Started on prednisolone in March 2019 and pmr was managed well, apart from needing to go up a little after vaccinations. The bi valent covid booster in Oct '22 when down to 6.5mg or so kicked my immune system it seems, so had to go back to starter dose of 15mg unfortunately. See previous posts.Using slow taper am now halfway through drop from 9mg to 8mg and no return of symptoms except back and hip discomfort and helped with paracetamol.
It happened also on last drop but eased so decided it was body catching up. It hasn't eased yet. I have been seeing a very experienced physio since summer because of disc problems. ( Also recently ct scan revealed 4 or 5 compression fractures in spine...mainly minor). The exercises helped a lot, both sorting my back and building up muscle strength gradually. Could it be that the repetitive exercises, although gentle are causing this discomfort again? I have stopped them until I see physio tomorrow. He understands pmr and is aware of pmr withdrawal pain.
Any thoughts from those with experience please.
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Sounds as if it could be a bit of DOMS as it’s helped by painkillers… but as you say PMR doesn’t like repetitive exercises… hope you get some help tomorrow.
Thanks DL. Would dropping ie pred withdrawal give one the old injury symptoms of pain and would that be helped with paracetamol? My physio will give me a thorough check tomorrow and we can decide which exercises or even none are appropriate After saying I am not feeling any other pmr symptoms, I am feeling a bit more wiped out each day so I think I will slow this drop down and repeat week 3 or go alternate days 9mg/8mg and see how it goes.
I’ve replied further down about tapering - stop current one , and then try 9/8.5mg . …but maybe don’t be in any rush … perhaps stick at 9mg for my other few weeks, until things settle.
Higher doses of Pred do mask other pains- so sometimes it’s difficult to know what is what…
DOMS is an internationally recognised medical abbreviation. Often if you see one like that on the forum you can use google - write the abbreviation and medical and search, often works well.
I didn’t have PMR but my Pred muscles certainly didn’t like repetitive movements. Sounds like someone hands on like your physio needs to help put the pieces of this puzzle together.
Feeling wiped out could be the Pred getting low enough to not satisfy your normal cortisol needs. If your adrenal glands haven’t woken properly yet (likely on this dose) you’ll feel like there’s nothing in the tank.
Thanks SnazzyD. You have helped me more than once. From what you are saying, it would seem a good idea to slow down the drop, regardless of what we decide tomorrow. I am struggling more the last few days.
Oh definitely. I found 0.5mg drops were more than enough and each one took weeks to do from the fatigue, fleuy aches and general lowness alone. 7-5mg was the absolute worst because the dose was too high for the adrenal glands to get the memo but too low to give me enough whizz to live a day and a dull one at that. I slowly pushed through and came out of it to more better days. We are all different and you’ll soon find out where you are with this bit of the recovery. At your level I was doing 0.5mg over about 4-6 weeks. The lower I got the slower I got and in the end I was at 14 weeks at one point. It’s very individual and if you are a ‘slow one’ it’s a bit of an insult to be so close to zero and yet so useless when under 10mg is the sunlit path to freedom! Faith and patience for all things adrenal.
This is really helpful. It would seem sensible then to be aiming for 8.5mg daily, I guess.Now I need to decide ...either to go alternate days with 9mg/8mg or start back into DL slow drop week 2, but going old dose 9mg new dose 8.5mg.
I seem to remember comments on this site that alternate days route wasn't always the best, so week 2, 9mg to 8.5mg it is. I have plenty coated 5mg, 2.5mg and 1mg.
Thanks PMRpro. Your opinion always valued. As DL says, perhaps go back to 9mg till things settle. No reason not to really. What is freaking me somewhat is the osteoporosis worsening and the compression fractures.I am taking vitD3 supplement. My calcium intake is good. However, the doctor is advising alendronic acid. As anything in my digestive system gives me problems (although the gerd has settled down, so reducing omeprazole) she has referred me for a telephone consultation with a rheumatologist as apparently they can prescribe alendronic injections.After reading a link on here to some research on this matter, I am not convinced that bisphosphonates therapy is better than vit D3 with K2.
It isn;t alendronic acid in the injection - it is a different bisphosphonate, zolendronic acid, an infusion once a year, or it may be a monoclonal antibody, denosumab also called Prolia, which is a subcutaneous injection every 6 months. If you have gastric issue - definitely NOT alendronic acid.
It IS better in that it makes the bone slow down its turnover - bone is constantly being broken down and rebuilt. However, a bisphosphonate is likely to stop it getting worse - Prolia is better if the need is to INCREASE bone density as it leads to bone density building.
If you want to discuss it, call the ROS Helpline who have expert trained nurses to explain the options
Many thanks indeed PRO. You are amazing, a mine of information. I have had a brief look at the ROS site and will certainly look in more detail tomorrow. I can access their helpline also.Re treatments this valuable information will help a lot (if and when) I get a telephone appt with an NHS rheumatologist. I am inclined to look for one privately, as I did last year when I was waiting for an NHS telephone appoinment with an endocrinologist.
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