Just read Kate Gilbert's excellent book polymyalgia . ..survival guide 2nd edition. So very grateful for all of her excellent research and honesty ! Feel so much better informed now and more hopeful that this will pass ! even if at the minute it seems a very long way off! Update on my meds after speaking to the doctor this week. Staying 30mg for 2 weeks to see if can get pain under control, then alternating daily dose between 30/25 mg for 2weeks before dropping to 25 or 2 weeks then repeating again till down to 15mg. Has anyone else done this? Haven't been able to find any posts with this tapering. Doctor also thinks my fatigue is being made more acute due to having covid recently.
thank you!: Just read Kate Gilbert's excellent... - PMRGCAuk
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toniaell
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DorsetLadyPMRGCAuk volunteer
Personally not a fan of the reduction you suggest -the body doesn’t always like an up/down/up/down alternating regime.
If you really want/need to get from 30 to 25mg in two weeks -I would suggest you try 27.5mg first week, then 25mg the next…,and continue in that vein..but have to say it does sound a bit rushed. So therefore open to not being as successful as you’d like.
Can you put a bit of information on your profile please -as that helps us with a bit of perspective and therefore better advice for you -
PMRproAmbassador
Like DL - you are unlikely to find a seesaw tapering approach here because we think it is too hard on the body when it is as much as 5mg switch. Get a pill cutter if you have plain pred tablets and cut a 5mg to get 2.5 and do 27.5 every day. Many people will manage 2.5mg steps down as far as 20, maybe even to 15mg but don't be too surprised if you struggle because many do. The recommendation from top experts in tapering is not more than 10% of the current dose - so about right to 20mg. From 15mg 1mg at a time is FAR better and more likely to work.
You guys are amazing thank you! I was wondering how on earth you halved the pill. You obviously have been asked that before too! Ordered my cutter and will do what you suggest thanks agian. Will let you know how I get on .
Some people manage with a sharp knife but a cutter is easier. There are a lot of versions, some better than others. And I and my husband had the same model, from the same pharmacy - I can use mine no bother, I thought his was useless but he managed with it!
Funnily enough, I was going to ask about this alternate day tapering. For the last three weeks I've been tapering 7.5mg and 6.25mg on alternate days and so far so good. I was going to continue for a month like this and then drop to 6.25mg each day and stay on this dose for a couple of months before trying to reduce further. I can't get 1mg tablets so I cut the 5mg into quarters. Do you think this is too hard on the body?
If it is OK for you then not - but the other case was a change in dose of 5mg - 4 times what you are doing. And at a stage she is likely still to be a bit delicate.
Thank you PMRpro,much appreciated.
I agree with the others about the reducing taper. You can get pred in 2.5mg and 1mg tablets. You can also get coated ones that cannot be cut. If your tablets are not white DON’T try and cut them as they are enteric coated.
Similar, doing alternate doses for 2 weeks, but then the lower dose for 4 weeks. Previously I had been stuck on 10mg for approx 18 months. Now on 8mg, aching a bit but tolerable, so will have to see what happens when I go to 8mg/7mg. There are many methods of reducing out there, but my consultant is extremely experienced so will take his instruction. Also been prescribed 10mg of amitriptyline but can't cope with the side effects of that so stopped taking it. Good luck, & although I have learnt quite a lot about PMR must get the book!
Mmmm - but is he experienced at tapering pred himself? A couple of people have rheumies/GPs who have been on long term pred themselves and they have very different perspectives!
I don't actually know, probably not, but he has experience of numerous patients; hundreds. I've no doubt if this isn't working he will suggest something else. He said to see him again in 3 months (now 3 weeks) time with a blood test & we will reassess. He could change things. I'm thinking having read a few posts on here that everyone is different.
Yes everyone is different, but 3 months is a long time if things aren't working..... and if he's so experienced how come you were stuck on 10mg for 18 months...
Or was that before he was treating you?
