Tapering glitch while on Actemra

[Gaijin]

I was walking to the market this morning when I had to turn back and go home due to severe pain in my hips caused by walking. I lay down for a bit and felt OK. Then, while sitting, having my lunch, I suddenly felt very sleepy so I decided to have a nap, from which I was awakened by the worst pain in my shoulders I've ever had.

I had been feeling almost like I was in remission after being on weekly shots of Actemra now since May 1st, when I was on 7.5mgs.I had been tapering successfully and this morning I "introduced" 5. 5mgs for the first time, but how can that affect me so soon when I have forgotten to take my dose several times and nothing happened?

I haven't had any extra stressors either. The only thing I can think of is DOMS, as I had been swimming on a regular basis for a few days, but that too, seems odd since I didn't feel like I had pushed myself too far.

Could it be steroid withdrawal? I felt fine on 6mgs where I had stayed for 2 weeks, after tapering with 6.5/6 ( I'm rounding off as I taper a fourth of 2.5 each time) for about 3 weeks.

I've just taken an extra 2.5 mgs. hoping there is an explanation to this set back while on Actemra.

[PMRpro Ambassador]

Have another week or two at the higher dose. i wrote a post years ago called "How much difference can 1/2mg make". It shouldn't make that much difference - but remember it can take days, even weeks for the inflammation to build up to the level of causing symptoms. And some patients still need some pred - even with Actemra.

[Gaijin in reply to PMRpro]

Thank you so much for your prompt reply.. again, stuff always happens on weekends it seems.

I guess I got ahead of myself, my CRP had gone down to normal for the first time in several years which I had attributed to the Actemra.

I feel much better now, less than 2 hours after taking the extra 2.5 mgs.

[PMRpro Ambassador in reply to Gaijin]

Oh yes - ALWAYS at the weekend!!!!

[yogabonnie]

Oh so sorry .. You are cutting 5s into 4 parts. Perhaps the last few have been the "smaller" 1/4 of the pill? I know when I do that sometime some are smaller than others..just a bit. Can't you get 1mgs? .. I think it is the steroid reduction.. but not sure if I have understood this completely how you are tapering..... (but then not understanding anything completely these days!) Hope you feel better soon. I'd go back up to 6.5 for a bit and try again in a week or two.

[yogabonnie in reply to yogabonnie]

Oh I see you have gone up. Glad you are feeling better!

[Gaijin in reply to yogabonnie]

There are no 1mg pills in Spain, my rheumi gave me a tapering schedule that reduced by 2.5mgs. I was to be at 2.5 by Oct. 1st. I do realize that the my PMR will not magically fit into the rheumi's tapering schedule but I was trying by tapering smaller doses (one quarter of 2.5) every 2 weeks. PMRpro had told me that even if the cut up pieces aren't exactly the same, they would even out as I would be taking the same dose over the course of 4 days.

It's not you, yogabonnie, it's my writing that is often times unintelligible, lately!

[SheffieldJane]

So sorry Gaijin. I hope this passes quickly. Actemra is such an unknown quantity. Check in with your doctor, your symptoms sound severe.

[Gaijin]

Hi Jane, are you still cruising? Hope you are having lots of fun!

I took an extra 2.5 mg and today I feel fine... Maybe even less would have done the trick...

But the episode was weirdly intense, it came on suddenly and for the first time, I identified with the kind of pain described, that PMR causes, the kind that would be impossible to live with, without pred. I hadn't felt it ever before. I had always described my PMR symptoms as muscle fatigability but this was different... So strange.

The Actemra so far hasn't caused any side effects and I have been able to get to below 7.5 of pred. I am also able to do a lot more activity than before Actemra. I had been so sedentary for so long which I am sure has contributed to the elevated cholesterol and BP. Now I am able to exercise.

I guess I got carried away, tapered too fast, but the experience has brought me back to reality--that my PMR is still very active, despite the Actemra and normal inflammation markers. Such an unpredictable condition, this!