PrednisoneTaper: I have been exercising daily... - PMRGCAuk

PMRGCAuk

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PrednisoneTaper

RaisinBran profile image
16 Replies

I have been exercising daily pretty much for 23 years on a treadmill or stationary bike, due to my 5 heart by-passes in 2000. Since getting PMR I can exercise without any issues but find I suffer from muscle pain and soreness for the remaining of the day. Are there any ideas out there that would give me a bit cardio daily without suffering for the rest of the day?

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RaisinBran profile image
RaisinBran
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16 Replies
PMRpro profile image
PMRproAmbassador

How long were you spending on each dose as you tapered from 5mg? I would say certainly go straight back to 2mg immediately, after only 6 days that MIGHT be enough and if it is it will save going to a higher dose. You have to try to find out.

That taper you describe in your profile is far too fast at the end - the lower, the slower is a far better approach. You aren't tapering relentlessly to zero, you are looking for the lowest effective dose and it is rarely zero immediately. You were never at a dose long enough to be sure it was still enough - 1/2mg per month is far better at these last few mg. Apart from managing the PMR, your adrenal function must get into gear again and that doesn't happen overnight.

And a plea - please don't use your user name as a post title, write a few words indicating what the problem/question is and then once it is posted more people are likely to look at it AND relevant past posts will appear in a list for you.

RaisinBran profile image
RaisinBran in reply toPMRpro

I spent 3 weeks on 5mg, then 3 weeks alternating on 5 then 4, then 3 weeks on 4, then 3weeks on 4 and 3 and so on, from 5. This am, I felt kind of OK, did an hour of light lifting and I'm totally exhausted. I'm sorry, but I'm not sure I understand what you meant by user name. Should I not use Rain Bran?

Thank you

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toRaisinBran

Your name is fine, but as you can see from PMRpro’s and my reply, if you give your post a meaningful title it will bring up related posts, and more likely to catch other people interest if they have been through same thing.

.. and most people find below 5mg they need to stay at each dose longer, that then helps your illness and the adrenals to start working again…

The guidelines do say below 10mg - reduce by 1mg every 4 to 8 weeks - so you can see you have been quite quick. For some that’s fine, but not all….

RaisinBran profile image
RaisinBran in reply toDorsetLady

Thank you so much. I am finding this post very helpful.

PMRpro profile image
PMRproAmbassador in reply toRaisinBran

And if you want to do weights - you MUST start with very light ones and just do a very few reps to start, Your muscles aren't in a physical state to do an hour. 15 mins max to start - you have a new normal and you have to train, starting from scratch, not where you were before. You will get there but not yet,

RaisinBran profile image
RaisinBran in reply toPMRpro

I have been working with 30lbs 3-4 times per week, just arm curls and pull downs. Does that seem reasonable?

PMRpro profile image
PMRproAmbassador in reply toRaisinBran

I think that is too much to start with - and you did say you were exhausted afterwards. You need to start at a level you won't feel it after and the next day - it is a feature of muscles affected by autoimmune illness and doing too much can actually send you backwards. We don't know why but we are hoping to get a study running to investigate. And because you don't know you have to start really low - I take it you are talking about pull downs? Arm curls we say to start with as little as 1lb and work up, in fact for some we suggest 500ml water bottles half full at first and add water to increase the weight at low levels. Pull down not sure - but to be honest, since PMR affects shoulders and arms the lightest you can go would be best, If you are fine after the session you can add a bit more the next exercise day - remembering that rest days are just as important. It sounds slow - but it isn't slow when it works and you don't end up missing days because of left-over effects. NEVER exercise if your muscles are still sore from DOMS. It just stops the muscles healing to get the training effect.

RaisinBran profile image
RaisinBran in reply toPMRpro

Thank you again! I took your recommendation and started yesterday with 3mg instead of the 2mg my Rheummy recommended just in case being off of it for 6 days was too long. How long would you suggest I stay on 3mg going forward?

PMRpro profile image
PMRproAmbassador in reply toRaisinBran

Until you are as good as you were at 3mg last time assuming you weren't starting to flare earlier. You should feel as well in terms of PMR as you did at the start on the higher doses. You usually start to feel other things once you get to the low doses, especially osteoarthritis,

HeronNS profile image
HeronNS in reply toRaisinBran

You can edit your post - in this case to change the title of the post. If you click the little arrow at the end of the post (your original post above, not a reply) you'll get an option to edit, and can change the user name you used as the post title to something like Prednisone taper, or whatever. You're not changing your user name, just the post title.

I think the little arrow is beside the word More.

RaisinBran profile image
RaisinBran in reply toHeronNS

I see, thank you so much

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

agree with PMRpro- on way forward - this might help with understanding adrenals -

healthunlocked.com/pmrgcauk...

And this re post title -

healthunlocked.com/pmrgcauk...

RaisinBran profile image
RaisinBran in reply toDorsetLady

Thank you, that was very helpful

diana1998 profile image
diana1998

To give you an idea of my very slow taper under 5mg, I drop by 0.5mg every 2-3 months and never have pmr pain. Now on 2mg. I don't take any chances as not risking a flare at this stage! I'm in no rush to get to zero. Quality of life is all.

RaisinBran profile image
RaisinBran in reply todiana1998

This site has been so helpful for me. I plan on the Dead Slow Method going forward. I'm not sure how that relates to yours, have you heard of it?

diana1998 profile image
diana1998 in reply toRaisinBran

Most definitely. It's very well known on this site.

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