I've just had my 16th weekly shot of Actemra and I am tapering 0.5 mg of pred every 2 weeks, now on 5/5.5.
My PMR symptoms seem to be under control, I'm in Bern for my grandson's first birthday and have been amazed at all the activities I have been able to do, like swim in a river (Aree) which has a strong current and requires quite a lot of effort to get out of,running after the one yr old, etc., without getting DOMS or niggles. However, I feel nauseated and drowsy almost all day. I fall asleep while talking on the phone! I'm wondering if it's just the adrenal glands that haven't "woken up" yet. I have started splitting the dose, 2/3 when I wake up and 1/3 around 3pm, I can feel I need the dose of pred, something I had never felt before. On higher dosis, I had never felt that, even when I forgot to take my daily dose of pred.
I don't see the rheumi till the end of Oct. by which time I am supposed to be at 2.5 mg. I also have an appointment with the endo in November.
My question is, do I keep tapering, hoping the adrenals will kick in?
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Gaijin
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Beautiful child! Wonderful head of hair! Joy makes us better!
I am reluctant to dispense the usual advice ( stay where you are for a while) because of the unknown quantity ( to me) that is Actemra. Your symptoms do sound like sluggish Adrenal glands. What about a Synacthen Test? You could stick at 5 and a half until you see the Endo. And the Rheumie. It won’t make a lot of difference to the taper but may just give your Adrenals a chance. I do get little sparkling bursts of energy almost as if I were normal. I am hoping that it is my Adrenals. I am on 6 mgs - just.
Lovely pic of your Grandie - I will however leave the tapering comments to those better informed than me - anything under 10mg would delight me at the moment - I have so far to go as you know Gaijin - pleased you are doing as well as you have been to date ....
I wouldn't if it were me - I'd stick there for a month, i.e. halve the speed of drop, and see if the fatigue improves. And call your endo if you can long before November. The Actemra allows the reduction with regard to the PMR/GCA - the adrenal function returning is a separte thing altogether and you have been on pred and at highish doses long enough for it to be a factor.
I like Bern - and with an attraction like him you must be having fun!
Thank you PMRpro.. I will try to get an earlier appointment with the endo when I get home and stay on 5.5 for now.I hate to disappoint the rheumi but it is what it is. It's true he said, that even the sjogrens symptoms would improve on Actemra but he didn't factor in the adrenal function. My pituitary gland has diminished greatly in size, after an apoplexy I had on it about 10 years ago. Not sure if it could be related but it's part of the adrenal axle or sometning.
Bern is beautiful, breathtaking views from the mountains and the river with the pristine water that runs right through the center is pretty amazing.
We went to a church do there - a student priest at our home church was being sent there. We stayed on the campsite and walked along the river into town.
Swimming in that river was a unique experience. In my present state, it was a bit risky, as getting out requires swimming against the current, but my son and DIL have a lot of experience and were able to help me.
I don't take Actemra but regardless I think your taper needs to slow really down now. Your Rheumie might want you down to 2.5 but not in the timescale he recommends, just listen to your body. I would ring his secretary, don't wait.
Thank you, Telian. My rheumi always hands me an unrealistic tapering schedule when I see him,, I have never been able to comply. He wants me to taper by 2.5mg monthly (smallest denomination available in Spain)! At least he never reacts negatively when I haven't tapered to his expected dose, although this time will be the first after being on Actemra.
Perhaps you could say there are 1mgs out there! What's going to happen when you get to 2.5mg you can't just stop or is that what he thinks will happen! Sometimes these doctors need educating...if there's enough need, and there is, perhaps he can take the lead on this one....
I think that is exact what my rheumi believes. He will probably tell me to alternate 2.5 with zero for a month and then just stop. I've been cutting the 2.5 pills in fourths, which still gives me more than 0.5. Maybe I'll ask him if I can give the pill a few licks😂
I agree with you that docs need educating but most of the ones I've come across are not at all open to any suggestions, sadly.
You've got a contingency plan there, good thinking - you shouldn't have to go to those lengths but it is what it is. The problem is they think they know it and they don't! I'd 'lick' the pills too, regardless what the doctor said, him being so unhelpful. My sister did just that she crushed her medication and used to dab her finger in until she'd weaned off, it worked for her.
I read somewhere that PMR is not rare in Spain and yet the two rheumies I've worked with for my PMR, who both work in large university hospitals, seem to prescribe stuff that is totally different from what the forums recommend. There is such an easy protocol already established, why they can't all follow it, is a mystery to me!
I had a synacthen test recently, I have to remain at 5 mg as my adrenals are not up to par yet. If I do too much , I certainly know about it, the fatigue strikes until I pace myself again!!
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