Hi all not been here for a while. Seen rheumatologist and consultant at pain clinic. Been told its not pmr but osteoarthritis. Reducing pred and am now on 3mg a day. I get bad pain in hips and lower back also my shoulders they put this all down to arthritis. They only pain relief I have is paracetamol which doesn't do a lot. First diagnosed in 2017 and given the usual dose of15mg. I then thought it was a miracle cure as all pain went since then downhill and the pain I have now is worse and constant. Any help from this knowledgeable forum much appreciated.
I am no expert but if it was osteoarthritis why would the pain have completely disappeared when starting pred? I presume you have had x-rays to confirm the new diagnosis? Could it be that the dose you are on is now too low which is why the pain has returned?
Why do they say it is OA and not PMR? When did the pain start to return - as in, at what dose?
I do wonder why they are happy to make one diagnosis in 2015 and now say it isn’t that? Are they of a school that believes PMR doesn’t last that long? Its median duration is 5.9 years - so if that is their line, they are wrong:
hi That is confusing pred eased your pain now they say it isnt pmr ,I know when i had my rheumy examination the xray showed early stages of arthritis in my shoulders and knees ,i understand that but he said pred wouldn’t help this but because of the blood tests the pmr was present , I see him again in March so many questions now to ask him after seeing this forum
The second time I had PMR it went on and on and my doctor asked me to see if paracetamol would help the pain that kept recurring. It didn’t. But the pred . certainly did help my long standing OA.
If we could just have one condition at a time it would make everyone’s lives easier but no such luck.
I see that Maureen’s doctor told her that pred. wouldn’t help the OA pain. That’s just not so. If he meant that pred. wouldn’t cure the OA, fair enough but s/ he should have made that clear.
It took me more than five years to get from 15 to nil.
I had osteoarthritis before I was diagnosed with PMR. the osteo is in my lower back/hips and hands. The PMR arrived in my thighs and buttocks. It is a different sort of pain, seeming to be more in muscles and nerves. Prednisone not only helped with the PMR, but also with the other. As I taper the prednisone, I will go back on to Tylenol. I cannot take anything in the Ibuprofin family.
Pred 15 mg cured ALL my aches and pains including those caused by OA. As that dose reduced the OA came back a bit. Now that I’m at a very low dose of pred I find other painkillers, like aspirin, help. This would make me suspect that PMR is in remission except that when I try to taper I get much worse, even hanging on for a while to see if it’s just withdrawal. Having heard so very often that nothing works for PMR besides pred I’m at a bit of a loss. I do not take aspirin or acetaminophen on a regular basis, just if I have a headache. Inclined to believe that low dose pred is safer than other meds for long term regular use, but I don’t really know.
The pain came back at I think 8mg could have been lower I have been. going to the Hospital for lots of different things. The article was very interesting all my doctors should read it. Next rheumy appointment in 6months. My next blood test next week for thyroid perhaps inflammation will show up then. Thank you all for replying .
That doesn’t mean it is NOT PMR. Pred doesn’t CURE anything. It is a means of management of the symptoms until the underlying autoimmune disorder burns out and goes into remission. That may be in a couple of years for a few people, for a lot it is maybe 4 or 5 years with the average time of 5.9 years. Some of us have it for many years, even life.
Just because pain came back at 8mg doesn’t mean it isn’t PMR. But it was the sign you should have stopped reducing then - or at the very least should have slowed down.
I have PMR and am on 15mg of Pred. daily. in the fall of 2018 I developed hip pain in my left hip only which increased over time. I was already on a pain patch for chronic back pain and this did nothing for the hip pain. In March 2018 after having to insist that my Dr. do something he ordered an MRI. Prior to the MRI they request an X-ray. The X-Ray showed that I needed a new hip immediately. August 7, I had surgery and pain was gone.Did the pain clinic not recommend anything else to help. There are other anti-inflammatory drugs not as potent as Pred. but do help with arthritis. I know because I have been on them in the past. They can effect your liver so your Dr. has to do blood test re liver enzymes on a routine basis. I had to go off of them because my enzymes were elevated which showed that my liver was not dealing well with them. Funny though now I am saying this Pred. does not seem to elevate my liver enzymes?? Personally I have had to push the Drs. re pain control. They really have no idea what it is like to be in pain constantly and unable to do many things. They are so worried about you becomeing dependent on pain medication. I just said look I do not care if I am dependent on it. This back pain is not going away and it has to be worse than being dependent on any pain medication.I have already had back surgery for the Pain which was successful for 9 years., but then stenosis gradually returned. Whether or not you want stronger medication is up to you, but you may need it to help with the pain. I would do some research and then either see your Dr. or go back to the pain clinic. Best of luck, I know being in pain from osteoarthritis is not nice, I have two knee replacements and the one hip.
Why does it have to be one or the other? I have severe osteoarthritis in my shoulders, which is also where I experience PMR pain. The PMR was diagnosed by my symptoms, age and very elevated inflammation factors. The OA was diagnosed by x-ray. Both my rheumatologist and my surgeon accept that I have both conditions. The prednisone that I’ve taken for over 2 years had softened the bone, so that the condition was what my surgeon described as “beyond bone on bone.” (No wonder it hurts!) In December, I had one shoulder joint replacement, which reduced the pain considerably. Blood work (presumably taken after sufficient time had elapsed) showed that I had very high inflammation, and my rheumatologist had me double my prednisone - from 5 mg to 10 mg. Waiting for the second shoulder replacement and a plan to lower the inflammation.
Thank you for your reply you are absolutely right what you say, wasn’t offered any other pain relief it felt like he wanted me gone as soon as possible only there 15 mins I can’t take a lot of drugs like ibuprofen, aspirin or any codeine. he said if pain worsens get a referral back. I just feel they all pass the " problem" to someone else. I am seeing a different Dr at the end of month so I will complain a bit stronger on that visit who knows might get a better result.
I get the pain in hips lower back and neck I know it’s arthritis in my knees . I have just sent for turmeric capsules has anyone tried these for pain relief was previously given gababentin but didn’t find they helped. I like you can’t take ibuprofen or any aspirin and codeine. thanks for answering.
Kathleen
I see that a reply I sent to you has been deleted. Not sure whom, if anyone, I’ve offended.
HI kathleen I went for Tumeric from our local health shop and he advised me to ask the doctor first because of the meds I am on ,apparrantley you have to be carefull .
I have been told to reduce by 1mg a month until zero. I probably won’t be able to request anymore. the next rheumy appointment is in 6mths which I have yet to receive. if they are wrong and it is pmr I will be back to where I started. I have had ultra sound and ct scans and xrays too most show arthritis the ultra sound showed inflammation around the joint. now I am on the waiting game until I see a Dr at the end of month.
There was a program on radio that reckoned fresh or dried turmeric for inflammation was a lot better than the capsules. They had done some research on it, I am not sure how good the research was!
Kathleen please take care. I appreciate that scans/x-rays indicate arthritis but you could still have PMR still running alongside couldn’t you? I was in the same position-being on 3 mg, having managed to get myself down from 20, to be told by a doctor at my GP clinic that I needed to get off asap and she was going to reduce my prescription. The result was a massive flare and had to go back up to 12, supported by a more sympathetic GP, to get it under control.
I found this group as a result thank goodness.
9 months later I am down to 4.
The big lesson I have learned is listen to your body and stand up for yourself.
Good luck- stay strong.
Gaberpentin does not work for me. I have ground turmeric in my spices and add it to the foods I cook. 
What motivates these unsympathetic GPs who want to bully their patients into inappropriate reductions? If you were down to 3 and doing ok what was the hurry?
Glad you found someone better informed.