Help and Advice Please

There are NSAIDS Non Steroidal Anti Inflammatory Drugs such as Ibuprofen and Naproxen and others...they do have some side effects such as heartburn and digestion probs....but not everyone experiences side effects we are all different in what we can tolerate..go back to your doc and discuss what NSAIDS is best for you....best wishes..

Hello Lindsay. To answer your question Prednisone is regarded as the only treatment for PMR. There are a couple of other drugs that are used but they are not really regarded as being the stock standard treatment as they don't appear to give the symptom relief that Pred gives PMR sufferers. When you first started on the prednisone did you get symptom Relief? If yes, then was your quality of life better?Yes, Pred can increase your Glucose levels and will also make you gain weight. I guess what you need to do is ask yourself do I want a better quality of life. If the answer is yes, then have a good talk to your GP acknowledging his concerns and ask if you can have a management plan for your diabetes. I don't know if you are on insulin or not but with close monitoring of your BSL's you should be able adjust your diabetic meds accordingly. I would wait till you get the MRI results of your back. If there is no medical reason i.e disc problems or arthritis then you look elsewhere. Just out of interest did your back pain improve when you were on the Pred. Yes PMR is a most frustrating disease but as you know from this forum you have our support and we are here to help you. Cheers Kath

If you have high inflammatory markers then what you have is not fibromyalgia or not only fibro. Fibro is NOT an inflammatory condition, it is a problem with pain perception. Those sort of symptoms and high inflammatory markers usually means PMR - or another inflammatory rheumatic condition. The only medication that works in PMR is pred.

I suspect your GP is sulking because he's been found out in a wrong diagnosis (I'm often not very charitable). There are others on the forums with diabetes who manage their diabetes well enough while on pred - it means cutting carbs drastically, which also helps with the inflammation.and also the weight gain with pred. Pred changes the way your body processes carbs, removing them as much as possible deals with that problem. The American Diabetes Association has approve low carb diets as a way of managing diabetes - because I just know your GP will tell you you need carbs when you are diabetic! Why they believe this is beyond me but there it is - why give too much of the substance that is the root of the problem and which the body doesn't need in those quantities only to give the patient medication to deal with it? Crackers!

Lilian suggests NSAIDs - they do not work for the vast majority of patients with PMR, at most they take the edge off some of the pain. And long term they are just as risky as pred, if not more so.

If your PMR were to progress to GCA you would HAVE to take pred, and at a much higher dose than for PMR, - or risk losing your sight. There is some suggestion that managing the inflammation of PMR does reduce the risk of that. What is certain is that the unmanaged inflammation in your body is causing damage to the blood vessels. If it was PMR you had previously rather than fibro then it is possible that contributed to the heart problems and long term inflammation in the body increases the risk of cardiovascular disease and some cancers. It isn't a simple case of pred bad, no pred good. 

You were started at 20mg - you wouldn't stay there but reduce the dose steadily. Perhaps you could try 15mg and work from there if it is enough to manage the symptoms. As your dose reduces the side effects will reduce too. You will be able to exercise - which I'm sure you can't at present - going for a walk after a meal helps moderate the blood sugar levels.

And the night sweats and not sleeping may well not be the menopause - they are both problems in PMR as well. The back pain may be due to the PMR itself or it may be due to myofascial pain syndrome which is often found alongside PMR and is caused by the same inflammatory substances except they are concentrated in knots of hardened muscle fibres in the large muscles. These cause the muscles to tighten and that can irritate nerves nearby which then cause referred pain - especially down the sciatic nerve. It often improves at higher doses of pred but is better managed directly with steroid injections and/or manual mobilisation by a physiotherapist or therapeutic massage therapist. I also found Bowen therapy very helpful in the 5 years I had  PMR without being on pred. That wasn't out of choice - I simply didn't get a diagnosis.

lindsey65522, I have been a diabetic since 1962, yes my BS readings are higher and I have gained some weight. I normallywalk twice a day which helps. I am a guy who gets night sweats while on Pred, one of the side effects. But with the Pred diet and supplements I am PMR pain and lead a normal life for a 80 years young. NSAIDs do not help. Acetaminophen may help a bit, for some people. I do not know how bad your PMR pain was, but I could not walk, in a wheelchair to go into the Medical Center. I am very thankful to have Pred and the side effects. Good luck on the rest of your journey, try to think positive and try to smile. Smiling 🙂

Oh, and yes cut out CARB! You do not need any process foods, potatoes, rice or grains. You have to change your diet, no easy way out. And be active! I walk, you have to do something.

Smile 🙂