Hi guys, this is my first post although I have been observing from afar for at least two years. I am into my third year of this journey we call PMR and feel I am getting nowhere. I started at 20mg Pred and tapered to 12mg before I had a problem, probably what you would call a flare so I went up to 15mg and started again. When I told my rheumy he was not happy and he said I need to taper to 10mg before he sees me in June. I am trying and got down to 11mg but I am in as much pain as I was before starting Pred. I am thinking of going back up to at least 12 mg but should I go higher before starting to taper again? I find paracetamol helps me enormously but have been told it does nothing for PMR symptoms.....I also find a glass or two of wine works wonders?? Do I have PMR or just arthritis or old age or just good old lasyitis because I don’t have the energy to do much? Who knows... but how do I find out? I am in the same state now as I was when I first saw my doctors so is there any light at the end of the tunnel for me..... Thank you for listening, this forum means a lot to me......
Help please: Hi guys, this is my first post... - PMRGCAuk
Help please
I think your Rheumatologist has possibly brought about your present problem by getting you to speed up a perfectly good taper and yes I would go back to 15 mgs and let things settle before resuming a very slow taper of 1 mg at a time, one day a week then 2 days and so on until you are at the new dose every day.
Have you been testing for other things along the way like Rhematoid Arthritis, other forms of Arthritis? It is possible to have other conditions alongside. I have had an MRI Scan and various X Rays along the way, 2 Dexa Scans. I also do Pilates with a good physio. I do have Osteoarthritis in various parts of my body and paracetamol does help, as does gentle. exercise. Good luck - courage!
What's the timetable if the pain returning?. I think the key thing is that paracetamol really helps. It could be steroid withdrawal that you suffer greatly from. I always had to suffer for a few days after every drop. If it's starting up again After one or two weeks then pmr still steaming along underneath. The problem is that the memory of the agony and pain sends us into a blind panic. I was always messaging my sister after a drop saying my shoulder hurt so much I couldn't do it. I really hope you get a strategy that the rheumy will work with. Good luck🌻
If paracetamol helps then I’d suggest 1g 6 hourly REGULARLY for the next 2-3 days then reassess.
Have you ever met a happy rheumi? 😉
Pre-pred (and after) wine was one thing that eased my aches. It was almost reclassified as medicine. It’s a vasodilator so it makes sense that it would aid a poor circulation and ease muscles. The other thing was/is heat: long hot showers, heat pads have become a way of life.
Lots of other painful occurrences raise their ugly heads alongside PMR, costrochondritis/rib pain; myofascial problems increase pain all up your back/neck. Aggravated tense muscles grab and squeeze nerves illiciting pain such as ‘sciatica’.
Tell us some more of what you’re experiencing, we may have some ideas.
Oh and welcome to the forum!
Would that be 1mg 6 hourly along with the 11mg I am already taking? Must be......
I’m talking about paracetamol. They’re usually 500mg per tablet in UK, so 2x500=1gram. (Sometimes come as 1g tablets in Europe I think?)
No more than 4g (8tablets) per day.
Paracetamol can be a great analgesic, but the point about taking it regularly and NOT waiting until pain strikes to take it, is to keep your blood levels consistently high enough to be beneficial.
A 2-3 day trial should be fine (much like we might do with a short lived cold/flu) but if this is effective then I’d advise speaking to your GP, for several reasons.
1. So doc knows your taking regular paracetamol
2. Because paracetamol doesn’t usually work for PMR, therefore other causes of pain need to be investigated.
3. Steroid taper may need revisiting if other causes found. Or alternative treatment/medication.
4. To get prescription rather than buying, as you can only buy 32 tablets at a time OTC.
I’m assuming the 11mg you refer to is your prednisolone? I’d continue that at the current steady rate whilst you assess the efficacy of paracetamol.
Actually you can buy a larger box of own brand paracetamol from a proper chemist/pharmacy if they know you, know you are using them for a legitimate reason and over 16 (strangely enough I am!)
20p for 16 tablets in supermarkets in the UK
I didn’t know that DL ~ we get ours in the Supermarket, l prefer the shape of them.
Thanks for that x
Can’t remember how much, last box I bought with other things, but at least you can buy 96 at a time.
Just for interest, Paracetamol is unrestricted in US. I just bought 1000 500 mg tabs for $15 at A local grocery warehouse
It is restricted here in UK, normally you can only buy 2 packs of 16 tablets (500mg); per adult. Health & Safety rules!
A pack doesn’t last long if you have to takes 2 tablets 4 times a day for pain.
However, if you get on prescription then obviously no cost to us oldies, and usually 100 tablets on a monthly basis.
Having read your latest post it does sound more like a flare due to reduction. So maybe ignore the paracetamol trial for now.
Might be worth trying later to see its effect, but definitely nip your flare in the bud at this time with pred.
Thanks guys, it helps to know there are many other people with the same condition. My pains are mostly in my legs. Upper thighs.... when I stand from sitting a while, restaurant etc, it takes a good minute before I can walk. I tapered using to DSNS method 1/2 mg at a time and have been on 11mg for about a week now. I am thinking I will go up, especially as I have my family coming to stay for two weeks......
