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Feelings when tapering: My journey
I have been taking Prednisone for 6 weeks now, started on 15mg and massive improvements once on 12.5, walking well, using light weights for training and just feeling brilliant. Started on 10mg last Monday and on the Wednesday I felt a little unwell, put it down to change in weather. My left shoulder started hurting more and by the Sunday I was aware my left hip was saying hello but of course this is nothing like the disabling pain I had at the start of all this. I did read somewhere that it can take a week for the body to get used to a reduction in Prednisone but I also have this feeling my body is just waiting for an excuse to flare up. Pretty sure if I phoned the Dr. a blood test would not show any reason to worry so am I just being paranoid. I also lost my appetite and had to force myself to eat and that is similar to when my PMR was at its worst. I use a tens machine on the shoulder so I can get on with dog walking etc. I guess I just want to know if this is something we have to get used to.
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Well, what is this I'm being given 20 mg. For 5 days then 10 mg. For 5 days, then off? Last month I was given 40 mg.. for five days...then no taper! And has anyone else suffered severe diarrea will on Prednisone or while tapering?
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2 ReactionsYour treatment sounds unconventional to me. Maybe read this new post.
https://connect.mayoclinic.org/discussion/pmr-and-prednisone/?pg=1#comment-1143766
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or the following:
"Joint guidelines from the European League Against Rheumatism (EULAR) and the American College of Rheumatology (ACR) conditionally recommend starting corticosteroid therapy with 12.5-25 mg/day of prednisone or the equivalent. [30] A systematic examination of the peer-reviewed literature, which included 30 studies, found that most patients seemed to achieve remission of PMR with a starting dose of prednisone at 15 mg/day. A slow tapering of the prednisone, less than 1 mg/month, was associated with fewer relapses. Once prednisone is tapered to 10 mg/day, a further slow taper by 1 mg every 2 months until treatment discontinuation was associated with optimal control of disease activity. [43]"
https://emedicine.medscape.com/article/330815-treatment?form=fpf
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3 ReactionsWhat have you been diagnosed with? It doesn't sound like treatment for polymyalgia rheumatica. Short term pulse dosing of prednisone is given for all sorts of things. It can be given in a high dose then dropped and discontinued quickly without the need for tapering if it is done in less than two weeks.
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1 ReactionI take my turmeric supplements and 2 extra strength Tylenol at bedtime and those help me sleep well. Then when my dog awakens me in the am, I'm hurting but able to move with only some stiffness, and I loosen up with coffee and the am routine.
I was diagnosed with PMR about one year ago. I started at 20 mg of Prednisone and my Rumy had me tapering down to 5mg in about 3 months. I had 2 flair ups during that time and to increase my dosage back to 20mg. I have a new Rumy who started me back at 20 mg but reducing to now 6mg over a 6 month period. I reduced 1 mg at a time on my own schedule depending on How I felt. My Rumy also prescribed me on methotrexate which also helped me from having flair ups. So far so good.
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1 ReactionActually yes abd never context the issue. Thanks.
Yes I had bouts of diarrhoea with every taper alongside of nausea and headaches
Stopped finally after 2 years and have been told it will be months as my body recovers I lost all my muscle strength and have discomfort but just working on gradually building it up
I know prednisone is a very helpful drug but I had such adverse side effects it is written in my medical notes not to prescribe it for me unless I have a life threatening illness that requires it
Tapering off it and now recovering is a journey all good wishes to you as you taper
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1 ReactionGiving my body time to adjust
Last week I was feeling good and did a Good Friday challenge. Height of Mount Snowdon on a stair master and sort of enjoyed it. Tapered to 7mg on Monday and did usual swim, gym and dog walking and thought I might do a challenge on Wednesday. Swim, spin bike and then a curved treadmill and anyone that has used one of those will understand I was pretty exhausted afterwards. Felt a bit tired on Thursday but went to the gym and just did weights and felt awful after. Had a think about it in afternoon, was it just my body saying should have rested silly woman or PMR saying I am here you know. Quite obvious now on Friday morning 5th day of 7mg and feeling back to normal. I should have given my body more time to get used to the 7mg so lesson learnt, next time I will wait 5 days after reducing to do a challenge.
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4 Reactions@tiateacake, Our body does definitely remind us when we have too much fun 🙃. For me, it sometimes falls on deaf ears and fun takes over.
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1 ReactionFirst week of 7mg all done and I have noticed one very big change. Once I started using pred I became very tired by 1pm and was normally in bed by 4.30pm and my Dob adjusted very quickly to this so long as she could share my pillow. Asleep by 6 then up at 2.30am and of course Dob was more than happy with this. But this week I have been able to actually go out in the afternoon and go to bed later. Only problem Dob of course thinks or wants to get up at 2.30am. I am sure she will adjust again in a few days and stop standing by the bed with squeaky ball in her mouth. That tired feeling did seem to go on and on but hopefully that phased has passed.
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