Rheumatoid Arthritis and five weeks off all meds except prednisone

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Five weeks off all drugs except prednisone. Day 3 of 15mg of prednisone, and life is hard. I had to take a whole lot of extra oxycodone, washed down with red wine, to deal with the pain tonight. I just needed a break. I needed to escape.

This is not a good habit to get into.

There are no mild days anymore. There are some moderate days, and a lot of hard nights. I’m adjusting everything down…workouts, house work, writing…life. My world is getting smaller again. I am mostly at home. Alone. I’m making a huge effort to get to the gym. For the social aspect as well as the physical therapy. It’s my only social outlet. I need it. I am also making a huge effort to keep myself occupied on my various projects. My website. My blogging. My photography. But those are solitary pursuits.

Should I start taking meds again? Which ones? My neuro doesn’t know (or care much it seems). My rheumy doesn’t answer my messages. Nothing new there. It’s really up to me.

I don’t know what to do. I need someone to talk to. Someone to run it all past. Someone who will listen, think about it and help me make a decision. I know it’s my decision, and I’m the only one who can decide what to do.

These are the times when its really hard to be alone. Having a partner is not about having someone to take out the garbage, or do the dishes, or make dinner, or fold laundry. That’s not the stuff that matters to me. It’s having someone who cares enough to take the time to listen, learn, understand the issues and give their thoughts.  You can tell when someone cares, because they ask questions. And listen to your answers. They talk as well as listen. That’s why its hard to be alone.

Talking to myself isn’t helping much ;).

l’ll have another MRI in about six weeks to see if there are any more bright spots…signs of MS or strokes. I’m quite convinced that the MRI will be clean. Optimist?

In truth, meds were helping maybe 20-30%. Not much. But a lot when you’re close to the line. It’s a whole lot then.

But it’s not very much IF the meds significantly raise the risk of a major stroke, or developing MS. But do they?

I don’t know what to do. I need a friend to talk to. All your comments and thoughts are welcomed.

5 COMMENTS

  1. I really don’t know what to suggest, I forget who took you off all the meds, but I’m guessing this is until they have a clearer picture of what’s going on re the mri of your brain. For that reason if it were me I’d hold off of starting any meds back up until I’d at least spoken to whoever took you off of them. Of course that would be easier if they’d do the decent thing and answer your calls.
    In my honest opinion if it were me, I’d not do ‘anything’ that made things worse, I know you love the gym, but that’s something I would not do until I had the pain back under decent control. I’d do everything possible to baby those joints, and get as much rest as possible. Of course I’m lucky that I’m in the position that I can do that as I have an amazing hubby that helps me out, a lot, and kids that do their bit too, as I’m sure your kids do also. I can’t imagine doing this without a partner, and I feel for you so much.
    Use what ever methods you can that help, heat, pain relief, the odd drink if needs be, I know I do, but like you am very aware of not over relying on drink.
    Can you safely up the pred just while you’re off the other meds? I know that has it’s own issues and that your body is already reliant on pred. I just wish the doctors would answer their damn phones and give you a heads up on how to cope with this period.

  2. What about a support forum? I’ve found the discussion group at Roadback to be extremely helpful, though they are all on AP and won’t have a lot of advice outside of that. But they’re a good group. Maybe you can find something similar?

  3. Hi, my world is feeling small too. Had surgery for female problem this week. Taking med for that pain, but RA swelling is terrible today. I’m still too weak to do much and my friends are busy at work. If it weren’t so cool and rainy, I think I would be coping better. It’s just a dull day

    • I totally understand. I hope that some of your friends make time for you on the weekend. Just a bit of company can do a whole lot to help me feel better.

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