Actemra works…its a miracle


Actemra is a miracle, my arthritis is moderate (by my standards, it’s all relative). Back pain is still severe. But I’m dog sick and miserable still, I’m puffed up like a balloon, with about 5kgs of water weight everywhere. Every morning my eyes are swollen shut and it takes until about 10am until I can see. I have an itchy rash all over, and hay fever stuff, headache, sinus. Stomach pain is still there, but its dull and nauseating now. Unless I eat something, then it becomes intense. I had some pureed pumpkin yesterday, but that’s about the only thing that I can digest without vomiting and severe pain.

This has happened before, and I’m guessing its allergies exploding, EoE etc cos I’m down to 11mg of pred. Ulcer probably still there too. Not enough prednisone to keep symptoms at bay. Anti-histamines don’t seem to help either. I’m miserable and fed up, and I’m sick of hearing about it, so I’m betting you are too!

I’m quiet cos there’s not much to say. I’m a mess, but it isn’t arthritis. It’s still a haywire immune system though I guess. It’s not as bad as being in severe pain every day, but then, few things are.

Not a lot of point seeing doctors, they have no idea. I have an appointment with my immunologist in a month. She’s dead keen to see me (not). It’ll just be another one of those ‘well, I don’t know, and I can’t offer any ideas’ appointments. Maybe I’ll cancel. I’ve gone to phone my GP several times…and hung up. What’s he doing to do? Nothing. I’m so bloated that none of my clothes fit. My jeans are usually loose, they are skin tight now, I can’t wear them. It makes me feel like crap. Maybe a diuretic would help, but I’m already taking one as part of my BP meds.

I have an appt with a physio tomorrow, she specialises in active physical therapy for chronic pain. I told her I need help to wake up my left side and get it as strong as my right and to improve my strength, function and mobility which is impaired due to RA and damage done. She seemed right into that, but then started lecturing me on the ‘reasons for chronic pain’. I told her bluntly that I do NOT have a pain sensitisation syndrome and I wasn’t interested if that was the direction she was taking. She said she understood that RA is tissue damage and inflammatory pain, and my spine is degenerative arthritis, not nerve pain. I have my doubts, but I’ll give her a try.

My whole house is still a mess. Much of my furniture is still outside, sitting in the weather. My back yard looks like a junk yard. I’m dealing with things slowly, cos I need to pace myself and I can’t seem to organise my brain.  It’s all overwhelming. It’s simple stuff and I know what i have to do, I just can’t seem to put it in the right order.  And there’s a lot of stuff that one person just can’t lift on their own. Gamerboy can only do so much before he loses it. But I’m sick of all the junk everywhere so I inch things from here to there, and at this rate it’s going to take weeks.

Anyway, I’m going to stew some apples in the slow cooker now. That should be safe to eat. If I keep my food to one bland thing for a while, then I know it can’t be food related. I’m just allergic to the world right now.


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