My gp diagnosed me with PMR about 5 months ago. I started on 20mg and after a month went onto 15mg. The problem is that I am in almost as much pain now as I was pre pred. The pain has grgradually increased over the last 3 weeks or so. I am having monthly blood tests and my gp said that my esr has only come down slightly. The pred has also caused a huge increase in my blood sugars and although my meds are being increased almost weekly there has been very little improvement. If they can't be controlled with oral meds I will have to go on insulin. Before starting pred my diabetes was well controlled with metformin. I'm now on 4 different diabetes medication!
I'm now thinking that it may not be PMR, I have had fibromyalgia for 12 years. The thing is the pred stopped the pain in my knees which have osteo arthritis and also in my back and hips. Is this normal and why has the pain come back? Advice please!
I could only guess that any elevation in blood sugars might be causing increased inflammatory response, thus requiring higher meds. Dietary adjustment or insulin dosage changes might be needed, so hopefully you can go th dietary route by the time your next tests are taken.
Hi Deborah. Whatever it is you have, the dose you are on isn't managing the inflammation. Are you still on 15mg? Did the ESR fall with 20mg? If it was falling but still elevated you should have been left on 20mg until it was "within normal limits" - but you do have another problem with the diabetes. Pred often messes up BS control because it alters the way the body metabolises carohydrates - have you been told to limit your carbs quite strictly to help? That does help some people and the American Diabetic Association has recently approved a low carb diet as a medium term means of managing diabetes - that may be worth discussing with your doctors.
If you have OA in your knees 20mg of pred would almost certainly have helped that - a lot of people find that as they get to low pred doses their OA pain returns, much to their dismay because they then have to find another way of pain relief.
As to your back and hips - it is possibly you have something called myofascial pain syndrome which is also due to inflammation caused by cytokines and is also helped by higher doses of pred. Google it and see if it makes sense. The cytokines form concentrations around trigger points - which are found in the shoulders about between where your bra strap sits and your neck, alongside the spine at about rib level and in the lower back about where the dimples on your bottom are. These can cause muscle spasms which, in turn, pinch nerves and cause referred pain - in the shoulders and neck, around the ribs, into the hips and thighs, not always all of them. It is often found alongside PMR but can also happen on its own and often is confused with fibromyalgia. It responds better to local cortisone injections but will also improve with higher dose pred. You can also use manual therapies such as manual mobilisation by a physiotherapist or Bowen therapy which relieve the muscle spasms.
Fibromyalgia doesn't cause raised inflammatory markers - it isn't a muscle problem, it is a problem with pain perception in the brain - so obviously there is something else going on. What were your symptoms pre-pred and how did they respond to the 20mg pred? Were they 70% better within a few days?
A group of rheumatologists in Bristol, UK recommend a way of using pred to decide whether what the patient has is really likely to be PMR: the patient is given 3 weeks of tablets, the first week is vit C which won't do anything, then a week of 15mg pred and then another week of vit C. If it is PMR the symptoms will improve dramatically in response to starting the pred and then return to the original level in the same time frame when the pred stops. If there ISN'T this dramatic improvement then another diagnosis must be considered and the patient referred to a rheumatologist - because there are several things that can look like PMR but aren't and don't respond to pred in the same way.
This is described in the "Bristol paper" which was written by this group to assist GPs in diagnosing and managing PMR and you will get a link to it in the first post of this thread:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
I would suggest taking it to your GP and discussing it and your history with him.
And if you can afford it - look locally for a Bowen therapist and give that a try.
Hi Eileen,
pre pred I was in a really bad way with my fibromyalgia and and OA. I had to use a stick as my knee was so painful. I had pain in my neck shoulders, upper arms, thighs, buttocks, hips and lower back. I also had horrendous fatigue and would fall asleep as soon as I sat down. When I first took 20mg pred it took about 3 days to start to take effect and I would say I had about an 80% improvement in pain and 100% improvement in fatigue. I think the doctor reduced me to 15mg pred after 2 weeks. I have been having blood tests every 4 or 5 weeks and the inflamatory markers have changed very little. The last time I saw my gp I expressed my concern about the effect the pred was having on my diabetes and he said he wouldn't take me off the pred due to the risk of blindness. I asked if he planned to refer me to a rheumy and he said that he would manage my condition himself. He hasn't given me anything for my bones which also worries me.
I wouldn't worry about the bones for the moment except you do really need calcium and vit D though MrsO managed without even that! You do need a dexascan soon though - you may not even need anything other than calcium/vit D. That is all I've had.
Given your response to pred I'd say that it probably wasn't fibromyalgia that was causing your problems since fibro doesn't respond to pred BUT I also don't think your GP knows what he is doing. If you only have the symptoms of PMR that does NOT mean you will go blind if he stops the pred - only about 1 in 6 of people with PMR go on to develop GCA. IF the blood tests remaining high are a sign you actually have GCA then 15mg isn't enough - and GCA belongs in the hands of an expert.
If you are getting increasing pain despite 15mg pred you need to go back to 20mg to see if that works for you first. Whether it does or doesn't, he then needs to refer you to a rheumatologist as an emergency (not urgently, that takes far too long) because of your diabetes. For some people it is possible to use other drugs which allow a reduction in the pred, it works for by no means everyone but they are worth trying for a diabetic and they can only be used by a rheumatologist. Your GP can manage you with pred - but he can't use anything else.
Have you someone you can take with you when you go to see the GP? Or is there another GP in the practice you can see? Either way, make it clear you wish to be seen by a rheumatologist as a matter of urgency because at present you are not being managed well, neither with regard to the possible PMR/GCA or your diabetes - which is far more concerning to me. PMR doesn't kill or cause long term damage in the way poorly managed diabets can and, although it CAN turn into GCA that needs to be in a specialist's hands.