It is working in that I can function (although I'm not using my rowing machine) as I do still have symptoms. Being on 10mg of Pred for 18 months plus was not doing me much good. It was before he treated me.
Ok…but what symptoms do you still have?
Mainly muscle ache/cramp at the back of my thighs. This varies in intensity & usually at the beginning of the day but sometimes later if I've been sitting down for sometime. Overall I sometimes feel bit below par. Headaches, dizziness sometimes on standing & I have an on going balance problem from a virus which damaged one of my ears awhile ago.. Whether this is all PMR related , the Preds or other reasons is difficult to diagnose. I probably drink too much alcohol but this helps me relax at the end of the day. I've been told to cut the alcohol by 50%, reduce caffeine as much as possible & drink lots of water - drinking loads of water is the most difficult! 400g of B2 daily seems to have got rid of the migraine type headaches. The preds have weakened my leg muscles which doesn't help my balance.
"The preds have weakened my leg muscles"Or it might be the PMR itself - pred always gets the blame though! The cramp at the back of the thinghs sounds as if hamstrings are involved in the PMR perhaps?
Time flies, your reply was a month ago. It does feel like hamstrings. At the moment my dizziness has subsided which makes a lot of difference. I'm down to 7mg Pred & the consultant has asked me to get in touch with him when I'm down to 5mg. Every time I move down 1mg my leg pains start again but over a month calm down. I'm wondering if there will be a point when I can't move down further. If my adrenals are not producing enough Cortisol at what point might I become aware of that & what will be the feeling? Is there anything I can take to help the adrenals?
No - the only thing that stimulates them is a low level of pred at midnight. Have you tried one of our slowed taper plans and doing 1/2mg at a time? It may just be that 1mg all at once is simply too much and your body is protesting about it
Thank you, as per a previous post, I'm doing 7/8mg for 2 weeks then 7mg for 4 wks & so on. It's been not too ad so far but if I NEED to go slower no doubt I will. Why at midnight?
Because that is the point of the circadian rhythm that signals to the HPA axis (hypothalamus, pituitary, adrenals) that cortisol is required next morning and to start producing it, It is a long and complex process involving a load of organs, glands and substances. If the level at midnight is high enough - it won't flip the switch to start it,
Thanks for that, it sounds extremely complex.
Tehe - it's probably why so many doctors aren't very good at physiology!!!!!! It sent them to sleep ...
Something I wanted to ask someone about but never have. Prior to my PMR symptoms - I was tearing up some large cardboard boxes, shortly afterwards my left wrist started to ache & then became worse over a few days. I went to see a hand surgeon who said I had carpal tunnel syndrome, which I have had before but calmed down over time. This time the aching/soreness spread to around my shoulders & the hand surgeon saying he only dealt in hands, sent me to a rheumatologist who diagnosed PMR.
Carpel tunnel keeps popping up in reference to PMR (p95 in Kate Gilbert's book) but do you know what's it's relevance?
It does occur more often in patients with PMR - probably the same inflammatory process. Same with bursitis - more common in patients with PMR. But you can have both as problems in their own right,
Somebody asked me if had tried Low Dose Naltrexone (LDN) to help with Polymyalgia Rheumatica. I asked a rheumatologist about this & he said it was useful for Lupus but not PMR. Does anyone know anything about it or anyone who has tried it. I'm presuming if it was useful we would all know about it & be using it?
There was a post from someone just a few days ago.
healthunlocked.com/pmrgcauk...
Sarah Mackie wasn't greatly enamoured by the information she had found and it isn't easy to get in the UK - only one compounding pharmacy that produces it, It will only be available privately.
I didn't even know it was useful in lupus ...
I'd be grateful for some advice please. I've been tapering from 10mg & have been on 7mg now for 5 days. It has not been easy & this morning finding it difficult to walk first thing. Things normally improve as the day goes on but since I've been on 7mg things have taken a bit of a down turn. Is it time to up my dose of prednisone & if so by how much?
