Just reporting in ...

[LemonZest11]

Hi Everyone,

Don’t know if you remember my swinging pred up/downer after a flare and great advice from the experts on here. After a couple of weeks since last post, I thought I should report my progress. Went up to 10mg pred after mucking around with tapering and small increases. DorsetLady suggested a blast of 10 and I did that for two weeks. All good. Blood test showed CRP back up at 57, but my GP and I think that might be coming down from the flare, she said CRP tends to lag behind. I love my GP, so supportive and she listens to me, unlike the Rheumatologist I sacked. At my GP appt yesterday, we agreed that I have been too anxious to reduce the pred and so now we plan that I will reduce when it feels right. So I’m on 9.5 now, wait and see, and then 9. My GP has given me the paperwork to have full blood tests ... EVERYTHING, and a bone density in January, after which I will see how things are. I have my head in a better space about my muscle reduction ... starting low weights, 1.5kg with lots of reps. GP suggested this, checked with physio son and he said the same. Go until if feels enough but not over the top. Low weight with reps will do the same (better) than a few higher weights. So it has been challenging giving in to the disease, I am blessed to have all of you, a GP who listens, and a son who is a physio. Thanks for listening, I understand that this might take a while. PS ... no “I told you so” posts please. I am contrite!! Xx

[PMRpro Ambassador]

I told you so isn't appropriate - why should you have known? And even when we tell you something - why should you believe this load of (mainly) women on the internet?

The only thing I WILL say is it is probably better to not start your weights with lots of reps - "Go until if feels enough but not over the top." is fine for healthy people. Not us. One of the problems with PMR is that your muscles DON'T tell you they've had enough until it is too late. Start well below what you are aiming for and do a session, assess the next day for any sign of DOMS. If you are OK add about 10% (reps, not weight obviously). Next day, assess. Rinse and repeat until you just feel it next day and then either go back a step or remain at that for a while before trying more if you want to. It will only delay your top level by a week or two - but it may save you spending weeks with muscle pain from overdoing it to start with.

You have a lot to be thankful for!

[LemonZest11 in reply to PMRpro]

Thank you so much. I’m only working now with very light weighs. I hear you and I am taking notice.

[Blearyeyed in reply to LemonZest11]

Totally agree with the point about weights.

Light Weights and held Yoga forms can help with Osteo and RA recovery , but can cause autoinflammatory responses in PMR ( especially the shoulders ) , Fibro and any issues that can affect the Connective Tissues and Joint Cartilage.

Aquafit , Nordic Walking and Exercise which is fluid like Tai Chi and Pilates is better creating resistance muscle strengthening without causing the drag or pressure on the joints and pain points .

My Physio is Specialised in Autoimmune, Fibro and Connective Tissue Disorders , and he has given me advice that was very different from the previous Physio I saw before whose Specialism was Rheumatoid Issues and OA. Particularly avoiding any weights , even light ones, until my steroid dose is lower and I have spent many months doing regular muscle strengthening and flexibility exercises .

[jinasc]

I do not have anything to add to PMRpro's post except this...........I don't know if you realise that your oxygen supply to your muscles is impaired. So go carefully with those weights.

[DorsetLady PMRGCAuk volunteer]

No need to be contrite ... we’ve all been there.. people in glass houses and all that! 😂🤣😂

[LemonZest11 in reply to DorsetLady]

Thank you so much. Xx

[LemonZest11]

Reporting back 24 hours after light weights. All good. I will leave it today, only doing weights 3 times a week. Fingers crossed that I can start to rebuild a bit of strength. Thanks for the supportive/helpful advice, I really do appreciate it.

[LemonZest11]

Nearly two weeks and I am now on 9mgs pred. Continuing with very light weights and feeling OK. The best time of the day is in the afternoon, I feel absolutely strong and bulletproof, but I am resisting that euphoria and staying to the plan to reduce .5mg at the time it feels safe. I hope everyone is doing well and thanks for being part of the PMR community.