I was diagnosed with PMR just over 4 years ago. I am 70 and retired 2 years ago. Pred worked well for me, the odd flare always controlled by increasing Pred to 10mg. In that time I never managed to get below 7mg. I didn't know why but thanks to this forum I know now. I had what I thought was a flare in June last year. Increased the Pred but it didn't work. Spoke to GP a few times and we kept increasing the dose and got up to 30 mg but still no relief. She referred me to another GP who had a special interest in MSK conditions. The first time I saw him he immediately said its not PMR it's probably OA. This was based on my inflammatory markers not being raised! I said this maybe due to me being on 30mg. He took some more blood tests and told me to reduce from 30mg to 15mg immediately. I said I daren't do that as I had always reduced gradually. He then gave me 1 week to reduce to 15mg which I reluctantly did and suffered! He also prescribed Naproxen which I take twice a day. I saw him a month later in December he said its definitely not PMR as bloods ok. It's OA. Gave me until the end of of this month to get off Pred! Discharged me back to my own GP. I saw her and said I am not prepared to reduce from 15mg to zero in 2 months. She agreed and said 1 mg reduction every 2 months when I got down to 10mg. I showed her the dead slow method and said I would like to try that when I got to a lower dose and she said ok. I am now on 9mg and about to start the dead slow method to get me to 8mg and beyond. I am still stiff and in pain in my lower back, buttocks and occasionally hips. In the 4 years I have never been referred to a rheumatologist. I know that a few others on this forum have mentioned that they have OA as well as PMR and would value your opinions as to how best to deal with it. If indeed that's what I have. I really don't know anymore. Up until June last year I have always been physically active but now I struggle to walk very far. I would love to be able to go for walks again as it is something I really enjoy and helps with the weight management. Thank you for your patience if you have managed to read all this. Best Wishes FSP25
PMR or OA?: I was diagnosed with PMR just over... - PMRGCAuk
PMR or OA?
If they say it's OA, where have you got it and has it been confirmed by X-Ray? My OA has come on since getting PMR 5 years ago. For the last 2.5 years I have had increasing pain - first in Rt. Knee, then Left and , 1.5 years ago, my Right Hip. Initially these were on one side which was a clue that it wasn't PMR. I have seen Orthopaedic consultants to get these diagnoses confirmed, but the Rheumatologist has been most helpful in giving me steroid injections into the joints which sometimes provides good relief.I have been kept off the Naproxen to save my stomach, and given co-codamol which doesn't work very well but does help me to sleep. I suggest you get referrals to both Ortho. and Rheumy. It is not fair that you are in this much pain unless all efforts have been made to help you.
Thank you Suzy1959. You've hit the nail on the head. I feel as though they're just guessing. There's been no X Ray or specialist consultation. The MSK doctor said I'd probably had PMR but it was now OA. I've been trying to contact Dr Sarah Mackie for a private appointment who has been recommended on this forum as she is based in Leeds and I am just a few miles outside her area for an NHS referral. Thank you for taking the time to reply.
Last year one of my GPs said I was "out of area" for a referral to Sarah Mackie when I asked him! (I'm in West Yorkshire - BD postcode) Last month I asked again, this time the senior GP and now I'm waiting for an appointment to come through. I believe her waiting list is a few months long - she sees patients at Otley hospital.
Good luck!
Thank you for telling me that. I thought it would take a while to get an appointment so I'll ask my GP as I'd like to be able to go for a walk now that Spring is coming. My daughter lives near Otley so I know the hospital and it would be very convenient for me. Hope I can see her. Thanks again.
"I am still stiff and in pain in my lower back, buttocks and occasionally hips."
I would dispute what you describe was OA - and what a twerp insisting it can't be PMR as your blood markers are OK when you were on a highish dose of pred! Does he know what pred does? It suppresses the inflammation which causes the body to produce proteins which can be measured directly (CRP) and indirectly (ESR). My experience with "GPs with a special interest" hasn't been good! Except my current one who actually worked in rheumatology before deciding being a GP was more family-friendly. And to tell a patient who has been on pred for more than 3 months to reduce from 15 to zero in a couple of months is asking for trouble - adrenal crisis here we come! Some doctors suggest a month for every month you have been on pred - after 4 years probably a bit less, but you get the gist.
I had similar problems to what you describe and couldn't walk for more than about 10mins. I was assured by an orthopaedic specialist (without an x-ray as well) that it was wear and tear in the lower spine and I'd have to live with it. That was at barely 60. Thanks very much! In fact it was due to spasmed back muscles - from myofascial pain syndrome (very common alongside PMR) and when the pain clinic here treated that - all gone low back pain and I can walk for hours!
