I haven’t been online for nearly a week because I’ve been very unwell. Only it hasn’t been RA that has knocked me down this time – it was an adverse reaction to my meds….methotrexate and prednisone.
As a result I’m going off all my meds. (Doctor approved). Except maybe plaquenil…it’s so innocuous it hasn’t done any harm. Don’t think it’s helped at all either though.
Anyway, today is meth day and I’m not taking it. I am never taking methotrexate again. I was so determined to tolerate this drug this time. But after my fourth attempt – and managing for six weeks – it’s over. Some people can’t tolerate methotrexate. I am one of them.
The really sad thing is I think it was helping my joint pain. That’s one of the reasons I was trying so hard to persevere. The other reason is that, being in Australia, if I can’t tolerate methotrexate or officially ‘fail’ methotrexate (3months at 20mg or more) there are no other treatment options.
Or that’s what my rheumatologist told me. I know that some rheumatologists ‘fudge’ things so that their patients can get the expensive biologics. Maybe I will try to find one of those.
Or maybe I am now so afraid of drugs and their adverse effects that I don’t even want to go there.
I am tapering off prednisone as quickly as is safe. I’m at 6mg right now. I’ll taper down by a 1mg every five days. I’ve been on prednisone about 16 weeks now, so I can’t taper any faster. Even though everyone agrees I need to get off this drug now and forever.
So in about 4 weeks I will be drug free. I have stopped my Naprosyn. I might still take plaquenil. I haven’t fully decided.
As I have been tapering off prednisone, the pain has been increasing. You will remember that the reason I went back onto prednisone, even though I swore I would never take it again, was because the pain got so bad, 24/7, excruciating, unable to function, that I needed some relief. I was looking at walking sticks and not able to drive safely.
That was also why I agreed to try methotrexate one more time. It was the only option. Or face a lifetime of pain.
My own determination to beat this drug was my undoing – I knew it wasn’t doing me any good, and I continued to take it. I should not have.
It’s a week since I last took it, and I am starting to feel better. I should take it tonight. I will not.
I am going to find out what my baseline is now. After five years of trying every medication under the sun and feeling a bit better, and then a whole lot worse, then a bit better, then a whole lot worse…rinse and repeat…I am now going to see what ‘normal’ for me is. How much pain I truly have to live with.
As I’ve said before, I don’t have a lot of joint damage. Or not visible on x-ray, anyway. My fingers only swell sometimes, and there’s only a very little deviation. My feet are the same. I can see the changes in them, but they are definitely not severe. My knees swell sometimes. The pain in my hips, shoulders, elbows and ribs is completely invisible. My bones pop and crack…but that’s not damage. That’s just noise.
So I am now going to see what day to day life is like unmedicated. I may have no option but to look at alternative therapies, diet, herbs, I don’t know what else.
I don’t recommend this. My doctors agree that I need to go off all medications. I am not saying anyone else should. I am actually a bit scared of what’s going to happen over the coming weeks. I know I need medication. But I also know that my body is not tolerating the heavy duty drugs. So I need to ‘detox’ for a while. And then, in consultation with my doctors, decide what to do next. I see my rheumatologist in six weeks. By then I will have been prednisone free for 2 weeks, and methotrexate free for 6 weeks. I stopped taking Naprosyn six weeks ago, because my pain levels had improved so much I thought I would try to go without it.
So no more meds. I don’t have a choice and I’ll document how bad “bad” gets here. If you have any non-conventional medicine treatments that have helped you, please comment and let me know.
I am already taking fish oil and vitamin D. I am going to exercise as much as is possible. I can already feel that there are many exercises in the gym that are off limits from here on in. The pain is increasing. My grip strength is decreasing. The distance I can walk is decreasing.
Wish me luck.