Ok ladies and gents, I haven't been posting much but still pop my head in a couple of times a week. I have found a sarcoidosis support board that's good for info and such but since remicade isn't actually approved for sarcoidosis, not too many people there are getting the infusions.
When I first started getting my infusion back in February, I had almost no side effects. Some mild nausea shortly after and more of a headache for a day or two that sometimes developed into a migraine. I am prone to migraines so didn't think too much of it. It seems the more infusions I get, the more side effects I am getting. I am getting 10mg'kg every 4 weeks.
I seem to have a pretty much constant yeast infection for the last couple of months, oh joy and read that because the remicade lowers the immune system that this can be a side effect. I am getting more headaches overall, not necessarily migraines, thankfully, but a LOT of headaches.
This past infusion I got SO sick. My temp spiked a bit to 101 and they made me stay at the hospital until it was under 100 but all my other vitals were normal for me. My heart rate is always high but it didn't go much higher than my normal 90-100. I drove the 15 minutes to my office as I typically go right to work after an infusion. By the time I got to my office, I was dry heaving and felt like I had a nasty case of the flu. I knew I couldn't drive so called hubby to drive the 30 minutes one way to come get me. I slept the rest of the afternoon and still felt sick. The next morning, nasty migraine, explosive diarrhea (sorry if tmi!) shaky, I just really felt out of it. My temp was normal. I HAD to go to work but after dry heaving for the majority of the day my boss took pity and let me leave a little early.
Over the next couple of days, things settled down. I was afraid I was having an allergic reaction to the remicade but according to the info I find on line, all that is listed in the possible side effects. I did NOT have any hives, itchy and my breathing wasn't any worse than it usually is neither was my joint pain. So, I think its safe to say that it wasn't an actual allergic reaction but just got hit with all the possible side effects at once.
I looked up the pre meds they sometimes use as I don't get those and was wondering if I should start. However, the pre meds are benadryl and a type of steroid. According to Google, the benadryl is for people who DO get itchy or get hives, which I have never had. And the steroid is used to help your body from building up antibodies to the remicade which causes the remicade to stop working. This is more for people on a lower dose or those that get the infusions less frequently or have had to stop it for a while than restarted. My understanding is that I'm unlikely to build up antibodies on my high of a dose, getting infused every 4 weeks. So, I don't think the pre meds will help.
I thought about asking for anti nausea medication but I can't seem to find one that is compatible with my pro-longed QT heart condition caused mby the sarcoidosis. Not sure where this leaves me??
Anyone else get these sort of side effects and how do you treat or deal with them?
I also had migraines which were made worse by the Remicade. My neurologist spoke with my rheumy and they decided to premed me with 40 mgs IV solu-medrol. It has done wonders. While I still get the headache at the time of the infusion in the early afternoon, the headache is gone by bedtime and does not cause a problem in the following days. (I was having a 4-day in bed migraine after infusions before this pretreatment.) I also take an 8 mg Zofran tablet as pretreatment for nausea.