I’ve been bobbing around between 10 mg and 8 mg for the past six months. I manage to get the dosage down and then my hips/legs start playing up and feel very uncomfortable, so I'd up the dosage. On the advice of my rheumatologist I’m slowly reducing my dosage and am now down to 8.5 mg and I’ve now go that the same old feeling back again. I take co-codamol (15/500) when things get really bad but don’t want to take these on a regular basis. I’ve taken about 8 this month. They do help though. I’ve had my hip x-rayed and they are fine so the problem is (or feels) muscular.
Has anyone else had these symptoms and gone through the “pain barrier”? How long will I feel like this or does it just depend? I suspect there will be no definitive answer as everyone is different. I do not want to increase my dosage as both my doctor and consultant tell me to reduce it.
My 'plan' is to fight on but some idea of how long for would be helpful.
Written by
InTheMoors
To view profiles and participate in discussions please or .
The fact that co-codamol helps does make it seem that your problem is not the PMR. Although the steroids can help other problems which then start to show when people reduce. Doctors in general want us to reduce steroids as if there is no tomorrow, but they don’t have the pain! At least you have discounted arthritis in your hips. You should take enough pred to sort out the PMR pain. If you try and fight the PMR, the PMR will win.
The fact that co-codamol helps does make it seem that your problem is not the PMR.
That’s what the consultant said. Prednisolone has anti inflammatory properties and they may be helping mask something else. Trouble is that no one can tell me what the ‘something else’ is.
Pain killers can help when reducing steroid dosage:
Your doctor may recommend painkillers, such as paracetamol to help relieve your pain and stiffness while your dose of prednisolone is reduced.
However no one seems to know with certainly what I've got. At the moment I've got to go with PMR diagnosis and surely there has got to come a time when the results of reducing are overcome?
It is always difficult when you have PMR and ‘something else’. Everything is often blamed on the PMR and the steroids. Your doctor will need to do some more tests to try and diagnose what the problem is, it does seem that your consultant knows there is another problem, which is half the battle. You will need to go back to them until they can sort it out.
As it sounds very PMR-ish , try the flare protocol - as explained in attached link which should sort things out -and 2 weeks at a higher dose of Pred will be less harmful than too much Co-Codamol -
I've been doing the flare protocol for six months and it feel like I'm trapped in some Groundhog Day scenario. Surely, someone has battled through the pain barrier and got out the other side?
I've just put in another request to the doctor for more Prednisolone and he now wants to speak to me - another telling off for not trying hard enough presumably!
If you been trying the flare protocol over the last 6 months then I would ask-have you ever got it properly under control on any occasion?
June 24 i was started on 15 mg and it felt fine. Dropped to 12.5 mg and it felt fine. Dropped to 10 mg and was OK (not quite fine but i could live with it). Since then it's been a struggle. I'd say 10 mg was the lowest I could comfortably live with.
If not, then you probably have more than PMR going on… and your Rheumy needs to get their thinking head on…
I wish they would, but to be fair not all the test results are in (or have been explained to me)
.. or is it you not managing it? I would hope not as you are on here!
Doing everything as advised by the consultant and doctor. Meticulous about recording every dosage on spreadsheets - dates, times, med. orders, unusual symptoms. Logged details of every interaction with medics. Read quite a few help sheets on here and NHS sites.
In that case (and I wasn’t suggesting you were doing anything wrong 😑) - I’d stick at 10mg (or preferably just above as that seems to be where things started to go awry) for a few months.
One of the studies often quoted suggests this -
15 mg daily for six weeks,
then12.5 mg daily for six weeks,
then10 mg daily for one year, then
Reduce daily dose by 1 mg/per month
I would attach link to full study -but it’s not easy to access -
authors are Kirwin and Quick.. Prof Quick is Rheumy at Luton and also involved with charity
It took me over 4 years to get reliably below 10mg pred. Some people only get the benefit of about half their oral dose whilst others get 90% - you may be a 50% person, which means your 10mg compared with someone else's 6mg. which they probably would object to.
Hello, I'm sorry that you are having a frustrating time. Can I add my two pennyworth? Your journey sounds fraught and stressful. I went through a time like that, trying to find answers, the magic dose to 'cure' the problems and causing myself more problems 🙄. I had to learn a hard lesson ( still learning). The 'wise ones' as they are called on here, have been patient with me but must have pulled a few of their hairs out before now. Anxiety and stress are two of my long time companions and they are both contraindicated in PMR. On the days I am able to chill out and relax I have fewer symptoms. I am learning that I can't always be in control, and that's ok. I hope you can find the way through for you ITM. Sending my best wishes to you.
