I'm all set to start Remicade infusions next week in addition to continuing methotrexate. Anyone out there willing to offer how starting Remicade affected your PsA, what side effects you experienced, etc.?
HI I've had about 8 infusions and I had no side effects until the 5th or 6th infusion - I now get wiped out for 2 days after the infusion. However, not everyone has this reaction. I'm getting infusions once a month. Remicade has helped me tremendously, except for my last infusion about 2 weeks ago - it hasn't helped at all this time and this week I've been in a lot of pain. The nurse put some sort of steriod in my IV to help out with the side effects and I may be having a steroid rebound effect. I've got a call into my Dr. to discuss.
Good luck !
I have been on Remicade since December. I found that it took longer to see any effect than Enbrel, Humiria and Simponi. But once it finally kicked in (May) it has worked better for me than they did. I am on 500 mg every 8 weeks. I would like to go to a higher dose every 4 weeks but so far my Rheumy has not agreed. I have had no side effects.
I've been on Remicade for a while now. I go every five weeks for an 800mg dose (more frequent and higher than you would start off with - I'm treating both PsA and Autoimmune Hepatitis). When I started I was, I think, at half that dose every 8 weeks. I had no side effects other than hair loss (I'm one of the FEW who experience significant hair loss/breakage on Remi) until the dose I'm on now. Now I have severe nausea for a couple weeks after infusion, and this time around couldn't keep food down for two days after infusion. The difference it makes on my joints is just short of miraculous. Without Remi, I'd be in a wheelchair, in unbelievable pain, and unable to use my arms. On Remi, I go hiking with my family through the hills of CT with no ill effects afterwards. It truly is an amazing drug for me.
I love infusion day, because I go to an awesome infusion center (for now - my rheumy wants me to switch to getting infusions in his office) with an amazing staff. I get three hours of me time, only I'm hooked up to an IV. I have five homeschooled kids, so this is like a mini vacation for me! LOL I love infusion day so much I wrote a blog post about it... http://rannygahoots.blogspot.com/2013/01/infusion.html
FYI - during my last infusion the nurse put more "steroid" in my IV and it caused be to have a painful steroid rebound. My rheumy said his PsA patients are much more likely to have steroid rebounds and with more pain than his RA and other arthritis patients.
I'm not getting any steroid in future infusions.
Hi Oxford,
I have been on Remicade for 3 years now and my Rheumy and I have had to make a lot of adjustments along the way, according to flare-ups, anywhere from 6 to 8 weeks and 300mg to 400mg. It is weird as sometimes I can feel the effects the day of infusion and sometimes not at all. For example, I have been suffering the worst flare up I have ever experienced. My Dr. recently added Luflunomide 20mg orally every other day to work in concert with the Remicade. I started on September 1st and depending on liver studies I will be able to continue and even increase the dosage to every day. And trust me, I am looking forward to this as the Remicade doesn’t work on its own for me. We tried Methotrexate but the effects on my stomach were not worth it. That said, the last two weeks have been almost debilitating for me. My wrists and hands hurt so badly that I could barely use them. My knees and hips were equally as bad and I was in tears a lot. I had to double up on pain meds and my entire home smelled like Tiger Balm! In 32 years of this, I cannot recall a flare up this bad. The good news is, after yesterday’s infusion, 400mg, I could feel the difference almost immediately. Today is as if the last two weeks never happened. I still have the same old aches and pains, but nothing like it was, and I am up and about doing housework and grocery shopping.
I have never had a side effect from Remicade, no hair loss, etc. However, my Doc warned me the Lefluonomide has listed hair loss as a side effect. That freaked me out of course but so far so good. The scary thing is this drug stays in in your system for 2 years!!! I have never heard of this. They even have a drug to counter the Leflunomide that would rid this drug in your system in a few days if needed. Just what we all need, more poison in our bodies, right? The human body sure takes a beating.
Good luck with your infusion and let us know how it goes.