I have osteoarthritis and waiting hip replacement. The last couple of months I’ve been in agonising pain not only in that hip but ringer down to my knees on both legs to the point I’ve been having to use 2 sticks wen I stand up and take my first few steps. I have no cartilage left in my hip joint and Dr thinks I have cronic nerve pain. I am on a lot of pain relief medication even on morphine for a while which did nothing for the pain so I stopped it. I was becoming really depressed and not able to leave the house much because the pain was so severe. I have forced myself to go to work as I’m mainly desk based job. I was diagnosed with PMR almost 2 years ago. I was startled on 15mgs of Pred . Anyway tapered down around a year ago to 1mg. Had same issue with my legs. Upped the dose again and pain went. I’d now managed to get down to 6mgs. Out of desperation with the chronic pain I upped the dose to 15mgs again 3 days ago now and the pain and stiffness in my thighs and knees have greatly subsided! I took my 3rd dose of 15 mgs today. My question is where do I go from here? Do I stay at 15mg and drop 1mg every month? The difference the 15mgs have made in the last couple of days has been amazing! I still have the pain in my hip but as I said thighs and knees are so much better to the point I don’t need 2 sticks anymore!
How long: I have osteoarthritis and waiting hip... - PMRGCAuk
How long
Morning HC2, sorry to read of your continuing problems. It maybe that your PMR has never been totally under control and is now showing itself in a flare, particularly as it would appear to be in both legs. There is information in the FAQ'S about dealing with a flare but you should be safe for up to two weeks before going back your old or a slightly higher dose. You might want to look a longer taper, particularly with everything else that is going on at the moment., again, tapering plans/information in the FAQ'S.
However, this is a big change from your present regime and I think you need to see or at least speak to your doctors as soon as possible.
Good luck, hope the hip surgery comes through soon and take care.
Thank you! I don’t think my Dr really understands PMR to well. The last time I upped the dose I told him it had made a huge difference and that I used this site. All he said was it was a good decision but did not tell me how to get back down lower. I think I have more knowledge being on here😂
I think a fair number of our members seem to have doctors who are not totally au fait with PMR, however, you should still make an appointment to see/speak to him/her. The information on flares and reducing is all in the FAQ'S even if the doc is not very forthcoming. You do need to keep them in touch though as they will a) have to prescribe the Pred you need and b) they may want to do some checks/tests to rule out/in any other possible problems that Pred could hide.
Have just made a TC appointment with my Dr for next week
That's good, shame it couldn't be a face to face and a bit sooner, but better than many get. Suggest you make a crib sheet of all the things you want to ask and if you feel you are really getting nowhere then suggest a referral to a Rheumy. Fully agree with all the points made by the others.
I agree with Bcol that your PMR has never been under control apart from when you have been taking higher doses of prednisolone.
Is it your GP who has been managing your prednisolone?
Have you ever seen a rheumatologist? Assuming you are not I firmly believe that you should be in the care of a specialist who understands PMR as it’s clear that your doctor has little knowledge of how to proceed. The fact that 15mg is now giving so much relief shows that the dose is managing the PMR inflammation in your body and I would be extremely wary of reducing too soon; the experts here will advise on your next moves regarding reducing but I think it’s showdown time and that while you are feeling so much better it would be advisable to politely let your GP know that you are not confident in the way things have been managed. I understand that you may not want to ‘rock the boat’ with your GP but, in my opinion, he is doing you a great disservice by allowing you fall into a yo-yo situation with your medication and a change of doctor is necessary.
You have my sympathy and you really do deserve better.
Thank you for reply. I was prescribed Pred 15mg around / years ago and advised to taper slowly. Since then I’ve had 1 previous flare and upped them then back down. This time I have thought the pain must be due to the arthritis. I’m on regular amitriptyline, tramadol, naproxen, paracetamol. The pain got really bad and Dr put me on morphine which did nothing so after around 2/3 weeks I stopped it. The pain has been out of this world so Dr said could be chronic nerve pain so am now on Gabapentin 700mgs 3x daily. To start with I thought they may be helping but they are not. So out of pure desperation I upped my Pred to my start dose and have got a lot of relief! Really I have been left to manage my Pred myself. The Dr did say when he gave me the gabapentin that could be a bit of PMR as well. All that happen in regards to managing my PMR is I order repeat prescriptions and just taper or up (like last time and now) when ever I feel the need to. I really don’t want to be on Pred as weight gain, teeth worries and scared if on to high dose surgeon won’t want to do my hip replacement however the pain stiffness this time was out of this world
But there is no point having the hip replacement while in the throes of PMR as you won't be able to do the post-op rehab that is absolutely essential. It is pretty clear from the result with more pred that most of your problems are uncontrolled PMR and you probably don't need the half of that pharmacy you are on!
