For the last year I have been battling an arthritis flare with increasing doses of Remicade and I'm just barely keeping things together. In the last 6 months they added Crohn's to my diagnosis and that put my Remicade at every 4 weeks instead of every 6 weeks. I also take the max dose of MTX. I have already been through Cimzia and Humira with limited results. I am able to keep the Crohn's under control with additional drugs (balsalazide) and sometimes have to supplement prednisone. Even with all of this medication, my metabolic rate seems to be off the charts and I cannot keep weight on despite eating as much as I can of healthy foods (no processed or excess sugars which bother my stomach.) I am now getting low grade fevers as well. Has anyone had this experience or any luck keeping it at bay? I know most people are not sympathetic if they think you are too skinny, I am getting horrible comments from my coworkers. It is demoralizing.
I recall you posting something similar before, I'm sorry to hear that you are still having problems with your weight and that your coworkers still feel free to make unpleasant comments.
The one time I had a long-lasting flare I did lose weight and I also had low grade fevers and uncontrollable fits of shivering. It was summer but we started keeping a well-insulated ex-army sleeping bag in the living room for me to crawl into to try to get warm. Another odd thing was that my eyes looked very glazed & the lower lids sagged showing the red area inside which is something I associate with very elderly people. Perhaps that was connected to the weight loss or just another aspect of the flare but anyway they aren't like that anymore.
I really, really wish I could say that I know of a way to diminish these horrible symptoms other than finding a drug that stabilises the disease, but I don't. PsA can really knock a person for six, that's for sure.
What does your rheumy say about all this? I guess the flare may run it's course before too long, I really hope that happens soon. I'm not much use to you but I definitely have some idea what you're going through.
My rheumy basically said that since my body is fighting itself I'm just burning a lot of energy to keep it up and I have always been on the thin side anyway. It leveled off for a while and then started back up where I have lost even more weight. The frustrating part is that Remicade is weight based so the more I lose, the smaller my dose is but there is nothing I can do about insurance covering more than the max mg/kg. I was just hoping someone had a regimen that worked for them. I shiver like crazy in the evening, but then over night I get the fever and wake up hot. Maddening!
Can you identify anything that helps? Anything that you were doing differently when it levelled off? I expect you've been racking your brain trying to work out how to help calm this flare.
Mel B said:
My rheumy basically said that since my body is fighting itself I'm just burning a lot of energy to keep it up and I have always been on the thin side anyway. It leveled off for a while and then started back up where I have lost even more weight. The frustrating part is that Remicade is weight based so the more I lose, the smaller my dose is but there is nothing I can do about insurance covering more than the max mg/kg. I was just hoping someone had a regimen that worked for them. I shiver like crazy in the evening, but then over night I get the fever and wake up hot. Maddening!
When I first started Remicade, it leveled off. I feel like my body gets used to the biologics very quickly and once that happens I start flaring again. That's the only explanation I have. I have kind of a honeymoon phase with the biologic and then all of the sudden my body says, uh, hold the phone I don't think so.