...is a Dupont slogan that my friends and I throw around when we're talking about the miracles of modern medicine. Twenty years ago there were few effective treatments for RA that were likely to yield a good quality of life. Since the use of methotrexate and biologics, someone who has RA can have a full life and career if the right cocktail of meds are found. I'm still searching for that right combination, but I believe I'm almost there.
I'm now on the max dose of methotrexate. It works, but not well enough. I still have daily pain. I can't hold my 4 month old baby without aggravating muscle groups for days. I've resorted to pushing the baby around in the stroller inside my own house. Several days ago, I spent 15 min trying to remove a key from my key chain before slicing a finger open. Yesterday, I was unable to install a carseat for the baby because I couldn't press the little plastic button, and had to get someone else to help me. These things are little, but they are extremely aggravating because they are constant reminders that I still need help.
My doctor has suggested that I try Enbrel or Humira since methotrexate isn't totally doing the job. They seem really scary to me, and I've never met anyone on them. It'd be nice to talk to someone who can give perspective. I could do that much more around the house or at work without relying on other people with these meds. Suppose you could take a pill or have an injection that makes your life even just a fraction easier - who wouldn't turn that away?
Wednesday, May 23, 2012
Subscribe to:
Post Comments (Atom)
9 comments:
I've had to take some medications to control my migraines that, well let's say I struggled through until it was obvious that I really couldn't function without trying something else, because I knew what sorts of medications were left to try. The medication I'm taking currently was tough initially to get used to but I think what many of us who live with pain forget is just how much of our lives we give up because of the pain, and if you don't have to, why should you?
I am fortunate now that I haven't had a full blown migraine in a couple months now and I am so much more productive - plus I am free to live my life without worrying that I will go somewhere and be exposed to one of my triggers, ruining my plans for the day. Still, if it hadn't worked, I was at the point where that risk/reward was worth it for me.
See what you can find out about the drugs of course, I can't speak to either of these two medications, but do as much as you can to live with the least amount of pain possible. Life is tough enough already. *hugs*
My wife, who has had JRA since she was 9, has been on both bioligics.
After a week on Enbrel she jogged around the block because she wanted to see what it was like to run again. She didn't continue to do that, as her body probably couldn't take the pounding.
After about 4 years Enbrel was slightly less effective, so she switched to Humira.
I don't know anything about RA myself, but I do know a blogger who often writes about it, including her taking Humira/Enbrel: http://theseatedview.blogspot.com/ You're probably already aware, but just in case...
I have taken Humira for 3 years and Enbrel for 2 years before that, for ankylosing spondylitis (different joints affected, but not dissimilar from RA). Recent studies have suggested that the previously suggested cancer risk of the drugs was exaggerated--it turns out tumor necrosis factor alpha has very little to do with tumors at all. As for the decreased immune system, I have always been a person who gets colds, and I continue to get colds.
Even if I were getting sick more often, the fact that I no longer suffer from debilitating pain and fatigue on a daily basis and was able to finish my dissertation and start a tenure-track job makes all possible side effects totally worth it.
My experience is not at all unique. I encourage you to check out sites like the Arthritis Foundation or any of the many RA blogs to read the stories of hundreds and thousands of people who have gotten our lives back because of these drugs. I also encourage you as a scientist to read the studies for yourself and see just how effective these drugs are and how low the risks really are.
@ Anonymous. Thank you for tipping me off to that blog! It's great!
I've been on most of the biologicas (Enbrel, Humira, Remicade, and now Cimzia- switch offs happened for various reasons- Enbrel had a shortage when it first came out, Humira and Remicade stopped working, but Cimzia is doing the trick for me). They have seriously absolutely changed my life.
The first day after I took my first Enbrel injection I woke up, and for the first time in forever I actually didn't feel so exhausted that I just wanted to get back in bed. For the next week I went around thinking "if everyone else feels like THIS all the time, why on earth aren't they all getting more done!".
One resource I really like is Creakyjoints- the message boards are slow, but the people on them are really nice and helpful and non-whiny.
I've been diagnosed with psoriatic arthritis for almost three years now. After 6 months on piroxicam and methotrexate, the doctor prescribed Humira. My "claw hands" showed immediate improvement after about 4 days. The swelling went down in my index finger after about 4 weeks (2 doses). I've had a couple years of an "extended good response" to the medication. Now I'm seeing a re-emergence of my symptoms: fatigue (the soul-sucking kind) and am experiencing the "rubber band snap" of my fingers again. So I'm taking tramadol. I'm now modifying my diet to go grain free etc. I already eat lotsa veggies and have cut down on meat. Also helpful is an omega-3 oil supplement. I found the TED talk from Dr. Terry Wahls on MS remission (another immune disease) from diet changes very interesting. Anyway, thanks for sharing!
I've been taking Remicade for about 10 years, and Enbrel before that. The Remicade is a miracle. I have minimal arthritis pain, and much less fatigue. I have absolutely no regrets.
I've been taking Remicade for about 10 years, and Enbrel before that. The Remicade is a miracle. I have minimal arthritis pain, and much less fatigue. I have absolutely no regrets.
Post a Comment