Yea I get what your saying however the pain from hip is also terrible as it’s now bone on bone no cartilage left. I had something called Perthes as a child which was sorted and had no problem u till 2012. It’s steadily go worse to the point I’m priority for the replacement. I’m seeing the surgeon in July again. The only meds I’m thinking maybe I don’t need is the gabapentin as was put on that around 2 months ago. As I said I was also put on morphine but did not help so I stopped it. The rest of the meds I definitely need. I’m thinking staying on the 15mg Pred for 2 weeks then tapering 2 per month until I get to around 10 then 1/2. Mg per month after?
Yes, I do understand that - but the hip replacement won't do much good except pain reduction unless you can do the post op exercises. You need to clarify this with both your GP and the surgeon asap
Prednisolone can certainly cause side effects: some people get a few, some get none but quite honestly this medication is the only one (as yet) that will manage the pain resulting from PMR inflammation and lead to remission of the disease. You do need to be referred to a rheumatologist particularly in view of the difficulty you have had in reducing Prednisolone (poor management) since diagnosis and also because you have other health issues. Having your doctor throw all kinds of stuff at you is, and this is my opinion, possibly causing their own side effects and on top of that they are not working. Again my opinion, but prescribing all this other medication is a get out. Your doctor “thinks” you have chronic nerve pain (vague!) but the gabapentin didn’t give relief! Why isn’t he referring you to a specialist for tests?
I don’t like to keep banging on about your doctor’s seeming inefficiency but it’s your body and your health. How long is he prepared to allow you to suffer without interventions? How many more different medications is he going to try?
It is time to make a face-to-face appointment and ask him what he is going to do to now that you have tried all these other meds without improvement- only with prednisolone ….it is his job! You have a chronic systemic disease and need a referral to a rheumatologist (give us a rough idea of your area and someone may be able to recommend) who will be likely to handle your care with the involvement of a multi-disciplinary team, eg, neurologist for nerve pain.
Do you have a family member or friend who will accompany you to an an appointment and be a support?
I know I sound angry- I am but on your behalf and I mean well. No one should have to put up with an inefficient doctor and you do have choices.
I really do wish you well and I hope you will think carefully about pushing for a referral to a rheumatologist or at least changing your doctor. Please keep us informed. We do care!
Thank you! You are so right! All I get is meds after meds and surly if the morphine did not help it should have flagged up something for him. I’ve really been left to work it all out for myself and really don’t have a clue it’s hit and miss. Trial and error ☹️
It can be a difficult decision to question a professional but the 'trust me, I'm a doctor' thing isn't always wise if your body is complaining and your mind isn't at peace. Many on the forum have found that's is easier than they believed to be their own advocate and to be honest it's empowering. As I've said, you can be polite and respectful even though you may be seething inside. Good luck! You have time to make a list of questions as advised and that way you won't forget anything and kick yourself afterwards. Do tick off or put a line through questions you ask or points you make.
Please come back here after your call. 💐
Good morning! So I spoke with my GP yesterday who agreed for me to stay on the 15mgs for 2 weeks then stop to 10mg for 2 weeks then to drop 1mg every 2 weeks and see how I feel. I told him I’m aware that PMR is not very well known about and he said he had been on training about it the day before and will have another session today. He has also said he is going to refer me to a Rumy. He also mentioned a mediation beginning with M but I can’t remember the name.my question is after dropping from 15mg to 10mg is the following to drop 1mg every 2 weeks to fast?
