Monday, October 13, 2008
Free Falling... not
Someone online had asked about taking those 'chemo type' meds for my Rheumatoid Arthritis and if I had ever tried them. I don't remember who asked... maybe my Sangria friend, Linda? Maybe, but I do remember that I didn't answer.
I do, in fact, take one of those medicines. I have in the past taken several; some that worked, some that didn't.
The best one I ever took was Remicade, which was given in a montly IV infusion. It was the best. Unfortunately, at about 10 months into the treatment, my body began to have an allergic reaction. After two months of trying to work around that (by dosing me with steriods via IV and benedryl) the allergic reaction progressed to chest/breathing discomfort, hot flashes, and we had to stop as anaphylaxis (or my throat closing) was probably next.
I also tried Orencia - also a once monthly IV infusion, but it didn't work that well and I had horrible mouth sores the entire time I was on it. Imagine constant cold sores. Ack. It was NOT fun.
I am currently on Enbrel, which is a shot that you give yourself at home once a week. It is similar to Humira which you also give yourself at home.
In addition to that shot, I also take 2 other immunosuppressive drugs, methotrexate and plaquenil. For some reason, Rheumatoid Arthritis and its ilk, respond best to this 'cocktail' type approach. My lupus is supposedly in remission, which is good.
What prompted me to do this entry tonight? Well, it was two commercials I saw on tv for Rheumatoid Arthritis drugs. One was for Enbrel and one for Orencia.
The Enbrel one annoys me everytime I see it. Oh yeah - take Enbrel and ride bikes and hike and run and be just great!! Pffft.
The Orencia one was by far the better commercial, MUCH more accurate in its description of what it can and will do for you. It showed a woman in her 40's like me (except she was all skinny and cute, the bitch, but that's hollywood!) just happy to be able to do simple things. Open a big jar, cut up food, hold the steering wheel not so painfully, button her clothing easier, etc.
I shouted in my head - YES! That is it! The TRUTH! MOST of us on these drugs are just happy to get that. Just being able to do stuff with our family, take care of simple personal needs, and live. That's it.
Oh maybe there are a few who feel so wonderful that they can do all those super active things in the Enbrel commercial - and yippee for them - but that hasn't been mine or most people's experience with these diseases.
I have been emailing with a group for 4 years, and none of us, despite the multi-medication cocktails can do any of that. Not anymore. Some are more active than others, but all of us struggle.
All of us have had flares so badly (even with the meds) that we can barely get out of bed. Many of us take our morning meds and watch the clock as we wait for the relief to start to kick in.
And, yes, I also drink my beloved coffee to help jump start the ole' bones!
Most of us, including me, take really strong anti-inflammatory meds each day, too. And, pain killers. And, many of us prednisone.
I am lucky that I am not on the prednisone, but it is a double-edged sword. My life day to day would be better on it, but it's side effects will harm me more in the long term.
Long term use usually brings diabetes and kidney problems and brittle bones.
Not that I am without side effects now. The Enbrel and the methotrexate tire me out. Only for a day, better than full chemo, but it is there. The methotrexate also sometimes upsets my stomach. The plaquenil has dried out my skin and made me ultra-sensitive to sunlight.
My dad often complains that I should just stop taking all the medications, because they don't work. But I know they do. I would barely leave bed at all without them. Even worse would be the internal damage to my joints which they aren't stopping completely, but they have slowed to a crawl.
Living with Rheumatoid arthritis is hard, but thanks to these drugs we are living with it now. It no longer is shortening life spans by ten years or putting you in a wheelchair by sixty. I'll take that.
It is an invisible disease though. And, sometimes it is hard. So, when you see a woman or man who looks too young to be in the handicapped space or using a motorized chair/cart at the store - think twice before you judge.
It may be me or one of my pals, having a bad day and just using the tools out there to make our lives easier.
Oh my... I have really rambled on haven't I? Thanks for reading if you didn't start snoring halfway down! LOL