Tuesday, October 15, 2013

Remicade and RSD/CRPS

As part of my health issues is weird autoimmune nonsense (technical diagnoses are Seronegative Rheumatoid Arthritis and Unspecified Connective Tissue Disease, aka "We have no clue what's actually wrong"), I take immune suppressing medications. I currently use 3 different ones: Azathioprine, Prednisone, and Remicade. The Azathioprine controls the issues I have with swallowing, helps prevent weight loss, stimulates my appetite, prompts saliva production, reduces my sun sensitivity, and a few other things. The prednisone is meant to be temporary- I'm actually in the process of coming off of it. We started it to help control things while I made the switch from methotrexate (an extremely common immunosuppressant) to the new meds and I'm very slowly tapering off.

Remicade is a biologic medication. You see commercials for biologics all the time on American TV these days, for some odd reason. The typical order of meds tried for autoimmune disease is Plaquenil (an antimalarial that modulates the immune system versus straight up suppressing it- it makes me vomit profusely), then methotrexate, sometimes the next step is Arava (not recommended for women with intact, working reproductive organs), then on to the biologics. Biologics leave you with little to no ability to fight off infection, they're very expensive at about $3,000 per infusion, and they require extremely close monitoring. Commonly prescribed biologics include Humira, Remicade, and Enbrel. Some come in an autoinjector and some must be done via a several hour long infusion at a chemo infusion center. I'm lucky- my rheumatologists office has it's own infusion room complete with goofy TV playing and very friendly nurses who know their patients inside and out.

Today was Remicade infusion day. I go every 8 weeks and see the doc, have blood drawn, then have a 2 hour infusion. We upped my dose today by 33% in an effort to get better control over the arthritis. Currently, the arthritis is very inflammatory, causing massive fluid buildup in every single joint in my body. The biggest hassle, though, is the elbows and wrists. The fluid build up impinges my nerves and causes pain and numbness in my hands and arms. Drives me bonkers, since it makes typing, net surfing, knitting, spinning, and even cooking more difficult. Since today was my 4th infusion and most patients see big results by 1 week after the 3rd, we upped the dose some. I've got my fingers crossed that this works.

The weirdest part, though, of the infusions is that once the Remicade hits my system, my RSD/CRPS pain flares immensely. I actually have to take extra pain medication in advance of the infusion to cope with the pain. The pain levels take about 1 week to completely normalize. Considering the fact a normal day for me means pain levels at a 5-6 out of 10 and a bad day is a 6.5-8, a pain spike means complete hell. I figure I'll spend the next week working on my design portfolio, ensconced in my very comfy recliner.I just wish I could get some answers as to whether or not this is a normal reaction to Remicade for an RSD patient. But since RSD is fairly rare and Remicade is neither for the RSD nor a first line drug, finding an RSD patient on Remicade has proven impossible thus far. My Rheumatologist has no clue either. La sigh. The fun of a rare disease.

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