Pleased to hear you spoke to your GP. The important thing in dealing with a flare is that the dose prescribed gives at least 70% relief of symptoms before you should even consider a further taper. Your GP can’t predict how you will be so you should be looking at your symptoms which will be your guide and not his plan for tapering. The M he speaks of is probably Methotrexate which is a DEMARD- disease modifying anti-rheumatic drug purported to enable you to reduce prednisolone-but that doesn’t need, in my opinion, to be considered just yet. Others will be along to comment on that side of things.
Good news that your GP is undertaking training and how refreshing that he is admitting that he needs to know more about PMR. I hope the ‘teacher’ is competent. I’m pleased to hear that he will refer you to a rheumatologist and hope you won’t have too long to wait.
Thank you for coming back with this news.
Thank you so much for your help and support! I do t think by what he was saying he’s ever had to treat someone with PMR! As he said due to me having severe arthritis it’s difficult to know which pain is which but hopefully the Rumy will have more knowledge. I have read lots of things on here about people visiting Rumys and a lot complaining that they are being forced to come off led to soon….this worries me. I think I will drop to 10 for 2 weeks then maybe if on drop by 1mg every 3 to 4 weeks and see how I go😬
PMRpro and DorsetLady have given solid advice re tapering which I urge you to follow. Patients actually are ‘allowed’ more say now in their care so please don’t feel awkward in expressing your thoughts to your GP. You are learning as you go along and right now it’s the same for your GP. Whatever treatment is offered you have the right to question and to put forward any reasons why you may not agree with the doctor’s recommendations. Here is something else for you to read which should reassure you:
england.nhs.uk/ourwork/pati...
We are all behind you and will support you for as long as needed. Our experts are experienced, knowledgable and sympathetic having been through the system themselves.
I wish you all the best for an outcome that works for you and look forward to further news.
PS. Write everything down with dates! 😉
Obviously hadn't been told that you slow down from 10mg - 1mg every 2 weeks is too fast!!! More than 1mg per month is predictive of flare - that is 2mg per month. It takes more than 2 weeks to be sure a new dose is still enough. And dropping from 15 to 10mg is in no reduction schedule I've ever seen - far better to go via 12.5mg and stay 3 weeks at least at each dose.
The medication is methotrexate - there is no proof it helps in PMR although it does work very well for a small group of PMR patients but has its own downsides with potentially unpleasant adverse effects and no guarantee it will get you off pred although it might lower the dose you need a bit. It probably is worth trying - first to see if you can take it without it making you feel worse because of side effects and then to see if it works for you - it might, But it can only be initiated by a hospital specialist although the GP is supposed to do the blood monitoring and prescriptions.
PS your GP might be interested in these two links for their education
pubmed.ncbi.nlm.nih.gov/368...
I think is probably one of the most significant publications about PMR in many years
onlinelibrary.wiley.com/doi...
is also a pretty good review
And dropping from 15 to 10mg is in no reduction schedule I've ever seen - far better to go via 12.5mg and stay 3 weeks at least at each dose.
Thought the same on first read, but having read through again (although I may be wrong), I think it’s being treated as a flare - Holycow2 was on 6mg previously and increased to 15mg.. but certainly agree with you on the taper from 10mg down.
Yea it’s been a flare so went up to 15 my original start dose as was so bad just to get under control was then going to drop to 10 after 2 weeks at 1( then slowly down by either 1mg or 1/2 mg every 3 or 4 weeks and see how I go
1/2mg every 3-4 weeks would be better…
1/2 mg from 15 or 1/2 mg from 10?
From 10mg -but if you’re not 100% sure about the drop from 15mg to 10mg then go via 12.5mg as suggested by PMRpro.
Oops - distracted! Just had been looking at another where instant tapering was being pushed!
😊
Oh ok…. So I will drop to 12.5 for 3 weeks and see how I feel. Then what would you say drop 1mg every 3 or 4 weeks or 1/2 ?
If you are dealing with a flare -this link contains advice on how to deal with it But as suggested your PMR doesn’t seem to have been regulated at all well.
healthunlocked.com/pmrgcauk...
Once you have got this current flare under control, suggest you reduce as suggest down to 7mg - stay there for a month at least- and then reduce more slowly - using one of the slower tapers we often advise [linked below] and only 0.5mg a time [1mg tablets can be cut]
healthunlocked.com/pmrgcauk...
healthunlocked.com/pmrgcauk...
