@Unclejack
My PMR came on suddenly in January 2021, one morning I could barely get out of bed. The pain was around hips and shoulders, legs were suddenly weak. At first my GP prescibed prescription strength Co-codamol but that didn’t do a lot to help. My bloods results showed CRP 129 (a measure of inflammation) on 23/Feb, 94 on 03/Mar. Finally after 7 weeks he called me in to the surgery on Friday 12th March, prescibed 15mg/day of Prednisolone and asked me to come back on Monday 15/Mar. When I went back I was able to report a dramatic improvement. Bloods taken that day showed a CRP of 18.
If PMR is confirmed for you then Physio will not do much good and you need a therapist who understand PMR. I have been given a series of gentle leg strengthening exercises. Also OTC pain killers like Paracetamol will generally do very little to help PMR pain, this is another indicator on the condition. (If you are on Prednisolone then you have to avoid NSAIDs like asprin & ibuprofen do to the risk of stomach bleeds).
My Chronic myelomonocytic leukaemia (CMML) was discovered when my eagle eyed GP noticed that my Monocytes count had been raised out of range for some time and referred my to Haematology. They took loads of blood, some of which had to be sent to a specialist lab in Oxford. When I went back 7 weeks later I was given the Chronic myelomonocytic leukaemia (CMML) diagnosis, which was a bit of a shock. But I haven’t let it worry me. I’m 80 and I found a paper on line which indicated at my age that the chance of Chronic myelomonocytic leukaemia (CMML) transforming into Acute myeloid leukaemia (AML) before some other disease caused death was of the order of 13%. I am on “watchful waiting”, to be checked every 3 months. The high Moncytes first became apparent towards the end of 2020 so the consultant thought the Chronic myelomonocytic leukaemia (CMML) started around then.
I have been experiencing some of the symptoms of Chronic myelomonocytic leukaemia (CMML) for some time but PMR/Prednisolone cause very similar symptoms so I had accepted them. I bruise very easily and have purpura on the backs of my hands and forearms, both of these are also caused by steroids.
You can read a lot about PMR on the forum I have indicated, there are a lot of FAQs packed with useful information. One recurring topic is on tapering Prednisolone, which mant GPs and Rheumatologists just don’t seem to understand. On higher doses your Adrenal glands go on holiday as your body is making enough Cortisol via the cortico-steroids you are taking. Once you reduce Pred to around 5mg and below, the adrenals start to wake up. At this stage, you tend to experience fatigue. Some refer to it as “deathly” fatigue although I have to say that I hav’nt got to that stage (I’m on 5mg). The fact that Chronic myelomonocytic leukaemia (CMML) also causes fatigue is a bit of a double whammy. I find I need to rest and have a nap every afternoon. If I have had a busy day then the next day needs to be a rest day.
Best wishes to you.
AJBass (Arthur, from South Buckinghamshire)
Hi @AJBass Welcome, I would like to know a bit more about you and how you are doing in yourself you have had a lot going on medically?
Look after yourself
@AJBass
Hi Arthur,
I have just noticed my reply to your excellent post possibly didn’t get through. Never mind. You and others have enlightened me to a illness I never new existed. My GP who is excellent mentioned this but I thought just wear and tear arthritis. X-rays highlighted mild osteoarthritis and calcification of ligaments etc. Anyway I was diagnosed with Chronic myelomonocytic leukaemia (CMML) in May 2023. I had symptoms starting in January 2022. Regular blood tests showed a roller coaster of results. In April 2023 a bone marrow biopsy confirmed diagnosis. On watch and wait and still OK. since diagnosis I try and stay away from medication. I have a tooth that needs extraction but it will be a hospital job due to low platelets and a possible platelet transfusion. So I’ve decided to put up with it as long as possible. I only take paracetamol for pain, but they have little effect.
I apologise for the late response but my phone is always acting up.
Once again thanks for your advice.
Best wishes unclejack.