Well indeed, you may have just inched below your required pred dose to keep PMR symptoms from peeking through. As this is 1 week after a reduction, it may well be that inflammation has built bit by bit over 7 days or so, and now it’s come back to bite you ☹️
This is similar to me when I’ve overshot the pred dose, thighs started around day 7 until by day 9-10 I was sure it wasn’t going away. I’d be tempted to do 2 or 3 days at 15 to clear out that inflammation, then drop quickly to your last good dose 11.5mg. Maybe something like 15, 15, (15), 14, 13, 12, hmmm, family coming to stay = more activity/stress so maybe stick at 12 til they’ve gone, then back to 11.5 after you’ve cleared all the debris that family visits cause!
Thank you, I think I will give that a try and see what happens......
Hello Chrissiedon, Welcome 💐
I like you could get to 11mg but trying for 10mg always put me back to square one & l ended back up at 15mg each time.
Maybe if you stick at 12mg for a month to see how you go & yes a simple pain killer can help the issues that blur the lines between PMR & OA plus the general aches & pains.
Many Rheumatologist’s just want to get everyone tapering down 1mg per month regardless.
Have you considered going from 12mg to 11.5mg using one of the slow tapers?
My lovely Consultant (RIP) used to advocate 0.5mg drops from 10mg but there would be no harm in trying it from 11.5mg.
You can ask your GP for some 2.5mgs & make up your dose with 1’s & 5’s or simply cut a 1mg with a pull cutter, I just prefer using whole tablets.
Now you’ve taken the plunge to ask a question please keep in touch & let us know how you are doing.
Kind Regards
MrsN
If paracetamol is helping a lot then I would wonder if it isn't PMR but some other form of inflammation that is relieved by the combination. I too found I was much better after dinner and wine than earlier in the day - and that was without pred! And paracetamol never does anything for anything for me!
At what dose are you OK? How does the pain return - immediately you change the dose or after a short time?
I am sorry that you are still in a lot of pain and the steroids are not helping as much as they should be.l agree with Sheffieldjane,you need to taper down more slowly.l also find that l do not have much energy and have to be careful not to overdo things,l felt fine on a much higher dose,but did not want to stay on a high dose as it is best to taper down to a resonable level,l hope that you find the right dose for you before too long,Good Luck !
You now have some great advice from people who are expert in controlling this debilitating disease.
Christie please take the advice given here and let us know how you coped...
In the meanwhile, of course there is a light at the end of that pmr tunnel. Just think positive and you will overcome this set back.
Have a lovely painless weekend.
YuliK. Age 76
I found at lower doses of Pred (well lower for me) that my OA pains came back - so it could be a combination of both.
Regular paracetamol is recommended by some for OA, but it’s what I call a low level pain relief.
However, some say pain killers don’t help, and try to incorporate more exercise - easier said than done when you may be a medical expert, but not in constant pain!
Wine definitely helps my PMR along with all my other problems! Brandy is not a bad medication either.
jinasc swears by brandy - claims she doesn't like it though!!
I wonder if you good mix it with something?
All sorts of things according to google!
Sounds like good news, on the other hand I do like a good cognac when the bank account allows.
I can't even bear ice - so have to have a quick slurp when OH gets one with ice!!
Thank you to everyone that came to my aid. I have decided to go up to 13 mg for a few days to see how that helps and I can already feel the difference in my legs. Then I will slow taper again but will stop next time as soon as I feel the ache..... thanks again guys
Morning Chris, there are good and not so good rheumatologists, you need a good one by reputation.
By design, all of us are supposed to taper by 1 mg a month. For you to suffer such pain continuously demonstrates you are not being understood.
In my case, I started with 20mg and kept on it for 2 months then tapered down at 1mg a month. I`m now off steroids though the issue has left me with a permanent joint weakness. Ordinary painkillers do help which is essential as I`ve noticed muscle wastage sets in .. never to be got back.
Did your case just come on ? if yes, then to my mind you have PMR, if it crept on I`d be dubious and consider it to be something else. Be a pain in the neck with your medical advisor until he/she gets it right.
I know the medical literature describes a ‘sudden’ onset, often ‘waking up with pain’, however I for one was a ‘creeper’ over several months, accelerating towards diagnosis, and I don’t think I am alone.
No - me too. I suspect that it is a flare that strikes and creates the overnight scenario as I had one episode like that. PMR had been there for years but one day I couldn't move. But it wasn't sudden really.
I'd dispute your comment about muscle wastage - I had severe muscle wasting during the 8 months I was on methyl pred. When I stopped and switched to prednisone and started walking gently the muscle started to return and now I have no problems. It didn't require a lot of exercise, when I started I was on crutches! Guidelines say we should be offered tailored physio to reduce the risk of muscle problems - they are not inevitable or irreversible providing the right intervention is available.