PMR last a lot longer than a year or so....so don’t rush it this time around…
Thank you DL………It has not been regulated at all. I’m doing it by myself with just repeat prescriptions from Dr
Unfortunately many seem to be in same situation . We did give you advice and information about 7 or 8months ago on PMR and tapering etc -and tbh what your doctor and you may think is a slow taper -very often is not what we consider slow.
With impending replacement surgery you do need to get yourself in a better place -and as PMRpro says discuss with GP and surgeon
sorry for asking for advice again
Don’t ever be sorry -that’s not what I meant -apologies if it sounded like that. It’s just a pity what we advised last time didn’t work out for you 😊
To get to 1mg in a year is exceptionally fast - and from what you say, the PMR is still there and you have been on too low a dose for a lot of the time. If you aren't on enough pred all that happens is that the inflammation builds up until you are in the same position you were before diagnosis - and immobile because of the pain.
You must discuss this - face to face - with your doctor and probably you need to start again, getting the symptoms under control and then tapering again. But only to the dose that is managing the PMR symptoms well - when you do another step and the symptoms reappear you stop and go back to the good dose. It isn't a "get to zero" game, it is a "get to the lowest effective dose" titration to use the medical word.
It may help if you give your GP a copy of this
ard.bmj.com/content/early/2...
if he hasn't already read it in the BMJ. The idea is to achieve relief of symptoms and then identify the lowest dose of pred that sustains that, allowing a decent quality of life. It is NOT to get off steroids in the shortest possible time and this paper presents that as the aim for the first time - it is a very important paper in my view and as many GPs as possible need to read it. So do a lot of rheumies!!!
I have not got to 1mg in a year my current dose before this I had got to 5 1/2 mg. I have also been on Pred 2 years this August. I was told by my Dr to taper slowly which is what I thought I was doing! I’ve been basically left to manage it myself.I thought the pain was from my hip as when I first got pen it was not in my thighs legs it was just in my shoulders. The only things I know about PMR have been on line. Was just told by Dr it’s inflammation. You say there’s no point having the hip replacement if PMR is not under control, however I’m in constant pain from my hip and was told I’d have it by April which has been and gone so if I’m offered a date how can I turn it down and go to the bottom of the que again? I’m just feeling so disheartened
In your post you say
"I was diagnosed with PMR almost 2 years ago. I was startled on 15mgs of Pred . Anyway tapered down around a year ago to 1mg"
That sounds like getting from 15 to 1mg in a year to me - if that isn't what happened, fair enough.
And that isn't actually what I meant - if you can't do the rehab because of the PMR you won't benefit from it. You need to be on enough pred to manage the PMR before having the surgery - and you have to discuss that with the GP and the surgeon to find out the surgeon's view on it. Whatever the situation - you need more pred and the surgery.
Yea I got down to 1mg but then had go back up to £ I think it was then slowly to 5.5 for quite a while then had the horrendous pain all in legs which I and my doctor thought was due to the arthritis being so advanced hence the morphine and the gabapentin. When I was first diagnosed with PMR it was in my shoulders this time it’s my legs which I read somewhere on here you only get in shoulder neck hip and girdle. This pain was all down my legs mainly thighs and knees which I could hardly bend Dr thought referred pain . I decided to try upping the Pred in desperation to the dose I was started on. This is my 4th day on 15mg and I still have the pain in my hip but I know that is the arthritis however the pain stiffness in my legs have drastically improved so I’m taking it it’s PMR.
I think so too. And PMR can be all over, especially thighs and back and knees often join in even if a lot of doctors don't know:
pubmed.ncbi.nlm.nih.gov/238...
This group thinks there is knee involvment in almost all patients. You may have seen someone say they were told it is only shoulders and hips but we rarely agree with that.
Shins not knees, as though they were being sandpapered. Maybe that's what being flayed is like. Extraordinary and excruciating pain like nothing ever previously known. Also frozen feet presumably because the circulation disrupted. Even after the Pred had solved pain I was asking for double blankets over my sock-clad tootsies..
Is that still a problem?
