I was first diagnosed with PMR at the start of lockdown and the euphoria triggered by pred was amazing but since then 3 attempts to get below 7mg haven’t succeeded. I walk my dog daily for about 1 hour so I don’t understand why my legs feel so weak. I am in a constant battle with tiredness but I don’t sleep very well and the bags under my eyes are more like suitcases. My GP is very good but hasn’t referred me - perhaps because I’m a text book example of PMR?
Thank you all fellow sufferers and individual experts without whom I would be feeling very isolated😊
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AnniesRyder5
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sounds to my reading here that you may have gone too fast down on the dose that is right or that you are at the level where your adrenal gland kicks back in and apparently a difficult stage to manage. Others who know more will comment I am sure. An hour for a dog walk may have been ok before but too much now. I'm a newbie and yet to begin reduction so hope yours works out ok.
I am currently reducing by 1mg per month and I’m trying ( I know I’m very trying!) to keep up the dog walking because I’m worried I’m losing leg muscle or tone or whatever.
To be honest it’s my appearance that worries me as much because the circles around my eyes are so dark and I know I look ill!
I had a Zoledronate infusion 1 week ago and I must admit that I had awful flu like symptoms for 3 days after it, which is apparently a common side effect. But I’m thinking that is not the reason for weak legs and zombie like appearance !😞
Something isn't quite right and sure others may be able to offer insight with rings and possible drug combinations. There are 2 things happening with your legs. Exercise on weakened muscle, a result of pred. will produce lactic acid which needs to clear. PMR is working to stop that as it restricts the blood from doing this. At your level I guess inflammation is mostly suppressed so should be clearing. You've also lost muscle so your legs feel the work you make them do more if you keep doing the same routine. I'm also losing muscle but will have to build back when I am able. Others know more so hang around and someone more knowledgeable will be here I'm sure to help.
I know I repeat this virtually every time I post on here, but my self -description is “toxic jelly”... which I have experienced ever since starting Pred a year ago, since when I have reduced from 60 to ( currently) 15mg. Three months ago Methotrexate was added ... wobbly weak legs got even worse ( six weeks ago fractured an ankle, no fall, leg just folded as walking along). It’s a bugger. Like you, try to keep active to keep some muscle strength but no idea what the real balance should be... x
No, because the fracture hasn’t been linked to GCA/Pred. Just come under X-ray/ fracture clinic. However, I have my first consultation with rheumatologist in a few months on Monday, and after reading the Dexa conversation on here in past few days, I thought I’d venture suggesting it?!
Don’t waste anytime - ring your GP & ask for them to arrange one ASAP especially if it can be done before you see the Rheumatologist…..Any history of broken bones before or history of Osteoporosis?
Or are you seeing him on Monday? It’s not clear in your reply. Or you could ring your Rheumatologist & tell him what’s happened as he could expedite a DEXA Scan
No time, as I’m seeing Rheumatologist on Monday - I’ll ask her then if she can authorise a scan. She doesn’t yet know about ankle fracture of course. No, no history of breakages or osteoporosis hitherto
But did fracture clinic not pick up on the pred? I know the ankle isn't really a typical osteoporitic fracture but if it really fractured that easily it should be investigated.
Yes it really is a fracture, I saw the first x-ray myself. The second one, done two days ago, wasn't shown to me but I was subsequently told it "looked as though it had mended/was mending". No, I mentioned the Pred as my theory as to why my legs were wobbly, and as a possible reason for an actual fracture as opposed to just a sprain - they didn't really seem to respond. I was too concerned with trying to get the right sized physio boot to notice that they didn't seem to take notice.
Do you mean by asking for a scan? Otherwise, I've been promised a physio session that will take a couple of weeks to filter through...as I say, seeing consultant on Monday and will go with pad and pen and, one hopes, remember to ask Sensible Questions...hope you are ok, PMR Pro.
It is normal to do a dexascan for any woman who is menopausal or older and has a fracture that couldn't be put down to commensurate force. Just in case.
No - smiley faces and acquiescence get you nowhere. Never put make-up on and don't hold back if the tears come. That is what makes them move - they usually feel guilty! Had to bite the bullet myself this morning about something else!
Oh yes! If l leave the makeup off, l’m lucky not to get admitted to hospital! Tears work so does bringing in My Minder as my previous GP used call my Husband!….
Yes I recognise all of that. Poor you. (Don't know if I can follow PMRPro's advice and avoid the make up, mind you... the moonface is bad enough, feel I have to put a bit of definition around what's left to see of my eyes...Oh dear, vanity dies hard....)
You are never reducing relentlessly to zero - you are looking for your lowest effective dose, the dose that manages the symptoms as well as the starting dose did. It will be higher in the early days - but 7mg by now is not bad at all. And the fact it went pear-shaped at 7mg 3 times suggests that is the dose you are looking for for now. It doesn't mean you won't get lower - just not yet.
People seem to cotton on to the idea you need to go slowly - but that doesn't guarantee you will get to zero at your first attempt. However slowly you go, nothing will get you past that lowest effective dose. It makes it easier to get there without feeling rubbish. The lower you get, using smaller the steps may help and will certainly get you closer to the dose you need - even half a mg can make the difference between being OK and not.
this info is so very helpful. I managed to get from 20 pred in April to 11mg in early June but had an almighty flare and was then given other ideas about tapering. My GP had me cutting the dose every two weeks after an initial month on 20mg. Crazy. Have read much here about tapering and now going much more slowly. Restarted at 15mg and then reduced to 13 after 3 weeks and was ok on this after a bit of a rocky start, but no pain, brilliant. Dropped to 12mg 4 days ago but feel awful, shakes, depression, tears...you name it and stiff hips again. So, as it's my 70th birthday this week i've upped my dose today after 3 days on 12 back to 13 and hope this will level out again. Am now going to drop more slowly, at least a month, maybe 5 weeks on each dose and try and follow the slow taper plan which I have read about from 'dorset lady'. Had thought these kind of problems really only started after you reach 10mg and cut from there but seems not, we are all different. Just hope the slow taper works. It is so very useful to share information with everyone, had begun to think I was a head case with all the tears and the awful shakes (my husband tends to leave the room i'm afraid). I was an avid walker but now realise rest days and little and not always as often for the moment is best. Just hope it works.
No - I realised there were people who can struggle at above 20mg and need a very small step down.But persuading the average doctors of that can be an interesting experience!
Every time I taper down, I would experience extreme tiredness. Once those tiredness went away, I would stay on the tapered down dose for at least a month.
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