No PMR diagnosis due to normal CRP

i definitely have weakened and waisted muscle in upper arms and thighs also extreme stiffness in those areas and pain in lower back and shoulders and hips my sed rate and c-reactive blood tests were initially very high plus i had weight loss and fever prior to diagnosis

It is unfortunate that Drs ignore the fact that about 20% of PMR patients don NOT have raised inflammation markers. This becomes great obstacle in diagnosing patient properly. On a flip side it is very common to have extensive tests performed to eliminate other causes with similar symptoms to PMR. That is perfectly normal. In the end, when nothing else is found, PMR is usually diagnosed.

Muscle weakness and wasting is not uncommon with PMR. To prevent it or slow don the process one has to make an effort to exercise as much as it is possible given the condition. Simple walks and stretching goes a long way. Do what you can and keep in mind that average PMR treatment lasts almost 6 years, so dont try to taper quickly. Prednisone only manages the symptoms and lets you have better QOL. It does not cure PMR. Nothing does, it has to burn itself out over time.

Thanks, this is really helpful as I begin to think that the doctors thinks that it is all in my head - Actually I am completely clear in my head after talking pred. for 2½ months 😃 I will look at the suggestions for tapering here at the site. I have gone down from 15 mg to 12.5 2 weeks ago, and I think I am now stiffer, and more tired again. However have started rehabilitation training, and that is tricking symptoms.

No. Approximately 20% of patients with PMR or GCA have blood markers that remain in normal range - that doesn't mean they aren't raised for you though. My ESR/sed rate was 16-18 for a while while I was flaring madly and could barely move. MY personal normal is 4 but no-one remarked on the 18 level. And there are direct warnings in the medical literature about assuming that normal markers mean it isn't PMR or GCA.

My thigh muscles wasted badly when I was on methyl prednisolone for several months, When I was switched to prednisone everything went back to normal. One of the recommendations is that an appropriate exercise programme should be provided for patients to avoid muscle wasting.

Although exercise is important in order to maintain fitness and range of motion you must NOT overdo it. It is much easier to overdo exercise when you have PMR because the muscles are not able to recover as quickly from exercise as they would normally. Couple that with the muscle-weakening effects of pred then you see it is important to be careful and not expect too much of yourself at this stage. Later on as your dose continues to taper and the disease is less active than it is at the beginning you will gradually be able to build up again. But there is no hurry - if PMR teaches us anything it is patience!