What are the expected effects of tapering?

[Grammy80]

I'm going at about half-speed today~~better than yesterday. After almost five months on high methylpred in December started tapering. I also do weekly injections of Actemra.

The first taper from 64 per day to 32 I felt nothing, from 32 to 24 I had a period of a few days where I was uncomfortable and then things seemed to balance out. This past Thursday I dropped to 16mg per day after two weeks on 24 ...and I'm really exhausted, headache etc. I feel better today than yesterday...some more energy.

Is there always an adjustment or transition period when you taper? Is this just part of the experience? Thanks~

[Willow33]

Hi sorry can’t answer that question but hope you feel better soon. I know my tapering is getting me down, but just thinking eventually it has to get better.

[Grammy80 in reply to Willow33]

Thanks, Willow...I know at the last taper I felt better after 3-4 days....so we shall see. Unpredictable !!! which is why I need and value the forum...there is so much experience out there even though we are all unique~!

[GOOD_GRIEF in reply to Grammy80]

It's not unusual to experience some discomfort after a taper. When it resolved after a few days, we call that withdrawal. If it builds, we call it a flare.

I don't know how Actemra effects this pattern.

[Grammy80 in reply to GOOD_GRIEF]

I will see what tomorrow brings...thanks

[PMRpro Ambassador]

I'd say yes if you are dropping by such relatively large amounts each time. The Actemra will allow that in terms of flares of the disease but it won't change the effect of so much less pred on the body. The 10% rule is not just to reduce the risk of flares- it is also to make it all rather more comfortable too.

[Grammy80 in reply to PMRpro]

Thanks It did seem like a large percentage compared to what I read on the forum. I'll see how it goes tomorrow...and if this discomfort doesn't let up, I'll call the Doctor's office. I don't mind some discomfort at all...but this has been fairly sharp...I'll see if it declines tomorrow. I just had bloodwork done last week and it was normal for the first time.🌸🌸 I really count on all of you so much...and I'm so grateful.

[PMRpro Ambassador in reply to Grammy80]

The fact that sed rate and CRP are normal does not necessarily mean as much as it might with pred - a top rheumy in the field in the UK says she relies more on symptoms than sed rate and CRP for her Actemra patients.

[Grammy80 in reply to PMRpro]

When I was in full blown pred-head I had a consult with two other rheumies...it seems to me one of them said the same thing. Being in the fog that I was ...I hadn't thought of it....but I remember him saying....one shot of Actemra and I'll have no indication of inflammation. It makes sense to me and frankly...the way I feel right now doesn't. It isn't horrible but I wonder if it is necessary. Thanks!🌸🌸

[HeronNS]

And, as far as I know, Actemra doesn't do anything to compensate for adrenal function which has been dampened down by the pred, so that may take a while to get efficient again. It shouldn't be an issue yet, but be extra careful once your pred dose is below 8 or 10 mg.

[Grammy80 in reply to HeronNS]

Thank you so much...I'd be lost without all of you....you are all my 'shadow mates'~!!!💗

[SheffieldJane]

I think there is. Maybe slow down and take stock Marilyn. Give your body time to catch up with your enthusiasm. It juggles itself to adapt to a new normal. Give yourself a chance. 💖

[Grammy80]

Thanks, Jane, I'm going to take your advice. I hopped back on because I'm having some pain in the right temple and I was looking to see what the responses had been. 💗

[PMRpro Ambassador in reply to Grammy80]

Actemra does not always work 100% to get patients off pred - for about half it gets them to a much lower dose of pred but not off altogether. Rheumies MUST remember this and be patient even with it. There are different mechanisms underlying the inflammation - and only one of them is controlled by Actemra.

[Grammy80 in reply to PMRpro]

Thank you....the more I read about what all of you have been through...the more I understand. It seems like my body is my best guide. I still have that 'new' headache over the right temple. I think I will call his office tomorrow...I would much rather go slowly for sure. 🌸🌸

[GratefulBailey]

I was also going to post a question today about feeling “off” after a dose reduction (I’ve also been on weekly injections of Actemra since the end of October)...and some of my concerns have been addressed in the above posts. I was down to 10 mg for a month after starting Actemra in October; tapering to 9 was ok (yes, a few days of feeling “off” but ok after that) and have been on 8 since mid December. I tried 7.5 at the beginning of January and lasted 3 days; tried 7.5 for 1 day last week (DSNS) and headache, some eye pain returned. After 3 days back to 8, I’m good today. Nervous about going to 7.5 again on Wednesday...

[Grammy80 in reply to GratefulBailey]

I'm walking right along with you thinking the same things. I know the Docs are far more educated than I am about side effects but I don't see getting off methylprednisolone (in my case) as the 'end-all goal', I would think it would be control. We have GCA and it is part of us so how about enough steroids to keep it in its place. This forum has helped me tremendously....it has helped validate some of my 'gut' feelings and given me more peace. My blood sugar goes up and down...but it doesn't stay up. It isn't an easy road, Bailey, but being here lets you know you aren't alone....and they have reassured me I'm not out of my mind~!🤦‍♀️💗.....at least not yet~!

[GratefulBailey]

Thank you so, so much. I’m going for more blood sugar testing....such a worry along with everything else....

[Grammy80 in reply to GratefulBailey]

Every so often now, I test mine in the morning for about a week. It is crazy...this past week it ran the gamut of 149 to 89. It was normal more often than not. The last physician I had wanted to put me on Metformin "if I wanted it"...no thank you, not unless I NEED it. I do watch my sugar intake. Take good care...🌸🌸

[GratefulBailey]

Thank you! I’ve been watching sugar intake as well, eating less carbs (and when I do, make sure they are whole grain/complex carbs), limiting fruit...doing all the “do” things. Shall see what the numbers are...