I saw rheumy yesterday. I didn’t expect it to be a good visit. I am beyond fed up. Beyond tired of this pain. Beyond “let’s try this and wait and see.”
I have failed methotrexate in the most convincing of ways. My GP (primary care doc) was so disturbed by what happened to me on methotrexate that he said he would never prescribe it for me again.
I have failed sulfasalazine (salazopyrin). The headaches, nausea and diarreah weren’t great. But the depression was awful. And it didn’t help my symptoms. I took it for 5 months. Long enough to fail. Rheumy says I need to take it for 6 months to fail it ‘properly’. Had I known that back then, I might have persevered for another month. Bottom line: It did nothing for me. Considering my pain and joint inflammation is much worse now, I don’t see the point in trying again. If it didn’t help then, why would it help now?
I have failed plaquenil. Admittedly it’s well known that plaquenil is only for very mild Rheumatoid Arthritis. But I’ve been taking it for many years now. It doesn’t hurt. But it doesn’t help.
I won’t take Arava (leflunomide). It is so similar to methotrexate that even my rheumy has said he’s not comfortable with giving it to me. Why? Because it can stay in your body for up to two years. There is a washout process, but that will only get rid of what is in your digestive tract. Once its on your body, its there to stay. And if it causes the same side effects that methotrexate did, they I would be in very big trouble. Life in the psych ward type trouble. So Arava is an automatic fail.
I still take Naprosyn. Right now I am back up to 1500mg per day. Too much.
I have also tried voltarin, Mobic, celebrex, ibuprofen…I’m sure there were more. Naprosyn is the only one that works.
So what is keeping me going? Prednisone. 20mg makes life quite good. Only mild aches and pains. 15mg makes life pretty good. Mild to moderate daily pain…and a monthly mega flare. 10mg is constant moderate pain, with worse pain at night. No sleep without oxycodone, and still several nights a week lying awake because of pain.
This is what I told rheumy. He is frustrated. I understand this. He said how can he help me when I won’t take the medications?
It’s not a matter of won’t. It’s can’t. Different thing.
I asked him about biologics. Did he think they would help me?
He said he didn’t know, but he’d never be able to prescribe them. And the side effects of those medications are really scarey. He said they can cause MS – or demyelination of the nerves. They can cause all kinds of cancers. They can kill you.
He told me to get down to 7.5mg of prednisone and we would see how I was going.
I said no way. I’ve just done that. On 7.5mg of pred I am mostly couchbound. I don’t go to the gym. I don’t walk, I don’t work. My life is not a life. I told him I have spent the last 4 years in constant pain, and right now I don’t even know how I did that. I can’t go back to that. Prednisolone has reminded that life with less pain is possible. The headache and anxiety that goes along with it are worth it. They are not as bad as the pain without it. I reminded him that I lost my career, my marriage…I bought a walking stick! (And yes, to me, needing a walking stick to walk IS that bad).
I got upset.
And he? Wrote me a referral to the pain management clinic and said there was nothing else he could do.
He. Dumped. Me.