Symptom, not the same. if my PMR is getting twitchy, shows first in the hips, then in what I think I best describe as growing prickliness in the shins, only intermittent sharp twinges in the shoulders, which were also murder at onset. The tootsies - similarly a symptom. More prone to getting cold than they would otherwise do when I sit around for too long barefoot in a centrally heated flat. Hmm. Nothing that simple basic invention the sock does not solve! Or just walking into the kitchen.
I meant the coldness - have you been referred for vascular assessment?
100% pain is out of this world!!
i suspect I was close to it on the slightest movement. Even the most bedbound have to shift to be washed - do I care if I'm dirty! - bedpans, changing the bed. They said "Roll over" and I said, "You cannot be serious!" Actually of course I said nothing of the kind, just squealed tearfully and sniffled. First try at an MRI I could not go through with lying flat because of the agony in my shoulders, lay sobbing in that bloody tube!
Wow thank you for that! I thought I was going to end up in a wheelchair the pain was so severe even using 2 sticks! When laying j. Bed I can hardly put my knees up they are so stiff and painful! I’ve even been getting groin pain in my opposite thigh! I am waiting for X-ray on both hips and both knees
Have you got a date for your hip replacement? I don’t think many surgeons would be happy to operate at 15mg of pred. Even 10mg would make a lot of them worried. I agreed 5mg with my surgeon. It must be agony going to work, there is no way I could have done that, I was able to work from home but had to give up driving in the end. The hip op changed my life.
Well when I saw the surgeon last September he said it’s very bad and said I would have it by April maybe sooner as he was going to try push me up the list. Still nothing! I’ve been calling and emailing and my Dr has emailed them also. I told them in email it’s effecting not only my physical health as I do not go anywhere except to force myself to go to work. I work for the Probation service so am mainly desk based however not entirely. I’m still driving at the moment but it’s not far from where I live, this time last year I could walk for around 10 mins unaided. Now that’s impossible! The hip pain as you will know is horrendous in itself but the pain in my thighs and knees is unbelievable! . I have eventually got someone to listen and I have another appointment with the surgeon in July.I’m hoping these 15mg get me back on track so I can’t get down to around 5 for my op. Do you know why they don’t like to operate when kn Pred. I read some don’t mind othered refuse ic above 5
Very much depends on the surgeon - some will happily accept higher doses - in an emergency they know they would have to and some surgeons that should apply all round. It is a fear of infection and poor healing, both considerable risks in orthopaedics.
oh ok, I’m hoping to get some idea of time scale AGAIN when I see him in July. I’ve spoken to one on admissions and she said should have by August tgen the woman I spoke to a few days ago that is rang as I had an email to book another appointment was very pessimistic telling me I won’t get my op until at least the end of the year maybe the year after!! Then put through to Simone else who said I won’t get a appoint with surgeon I till at least September or October and I’d prob have the op by the!! I did not give up as they kept putting me back and forth between admissions and outpatients who eventually spoke to “ her boss” the lady who told me to book and they have made me appointment for July. I’m sick of being told one thing then another I’d rather be told exactly as it is!! I’m so stressed out with the whole thing at times I v CN oils just cry
All surgeons are paranoid about infection and steroids can reduce your healing ability. In the case of a hip they have to cut down to the bone so infection is more possible for anyone rather than keyhole surgery for example.
It does seem it pays off to be proactive and keep chasing them although it is a bit of a pain. I am glad you have your doctor on your side. It all helps.
It seems the surgeons can have a sway on the operating list, but it does seem there is a whole load of red tape surrounding it. I do hope you get a date soon.
Awww thank you for your support! I really have to keep on at tgem. People I work with can’t believe I’m still making work but if I stayed at home I’d go mad, be skint and eat more🤣 plus it would completely seize up as I’d rarely move!
And the trouble is, hips are done by orthopods - and they are the bunnies who deal with emergency surgery for accidents. Every RTC shoves the hip replacements down the list of spaces. Not to mention various members of a theatre team needing holidays and sickness and strikes ...
Yea that’s true. I’d never expect to go in front of someone in an accident and having worked for the NHS previously for 10 years I’m totally behind the strikes how ever doesn’t help my pain ☹️
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