PMR won't morph into OA, they are two totally different things - it MIGHT morph into RA, rheumatoid arthritis. A very different animal and not ideally treated with Naproxen in the long run.
I don't think Sarah does private work but you are not "outside the area" - in England you can be referred to any hospital you like and to a named consultant providing they provide the service you require.
nhs.uk/NHSEngland/AboutNHSs...
Take the link to your doctor in case she doesn't know the rules either!
Where are you though? What is your local hospital?
Thank you for your informed reply PMRPRO. What puzzled my GP and myself was the fact that this 'flare' if that's what it is didn't respond to 30mg of Pred when increasing to 10 had worked before. That's why we thought it could be something else. Everything I know about the adrenal glands waking up and steroid withdrawal have come from this forum so thank you for making me aware of those things. I'm not familiar with myofascial pain syndrome but will look it up. I live in Bradford so thank you for pointing out that I can be referred to Leeds. If things don't improve I will follow that up with GP. I'm also going to request my medical records so that I can track my CRP and ESR movements over the 4 years as you never get to know the actual numbers. This may be helpful if I get a referral. As well as the Naproxen I have Cocodamol on prescription but am trying not to take it as may need it as the Pred dose gets lower. I also take Omeprazole to protect my stomach. I'm glad to hear that you can walk for miles again now. The pain management sounds interesting. I am prepared to get some private treatment to improve the current situation but am not sure whether I need a Physio or an Osteopath or something else. Many thanks again for replying to me and all the information supplied.
What about trying Bowen therapy if you want to investigate that route? It kept me upright for 5 years of PMR plus myofascial pain syndrome prior to pred. If it is going to make a difference you will almost certainly feel it within 3 sessions. I could recommend 2 superb therapists in Durham/Newcastle but that is just a bit far...
I think you are probably right - if 30mg didn't make a difference then whatever it is isn't directly the PMR. But MPS won't respond significantly to even high dose pred - it may iron out the trigger points which are concentrations of the same inflammatory substances as cause PMR and can often be felt as hard knots of muscle fibres in the larger muscles, typically in pairs on either side of the spine in the shoulders, about rib level in in the low back where the baby's dimples are. They can irritate nearby nerves and cause referred pain. But the spasmed muscles don't usually respond to pred alone.
Who will you apply to for your medical records? I would like to see my ESR andCRP readings on this journey of GCA👍😊
Ask at your GP's surgery if they have the facility for you to view your test results online. I can do that, as well as book my appointments and re-order my repeat prescriptions. I'm in West Yorkshire but I assume others can do this, depending how the surgery's system is set up. It means I can see the results of a blood test - very often the next day, as well as historical results.
Do press for Dr Mackie, I can highly recommend her enlightened approach and you really deserve that, after what you've been subjected to. She is also running a research project into the fatigue caused by PMR/GCA, I have elected to be part of this, as has Primrose on here. I live in Sheffield, it takes me an hour to get there. Time well spent. Good luck!
Thank you Sheffieldjanre. I will try to get a referral to Dr Mackie. Fortunately I have not suffered the fatigue that others have. I've got plenty of energy but the body can't respond to use it!
Naproxen gave me a stomach ulcer...now I am unable to take anti inflammatories and steroids really upset my stomach. My GP at the time never warned me that continual use of Naproxen, Voltarol etc could cause such damage.
Hi Suzyj
I'm sorry to hear about your bad experience with Naproxen. My GP has prescribed Omeprazole to protect my stomach but thank you for flagging it up.
Some doctors seem to think that because it is claimed it is less hard on the stomach that that means there is no effect - nothing could be further from the truth!
Its confusing as to which is the best painkiller/antiinflamatory to take. Different doctors and pharmacists have different opinions so you just have to make your own decision. I've taken your advice and have booked for Bowen Therapy. Many thanks.
I have been on the highest dose of Omeprazole for nearly 10 years but still have awful indigestion, pain and feelings of nausea every time I eat. I would not wish this on anyone.....plus the fact that I cannot get relief from inflammation from a simple pill any longer makes life harder than it should be.
I hope your stomach is protected but I would not take it for granted and it may be a good idea to be checked out regularly. (Please excuse me if I'm preaching to the converted!)
Health and happiness to you 
You're not preaching at all. We're not always made aware of the very serious side effects the medication that we're taking can have. I do always read the medication notes inside the packages. I'm sorry you've suffered such bad stomach problems. So far the Naproxen has only caused a rash. I stopped taking it for a couple of weeks and switched to Ibuprofen (also not good for the stomach) and the rash cleared up so I'm now back on Naproxen and it's so far so good. As suggested by PMRPRO I'm trying Bowen Therapy to try to relieve my lower back pain. I have my first session on the 8th March. I'm looking forward to that. Very best wishes.
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