Just in case this is useful: I had to stay at 11mgs for many years. Every time I tried to reduce, I flared. I have had PMR for 13 years and have only been able to reduce down to 6.5(so far) in the last 15 months.
The takeaway from this is that everyone’s PMR is unique!
That gives me hope Suzy. I have had it for 5 years and find that below 10 mg ain't easy despite constant cajoling from my doctor (who thinks I don't have it anyway but hasn't any other sugestions) . Have you any thoughts as to how you have only just managed to drop so substantially! Less stress??
I see from your post, the next and many others that many people seem to get stuck on about 10mg. I’m sorry, I don’t have any answers, but I’m in the same situation. I’ve only just managed to get down to 9mg after 18 months. I’ve always needed more prednisone than average (so I’m told). I started on 40mg which I needed then. Annoyingly I got down to 6.5mg a few months ago by tapering half a mg a month. Then a massive flare (attack) happened. I had to go back up to 20mg to stop it. I do think body mass has an affect on dosage - this seems lodgical. I’m a 68 year old 90kg man. I think I’ll taper by half a mg per 6 weeks next. Sigh…. It’s a long road… Good luck with your progress. Let us know how you go or any tips.
Hi there, I'm having the same problem - I'm now on my 3rd start from 10mg having recently had a flare at 9 -> 8.5mg - the flare protocol worked very well and I'm in the first week of my DL slow taper from 10 to 9.5mg over 5 weeks. I did think of using PMRPro's dead slow which I think reduces 0.5mg over 8 weeks. Anyway when reviewing all aspects I decided my problem could be I'm just too active and slowing down I'm sure will help and hopefully be enough to taper down. By slowing down I mean
a) when I swim which I do 3 times a week I only do 6 lengths - I know when I do 12 lengths I get what I thinks is called DOMS (delayed onset of muscular soreness. At 6 I do not get this.
b) I walk twice a day and sometime get to 9 or 10,00 steps. I've put a cap on this to max 5,000 steps. Even at 5,000 I still get deep aches in my legs, thighs and calves which seem to spring randomly in either but mainly in my left leg. But I can live with this and there is no DOMS.
I'm trying to balance what I can do physically when putting up with the discomfort and the need to demand less support from Pred and my own natural cortisol like resources to facilitate the taper. The walking especially is going to change my lifestyle but hopefully not too much. Then there is a possible weight gain from less exercise - back to a very low carb diet - no bread, pasta, potatoes or rice 🙁. I'll let you know how I get on.
I can identify with everything you say. I am 76 yrs male stuck on 10mg pred. Main symptoms pain both hips ( not arthritis) and upper legs and lower back , fatigue and intermittent depression. Problem is that it is complicated by my historic use of codeine to stop the pain. I am now addicted to it and suffering even worse because trying to withdraw. Please try and stop the Co-codamol . Ibuprofen may help a little. I find symptoms worse when I am under stress or very worried. I have to walk 2 dogs twice a day and I find this helps a lot . Mild exercise is essential I find but too much is bad. I always feel bad after sleeping too much - best to get up early. I sincerely hope this is of help.
I can identify with everything you say. I am 76 yrs male stuck on 10mg pred. Main symptoms pain both hips ( not arthritis) and upper legs
Hi Boomerang4
That's where it gets me. I'm having a bad day (again) but am determined to stick on a dosage of 8.5 mg and no co-codamol. I assume that my body must adjust to this dose sometime, although i can find no evidence to support this - if anyone knows of any such evidence then please, please link me to it.
I have a mini gym which i cannot use at the moment (too difficult). I've worked out that from the compost heap behind the garage to the front gates is 90 steps so I'm doing this as exercise. I get the odd look from my neighbours as I walk up and down the drive with no apparent purpose!
"I assume that my body must adjust to this dose sometime,"
Not if it is too little to manage the inflammation - or at least, not until the underlying cause of the PMR symptoms has reduced considerably in activity.
I have been on prednisone for 9-10 years. (starting to lose track of of time) for PMR
I am now on 7-7&1/2 mg prednisone.
I have just started using pain medication to help reduce. I have a really bad back and it seems arthritis is raising its ugly head. So It gets really hard to know where the pain comes from.
I figure a lot of it is my back and arthritis and not the pmr. It has been a few weeks and I feel pretty comfortable at 7mg.( first time at this level in all these years.) I don't like using the pain meds, but I am willing to give it a try. I was using tylenol, 6 @500mg daily and now I am down to using 1-2 daily as I use the narcotic.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Back again 
Steroid withdrawal
flare concern
Increased prednisone to address this longstanding flare
Still depressed about pain and upping prednisone 