Thanks for this post. The one on muscle wastage really alarmed me as I am trying to get power back into my legs by walking as much as I can. Hope to borrow my son's reclining bicycle and start on it. I think it is a big mistake for us PMR people to just constantly rest. Yesterday found leak under my kitchen sink. My first thought was, " I cannot get down on my knees to look at this." Then "you must". Did it three times, not without much effort, but had feelings of accomplishment afterwards. Hot showers are wonderful. That is the time I manage to bend and touch my toes.
The secret is not to walk loads but to start small and build up slowly - the way I go on about for all exercise with PMR. I started by hobbling into the village on crutches, then a bit further to another shop and back, to the chemist and back, the short circular walk, the next longer one and so on. But I did each for a couple of weeks before aiming for the next level. I didn't bother about speed - I built up distance first and speed later.
Yes, I started walking in the park, where my dog can run free. I would stop when I felt my body had enough. Over time I have been able to extend time to 57 minutes, one time, walking very slowly. I do the same route, so I can kind of compare one walk to another. Also Lily is familiar with the route so she can constantly keep track of me.
👏🏽👏🏽👏🏽👏🏽🥳 good for you!!
I`ll shut up then an just sit in a corner. The stage is all yours.
I merely pointed out that it is possible to recover muscle after myopathy. Because it is.
Hello Chrissie,
Your story exactly mirrors mine and i think I wrote a post recently? I too am approaching my third year. I too am still on 12 having tried to go below 10. I too seem to have lots of pain and stiffness that is helped to some degree by paracetamol. People have said it is probably just normal old arthritis which I did have before PMR struck. I think the truth is that we are all different and that the old ailments are still there and that PMR and steroid use will all take a different path. Work out what works out for you. Don't be bullied by the medical profession and stay on this forum because we're all here to help each other....!
I am 10 months in and due to severe virus 6 weeks ago, PMR bit with avengence. From 12.5mg back up to 15mg. Feeling much better and less continual fatigue....but dread the taper process again!
Point of this message is alcohol and pred. I have always enjoyed my wine (probably too much). However, any alcohol now gives me a ‘buzz’ BUT the rapid drop after about half an hour negates any good feelings, leaving me feeling tired and lifeless. Have thus reluctantly stopped ALL. The lack of spike has improved my wellbeing....never thought I would be be saying this! Anyone else find pred and alcohol don’t mix?
I was on 20mg but had to reduce because since I started pred again (March 1st), i was experiencing debilitating pain in my neck, throat felt like I was being strangled the whole night, jaw pain and pain down my back. So I came to 10mg and have no issues so far. I know that’s a ridiculous jump but I’ve done prednisone for three years in the past and finally got off of it until I got a viral and a flare up began.
Also I’m not so sure the wine and pred mixes well for me either? I tried it and had a flurry of fevers and chills for the next two days after. Could have been anything though ?
MTCD
Last week, I felt I might be relapsing, however, when I thought about my diet, I realized I had not been following it as well as I had earlier. I had drunk more wine than I had been allowing myself and ate a piece of cake, lots of sugar. I'm continuing on the 3.5 dose for a few more days or a week before I try to drop to 3mg. I must retrieve my "strong will." 
I feel that sugar really messes things up for me too. Also pred gives me a false appetite all the time so sometimes I go on an eating rampage and then feel so sick after.
Cutting back on both sugar and eating overall, going to be very conciencous now that lowered my dose too!
Good luck girly!
With the onset of PMR over a year ago, my Dr. said NO ALCOHOL ! Period. Messes with Prednisone and PMR. I am 76 and after consuming alcohol for over sixty years and enjoying it daily I quit. Cold turkey. I don't regret or miss it. Feel better in other ways by not mixing alcohol and prescription drugs. Just my $.02. We are all SO VERY different.
Sorry to hear you’re in such a state. Whilst paracetamol has a place it’s not a good idea to use it too often.
Is there a chance you could change doctors? Maybe one that has a bit more empathy for you.
It takes time to get the dosage right and even then flare ups still happen.
Just rest when you need to and get exercise when you feel you can. Live your life according to your capabilities at any given time.
If it’s unbearable put the dose up to what relieves the pain for you and reduce again.
You have a rheumy? What is one of them. I have a loads of steroid pred and I treat myself. My UK doctors do NOT care. Not at all. (It was a nightmare to get steroids out of them, originally. But when I did, the pain was gone!) I am left to it, never seen a specialist. I also have calcium tablets and alendronic acid. I am down to 2mg a day, and do have pains, but I can live with them. I have LOADS of various boxes or pred. I also have COPD so prednisolone is always a possibility. I did see a doctor recently and he laughing said..."it does go away, eventually" Oh good, thanks for that. How long have I had PMR..Not sure, 2 years plus, probably.
Oh Alsdouble, I feel for you, please take advice from this forum, they are wonderful advisers and just this week I have been helped. Ask as many questions you need answering before making decisions. We all hope it goes away eventually but what if it doesn’t? Just do what YOU think is right. Ask Ask Ask again on this forum for help and yo will be helped.....
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