You may, or may not, know my story. If you don’t, you can find details here. The back story is kind of interesting, especially if you want to know where my head was in 2011. Reading back over it, I realized that I have spent 9 long years knowing I have RA. I’ve come a LONG way (physically, location wise, mentally) in those 9 years.
During those years, I’ve head good experiences and horrible experiences with my RA meds. I guess maybe it is a good thing, now, to reflect and consider that adventure…
When I was diagnosed, I was IMMEDIATELY put on prednisone to try to get the inflammation down in my joints. I was also started on Methotrexate (MTX). From the get go, MTX made me nauseous… as I went from 2 to 4 to 6 to 10 pills it made me more and more nauseous. I would take my pills on Friday night as I was already laying in bed because as SOON as I swallowed them I felt dizzy, light headed and like I was going to throw up. It was not pleasant, but it worked. I honestly thought that was going to be my forever.
But I talked to my doctor (I miss Dr Booth a lot) and we decided to start on injections to see if that helped any of my side effects. MTX, with injections, still made me kind of dizzy for a couple hours, but it was way better for me than the pills. I could get an injections and still go live my life and (at least for several years) it was effective.
Sometimes I had trouble getting MTX (like when there was a shortage for a couple months) and sometimes pharmacies would give me grief (no, they don’t MAKE your MTX with preservative like you can get any LITERALLY any other pharmacy on the planet… you need to make your doctor write your prescriptions in the RIGHT way so we can take ALL all all all all of your money) but for the most part, my adventures on injections was pretty simple.
It wasn’t the be all and end all medicine for me, though. It did about half the job and Dr Booth could still see/feel the inflammation in my joints.
So I started on Enbrel. Stomach injections… pricey…. but for about a year IT worked the other half the way to being nearly (if not quite) “in remission”. It was close enough that I could function nearly normally.
Then I had surgery.
AAAANNNDDD Enbrel decided it was done working for me.
Quick switch to Humera… which worked pretty well for me for about 18 months…. until I had surgery… annnndddd… that gave up the ghost as well.
The doctor said that the stopping working was probably only coincidental to the timing of my surgeries. That sometimes they just only work for a certain amount of time and then stop working. Yay…. She also told me that there are a lot of people who have the same story I did of working a while then stopping working because their RA doesn’t respond long term to those medications but that (in their INFINITE wisdom) the insurance companies will only allow the Dr to follow on rabbit trail to controlling the progression of the disease. The cynic in me honestly believes that the drug manufacturers have enough pull on the whole freaking society that the reason you HAVE to take A then B then C is because they all want a share of the money. And… when you’re talking anywhere from $2000 to $10000 a month it’s kind of a nice pie to be able to share in.
Then I started Orencia infusions. Those have stuck the longest. So far we are at about 6 years and counting. They still are doing their half for me. It means getting tied up in the infusion center for a couple hours a month, but that is kind of a small price to pay.
Also, MTX quit working so well for me and I started (two years ago now) on Arava. I like Arava way better than MTX. Even with the injections I still had some side effects… hair loss… dizzy for a couple hours… and I had to always travel with injection materials. Arava is a one pill a day thing and I’ve had no side effects with it. It is taking care of the other half of the situation for me.
So far, I’ve had no issues with getting my Arava and I’ve been approved to keep taking orencia until 2020… add in losing weight, exercise, and eating better and right now, I’m doing pretty good. Knock on wood… I hope that continues for a long long time.
Love and Light
Great post April. For me I was on Remicaide for 7 years before it stopped and then it was a rapid progression through the medications until I got to Rituxan. I have used Rituxan for 4 years with wonderland success.
I have those crazy mouth sores with MTX and Arava and all the rest.
I do believe that makers of the various medications should at a minimum be required to provide a test to assess a probability of success when using the medication.
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It’s weird how for some people, their RA is so cantankerous that you have to skip from medication to medication to keep it down. Crossing everything that this is the one for you.
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