I'm not saying I don't have aches and pains some days, but that's all they are!! aches and pains.. not debilitating like I was before.. I remember after the 2nd or 3rd infusion breaking down in tears in my dr's office because the infusions were not working.. I balled like a baby and couldn't stop.. He asked me to trust him and to just keep with the infusions.. I'm SOOOOOOOOOO glad I did!!!!!

I also take MTX and Mobic.. I was on those drugs 1st.. My dr says I've hit a "sweet spot" and lets not tweak it!!! LOL, I tend to agree!!!! If it ain't broke, don't fix it! LOL

I am a little jealous… Hopefully, I will get there soon!



remicadebeliever said:

Let me just say that I've been on Remicade for over a yr.. about a yr and a half.. when I started I couldn't walk up and down my stairs.. I would have to sit on my rear to go up and down them. I couldn't stand very long and had to use a wheel chair at walmart when I went shopping.. NOW.. I can RUN up and down my stairs.. I work out (p90x.. Don't tell my dr! hehehe) I can jog a little, but walk any where and everywhere I want, hike, etc... I am a new person!!! I'm not saying I don't have aches and pains some days, but that's all they are!! aches and pains.. not debilitating like I was before.. I remember after the 2nd or 3rd infusion breaking down in tears in my dr's office because the infusions were not working.. I balled like a baby and couldn't stop.. He asked me to trust him and to just keep with the infusions.. I'm SOOOOOOOOOO glad I did!!!!!

I also take MTX and Mobic.. I was on those drugs 1st.. My dr says I've hit a "sweet spot" and lets not tweak it!!! LOL, I tend to agree!!!! If it ain't broke, don't fix it! LOL

I hope you do 2!!!

Reading these posts with interest,I’m starting Remicade soon.

Hi I've had 3 infusions and haven't noticed any difference yet. My rheumy told me today that I should have felt the benefits from now and I since I failed on Humira, he said they are both good TNF inhibitors so there really isn't anything else to try. I am scheduled for a 4th infusion in June and I'm confused why he would say I should have already seen positive results when I've read many accounts from patients that say they didn't have results at their 3rd infusion.

remicadebeliever said:

Let me just say that I've been on Remicade for over a yr.. about a yr and a half.. when I started I couldn't walk up and down my stairs.. I would have to sit on my rear to go up and down them. I couldn't stand very long and had to use a wheel chair at walmart when I went shopping.. NOW.. I can RUN up and down my stairs.. I work out (p90x.. Don't tell my dr! hehehe) I can jog a little, but walk any where and everywhere I want, hike, etc... I am a new person!!! I'm not saying I don't have aches and pains some days, but that's all they are!! aches and pains.. not debilitating like I was before.. I remember after the 2nd or 3rd infusion breaking down in tears in my dr's office because the infusions were not working.. I balled like a baby and couldn't stop.. He asked me to trust him and to just keep with the infusions.. I'm SOOOOOOOOOO glad I did!!!!!

I also take MTX and Mobic.. I was on those drugs 1st.. My dr says I've hit a "sweet spot" and lets not tweak it!!! LOL, I tend to agree!!!! If it ain't broke, don't fix it! LOL

Frances, you haven't yet been on Enbrel, Simponi, Orencia, or Stelara. They're all options that have been used successfully on PsA.

He's apparently not happy that you're not yet responding to the remicade but that doesn't mean you won't respond. That fact that he's scheduling your fourth infusion means that it might still help you.

Up to now I have had 3 infusions,I felt no different after the first 2,then after the 3rd my SI joint was killing me for 2 days and then wow. My SI joint feels great and I believe it’s starting to work. Funnily enough my left wrist & hand are still painful especially if I try and pick something up that has a little weight to it.
Just last night my hubby looked at the way I was sat and said ‘erm since when can you sit with your leg at that angle’. It feels great although I must admit I dare not get too excited we all know how this disease works! Going for my 4th infusion today,hopefully it’s on & upwards :slight_smile:

I have been getting infusions of Remicade since late in 2012. Things are finally leveling off so I can tell what the Remicade is helping and what is not being helped. Hang in there as it may take a while. I'm just happy that most joint pain has been addressed. Some places are still sore but I'm just going to have to deal with that.

I would definitely stick with it.. I remember after the 4th infusion being so disappointed, crying in his office because I felt no different.. Just this morning.. I did Kempo X that's p90x's version of cardio kick boxing.. That is a world away from where I ever thought I would have been.. I'm so glad I listened to him and kept it up. Now, I'll tell you, it took a long time to get here! I just sent in my paper work for the extended Remistart program for the 2nd time. So, I'm going on 3 yrs. I can tell a huge difference from just last yr. I was doing very well, but I remember someone wanting me to hiking and I freaked out.. the thought of climbing and jumping over rocks was totally not any where near my comfort zone, but now I think I could do it!!! Hang in there!!! I'm always here if you need some encouraging :)

Frances said:

Hi I've had 3 infusions and haven't noticed any difference yet. My rheumy told me today that I should have felt the benefits from now and I since I failed on Humira, he said they are both good TNF inhibitors so there really isn't anything else to try. I am scheduled for a 4th infusion in June and I'm confused why he would say I should have already seen positive results when I've read many accounts from patients that say they didn't have results at their 3rd infusion.

remicadebeliever said:

Let me just say that I've been on Remicade for over a yr.. about a yr and a half.. when I started I couldn't walk up and down my stairs.. I would have to sit on my rear to go up and down them. I couldn't stand very long and had to use a wheel chair at walmart when I went shopping.. NOW.. I can RUN up and down my stairs.. I work out (p90x.. Don't tell my dr! hehehe) I can jog a little, but walk any where and everywhere I want, hike, etc... I am a new person!!! I'm not saying I don't have aches and pains some days, but that's all they are!! aches and pains.. not debilitating like I was before.. I remember after the 2nd or 3rd infusion breaking down in tears in my dr's office because the infusions were not working.. I balled like a baby and couldn't stop.. He asked me to trust him and to just keep with the infusions.. I'm SOOOOOOOOOO glad I did!!!!!

I also take MTX and Mobic.. I was on those drugs 1st.. My dr says I've hit a "sweet spot" and lets not tweak it!!! LOL, I tend to agree!!!! If it ain't broke, don't fix it! LOL

Thanks sooooo much for everyone's response on how long it takes for Remicade to work. My doc was so negative yesterday and so many people have responded that they felt the effects after their 4th infusion that it gives me hope. I don't know why he would give up so easily????

Thanks for lifting my spirits after a depressing doc visit !

warmly,

Frances

Anytime ;)