Quick update and my usual questions to follow 🙄.....
So, I managed to get through my two weeks on 15mg and tapered down on to 12.5mg where I will stay for a further 2 weeks (until the 16/01/24) using the 3 tablets 1 day and 2 tablets the next set up. .....(couldn't get a pill cutter quick enough and no 2.5mg tablets available)
To be honest.....I had one dodgy day since starting this taper down but on the whole, things have continued to be largely positive.....my hand pain has virtually gone bar the morning, shoulders remain painful, but this seems to be out stretched to my side and when at around 70 degrees through to above my head where the pain isn't there.....pulling motion also is a bit painful too....like if i try to pull a heavy door. Shoulders and neck click a lot.
Hips are achy when moving and right hip clicks a fair bit.
Managing to do around 10,000 steps daily and sticking to a low carb diet......one issue was a huge weight gain after Christmas of over 8kgs where I didn't watch anything I ate and ate anything that moved followed by a 4.5kg loss this week on low carb with lots of walking and zero alcohol......I am trying intentionally to lose weight but I think 4.5kg seems HUGE in a week so I need to monitor what's going on there ....
Had a FULL day on Wednesday in bed.....that seemed to have a very positive effect on Thursday and today so I think rest I'd still something I need to factor in.
Overall I am massively improved but I've noticed a couple of things I have questions about:
Leg and arm twitches continue involuntarily, especially when resting and I do feel a bit shaky and jittery at times.....I have asked about the twitches and I wonder if i should mention this to my GP now?
I have been prescribed AA but am not sure whether I should start them or not.....
I have a final appointment at Benenden next Saturday.....I have £1800 left to use up there....should I be asking for any scans or anything? My shoulders DO feel weird and the range of movement pain has never really gone.
I do feel fatigued at times, even on Pred, is this normal?
I have noticed I have a shaky little finger....by that, I mean when I outstretch my right arm in front of me and splay my hand out, my small finger tremors involuntarily.....again, could this be due to the condition or the medication itself? Should I inform my GP or Rheumatologist?
Finally......(promise 🤣) I have also been prescribed Calcium Supplements with vit D.....should I take these or should I steer clear?
Hope you all had a lovely New Year......posting in case anyone finds this useful.
All the best
Paul x
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Paulx222
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A lot of the weight gain and loss will have been fluid - carbs and salt are both poison for fluid retention when on pred and I bet your Christmas food had a fair bit of both.
Will Benenden fund a dexascan?
Some of us have had the twitches experience - doctors look baffled but it usually improves over time as the PMR calms down a bit.
Caclium/vit D is standard. You may be fine with just that and no alendronic acid - depends on the dexa result. If you end up taking AA then you will need the supplements to reduce the risk of low calcium levels.
Fatigue is part of the autoimmune disorder - pred is a management strategy for the inflammation and symptoms. It does nothing for the actual disease process.
DON'T pull heavy doors!!!!!
Mention the individual points - they'll probably look at you as if you are mad ...
Thank you as always......and as always.....it's like you're behind me watching!! Pretty much my Christmas was exactly as you suspected .....I certainly wasn't following much of a healthy diet.....so yes, hopefully it's just 'stuffing my face syndrome' bit I'll keep checking at Slimming Club Weigh In.
Yes......can't wait to mention these points at Benenden next week 🤣🤣 but at least I'm not as mad as him with his 30mg - 0mg in 6 weeks!!
It’s great you’re seeing an improvement. From now I’d slow down, don’t overthink it, give your body a chance to deal with Pred and PMR and give the Pred a chance. I’m a bit worried about the helterskelter reduction plan, but cross that bridge if you have to.
Your massive weight loss is likely fluid loss. I was incredibly sensitive to salt when on Pred and Christmas foods are not exactly salt free, even the sweet stuff.
If you have money left over, have a DEXA scan to see if you need bone meds. It also shows you what state your bones are in before you get too far down the road on Pred to know. If things are good, possibly no AA needed. If they’re not, you know it wasn’t the Pred wot did it. My bones weren’t in the best shape but it was good to know it was not the Pred but my vitamin D levels had been very low for years. I know that high dose Pred lost me a further 3.3%, not 13.3% as it would have seemed 3.5 years down the Pred line!
Many thanks.....'don't overthink it....' sound advice.....I still am doing that 'Is this really PMR ????' thing......and it's not helpful.
I'm massively improved and two Rheumatologists have said they believe it up be that.....
I will try very hard to convince my private specialist to give me a dexa scan and see what he says.....if not, I'll ask my GP.
My tapering plan now is
2 weeks 12.5mg
1 month 10 mg
Then every month going down 1 mg
Seems a bit better than 30-0 in 6 weeks. I haven't had much deterioration in pain etc despite dropping down to 12.5mg which I suppose is pretty positive!
Just remember your tapering plan is just that - a plan… It’s not set in stone, and can be adapted- and unless you are very lucky and out of the ordinary it will need to be.
Life has a habit of throwing in a curve ball along the way… and whilst you and your doctor can read the plan, your illness cannot.
It is a LOT better - but it is still a bit speedy at the start which bothers us a bit! However, once you are at 10mg don't be in any hurry to get lower unless they start to push you. One leading PMR expert and a student of his did a paper on tapering which reduced the rate of relapses from 3 in 5 to 1 in 5 - which I take as pretty impressive. The student is now a Professor at Luton, specialising in GCA, and she still uses their taper because it works. It keeps patients at 10mg for a year and I think that is the secret to the good results - they aren't forcing lower doses at a stage the PMR is still pretty active.
I especially find that they consider bursitis to potentially be an underlying cause to be absolutely fascinating.......I had bursitis in my left elbow which led to cellulitis around four years ago and a lot of the tendon in my arm were eaten by the infection
Fast forward to Feb last year.....bursitis this time in the right arm with pain.....attended the GP, gave full history of left arm trauma and still was sent packing with some Naproxen and his best wishes.
Seemed to ease off a bit
Fast forward to around a couple of weeks before the shoulders went bananas and the elbow bursitis in my right arm was back!!
I was 51 when my PMR started too but not diagnosed until nearly 57 - but I too was still improving after 4 weeks and it must have been 2 or 3 months before I went down to 12,5mg,
well done it seems to be heading in the right direction , I have just tapered to 22.5 and all is good so far. My heart failure meds were a mess after another visit to A&E a change meds looks to have worked. Let's hope we both have a good 2024
Hi Paulx222! Delighted to hear of progress. Don't forget to write your questions and concerns down prior to your consultation - and have a pen to hand to jot down the response.
Regarding the Leg and arm twitches, I had it so much in the beginning that they thought I had ALS (checked me twice). My experience after 4 years is that it comes when moving too much. in generel, not the affected limp. So I suggest you setledown with the 10000 steps an see if it approves in a weeks time. Higher dose pred. did not help me, and astma inhalation makes it worse. I also had the little finger I videoed it to show it to the doctors as they did not believe me.... then they overreacted
Are you taking methylprednisolone (Medrol) or prednisolone?
When I was first diagnosed with PMR I was prescribed methylprednisolone. I was unaware methylprednisolone was giving me the shakes/tremors until I was switched to prednisone due to it constipating. Although on prednisone the constipation is still there where stool softeners help, I no longer have the shakes/tremors.
The box just says Prednisolone Tablets....so not sure.....I honestly can't remember if I had the twitches prior to taking the meds....looking at my diary, I don't mention it but kind of feel they may have been present before....but unsure.
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I videoed it to show it to the doctors as they did not believe me.... then they overreacted
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