When you say "tapering from 10mg" what do you mean? Not directly from 10 to 7mg I hope? 1mg at a time is more than enough now - and if you have gone from 8 to 7 then go back to 8mg and see if that is enough - caught quickly it may well be.
Quickly taken 1mg more! Was on 10mg for aprox 18 months. New rheumy said I needed to reduce - 9/10mg for 2wks then 9mg for 4wks & so on. Did 8/7mg for 2wks with slight change in symptoms then when I've gone to 7mg symptoms worsened & today considerably worse. Had emailed rheumy's secretary a couple of days ago but have had no reply back yet, hence my shout for help!! Thank you, l will see how I feel after a couple of days. What if it doesn't work, back to 10mg for a short while & then taper down to 8mg again but maybe more quickly? I thought I'd be going down to 1mg & be out of here! I think one of the big problems for nearly everyone Is not being able to see the end, or that's me anyway.
You did need to try reducing. But no MUST about it. That wasn't too bad to be fair - a total of 6 weeks to drop 1mg is acceptable, But then it sounds as if you jumped? Did you not do 9/8 for 2 weeks before dropping to 8 for a month?
Below 10mg more than 1mg per month is almost always too much. and from experience, the lower you get, the slower you need to go for success.
The pred cured nothing - even 18 months at 10mg. You are tapering - titrating = the dose to find the lowest effective dose for YOU and no-one can predict what that will be. It may be 9mg, it may be 1mg. If you are very lucky you might be in the maybe 1 in 3 whose underlying cause of PMR has burned out in 2 years. But most of us need more for longer - and you don't know where you are on the spectrum.
Profs Kirwan (originally) and Quick (now) kept patients at 10mg for a year before continuing the reduction - and it reduced the rate of flares from 3 in 5 to 1 in 5. Can't be bad. I think it was because they weren't pushing patients to reduce in that first 18 months where flares are common as the disease is still quite active. The more you flare in that first couple of years the harder the journey becomes trying to reduce the dose. More haste, less speed.
rcpe.ac.uk/journal/issue/jo...
Yes, I did 8/9 mg for 2 weeks, then 8 mgs for a month. 7/8 mg for 2 weeks, then 7mg for a month which is where I'm now having the problem. So it would appear below 8 mg I need to go slower. Maybe 7.5 for a month then 8mg for a month. Trial & error I guess. I do want to take more exercise though as my leg muscles mass.
That's OK then. But it doesn't matter how slowly you go - you won't get lower than the dose you are aiming for: the lowest effective dose.
I went back to 8mg but still very painful mostly around back of thighs so today gone right back to 10mg. It would appear that after 8mg I'm having problems. How fast/slowly would you suggest I go down back down to 8mg & what after that. The pain in my legs is more incapacitating now than when I was first diagnosed with PMR - worst in the morning before I start to move around but then can go for a walk, but returns after I've been sitting for a while.
It really is impossible to say - it is possible you have a flare and need more than 8mg at present and the only way to find out is to try less and see what happens.
Oh & I do go have periods when I feel extremely tired which I can usually get through if I've got something to concentrate on, or otherwise nod off for 30 minutes & then feel fine.
Sounds more PMR ish to me —-as for alcohol-for some it makes a difference, got others not. Many say it does help them relax at the end of the day -and I guess it’s all a matter of how much,
Must admit I did give it up early days when I had GCA partly because of the high doses, partly because of sight loss and adjusting to that. When I returned to the occasional tipple can’t say I felt any different between the evenings I did or didn’t have a drink.
Kate's book is what led me here 
Well worth it.
My Bible ! helps you deal with medics (ie you know more than they do!)
I want to add my thanks to Kate Gilbert and her very helpful book on PMR and GCA. Between her book and this forum I have gained some understanding of my PMR. Understanding relieves the mental stress of not knowing what is happening and the worry that this causes.
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