Oh @Unclejack it must be miserable living with that pain and I feel rotten on paracetamol.Be kind to yourself
@Erica
Morning Erica
If I’m very careful and not eating on that side I can just about live with it. It’s the thought of hospital and how long to get it sorted and a transfusion that stresses me.
Once again thanks for the support.
Best wishes unclejack.
Hello @Unclejack, what is your crazy diet you mentioned? Is it to contain inflammation? Or somethinng entirely different? 
Thank you!
Hi @Koshka a great big welcome to our forum
Personally I would say to consult a dietician, your nurse or medical team before making any changes to your diet, some things can react with your medications, blood test results etc. as I have recently found out with conditions I have.
Some things are also OK for some people and not for others.
I look forward to hearing more about you so please do keep posting. Be very kind to yourself.
@Koshka
Morning Koshka. Firstly I am on watch and wait and taking no medication. Perhaps best to mention new foods to clinicians in case of interactions. Breakfast. large bowl greek yoghurt, sliced banana, blueberries. Followed by large bowl of porridge with raisins and sprinkle of ground cinnamon. One square of 85 percent choc melted in a mug. Pumpkin seeds. 2 tablespoon of extra virgin olive oil. Glass of pure orange juice. Followed by exercise. VitD supplement and multi vitamins. One Brazil nut, one walnut. cup of camomile tea 2 cups of green tea.
Lunch salads/normal roast dinner often with liver. More cups of green tea. Tea. Mackerel in olive oil. Or eggs 6 a week. Another square of very dark choc melted in a mug. More green tea.
Fruit and veg dark leaf varieties. Carrots. One teaspoon of marmite. Edam cheese. Just started probiotic drinks. I watch my weight and stable at 12 stone. Cholesterol 1.9. concerned about that but haematology consultant insists I carry on taking statins! Although my blood tests are abnormal they are stable. I am not recommending my diet always have a chat with the medics about diet. I was told at diagnosis that average prognosis was 8 to thirty months. And only cure was a stem cell transplant and I am to old for that. Perhaps I am tempting fate but I now do not catch many infections or colds. All the foods I eat are high in ANTIOXIDANTS AND ANTI-INFLAMMATORIES. I say again I am not on any medication and I have no treatment options.Thats the reason I started this diet back to the wall situation. There are Chronic myelomonocytic leukaemia (CMML) patients who have survived many years beyond the 30 months estimate and I myself wouldn’t have a clue I’m ill but for those abnormal blood tests. I myself have had this for three years (since the onset of symptoms)PLEASE SEE MEDICS TO CHECK ON ANY DIET CHANGES BETTER SAFE THAN SORRY
Very best wishes unclejack. Merry Christmas.
P.S. the food I eat is only related to my diagnosis of Leukaemia not polymyialgia which doctors couldn’t confirm. And I also realise there is no real evidence that diet can cure leukemia so always talk with your medics. I have made a attempt to boost my immune system and have tried to eat foods which could do that.Basically hoping to slow progression that’s my target.
@Unclejack Goodness! Thank you so much for such a speedy response, it’s incredible. I only asked as I changed mine 5-6 weeks ago to a very restrictive diet in the hope of controling my PMR. I stumbled upon this thread looking for Polymialgia information and it does say that at the top of the thread though the thread mostly relates to other conditions. I’ve stumble upon Rheumatoid Arthritis Solutions based in Australia. The founder has been struggling with RA for many years and developed his own way of treating or rather making it much easier for sufferers of this condition to cope with it. A few people who followed his approach were fellow PMR sufferers. He suggests a very restrictive and almost plant based diet (no sugar, no oils, no meats, no alcohol, no wheat flour) , again based on his own experience and the way he cured himself. So somehow I imagined yours would be something along these lines. Not an easy one to follow :-(. I tried talking to medics, afraid not much help there. Looks like we all have to try and help ourselves. Anyway, thank you so much for your reply, and hope it works for you. Happy Christmas and all the best for 2025!