Ok, so down to the choices.
Anyone who has been dealing with Rheumatoid Arthritis for a while, and hasn’t found their magic combination of drugs yet, and HAS had to deal with all the pretty side effects, will know exactly what I mean.
In Australia, to access some biological drugs – bDMARDs – you need to take methotrexate concurrently.
Last time I took methotrexate, I had a reaction to it that nearly killed me. Put me in hospital. Scared the crap out of everyone around me. Scared the crap out of me, most of all.
I had this reaction after six weeks at 10mg of methotrexate.
To access medicare subsidised treatment of Abatacept (Orencia), Golimumab (Simponi), Infliximab (Remicade), or Rituximab( Mabthera) you need to be taking at least 7.5mg of methotrexate weekly.
Out of the eight biological DMARDs available, four require methotrexate. You can only try five biological drugs over the course of your life, under a medicare subsidy.
I have tried one. That leaves four. If I don’t take methotrexate, that leaves three. My rheumatologist has already said Humira is not a good choice for me. It’s likely that Cimzia will cause me problems also, going by previous experience. That leaves Actemra. I believe I need to try another TNF blocker before I try Actemra, though the literature isn’t completely clear.
So that means methotrexate.
The drug that almost killed me.
But…I only need to take it at a lower dose. I didn’t have problems at 7.5mg. Worth the risk?
Tough call. Very. Tough. Call.
The other option?
Prednisolone is loaded with side effects. BUT it keeps the inflammation at bay. It gives me maybe 60% of normal? Some days are awesome on prednisone. Some days are still hell.
It doesn’t stop flares completely. It doesn’t take all of the pain away. But it makes it ‘moderate’ pain, rather than knock-down pain. And NO I do NOT have a low pain tolerance. If I hear that one more time I WILL slap you J.
Prednisone gives me a life. A Reumatoid Arthritis impaired life, admittedly. But on most days, I can walk. I can work. I can go to the gym. Two days a week are still a write off. But five are OK. That might sound suck-worthy to non-RA sufferers. But I think any long term sufferers of severe RA will understand. Prednisone gives me a life.
Without prednisone, I am couch-bound. I am doped out on morphine and endone and red wine. I am doing the bare minimum. I am keeping my kids alive, but I am not wholy present. And there isn’t a whole lot of fun.
My doctors (two rheumatologists, and and general practitioner) tell me I must get off prednisone. But it’s the only thing that helps.
Methotrexate is the door to other treatment options. One of which might give me more improvement than prednisone has. Might J
Anyway, I thought and thought and researched and read. And I finally decided.
And once I made my decision, much of my stress left me. So much misery is bound up in indecision. So I try not to stay there too long.
Last Thursday I took 5mg of methotrexate. Just the usual side effects…nausea, that ‘kicked in the stomach’ feeling and headache. And fatigue. It passed after a day. It’s fine. Compared to RA, it’s not a problem.
So tomorrow I see Rheumy. I have to tell her I have started taking a drug I swore I would *never* take. (Credibility issues…). I need to explain my reasoning to her. Then I need to see if she agrees. Having been in severe pain for a few weeks now, its just possible that I’m not making the best choices. I don’t have a partner I can talk to, bounce my logic off. I just have me. And my reasons.
And what’s my reasoning really?
I have a friend who recently started Simponi. He hasn’t had a flare since he took his first shot, three months ago. I want what he’s having.