Hello Experts on the Forum, it's been a while since I posted. I was originally diagnosed with PMR in March 2021 after a year of fatigue, pain and immobility. Started on the Pred (the devil's tic-tac as a friend aptly calls it😊) - 20 mg and within 3 days felt like I was back to where I was 18 months previously. Finally got to see a Rheumatologist semi-privately who decided it wasn't PMR and bounced me off the Pred quite rapidly. (definitely not to be recommended). Was OK for about 3 months then the dreaded PMR symptoms returned. Back on the Pred - symptoms eased, saw a new GP who suggested fibromyalgia because my inflamation markers weren't raised - even though fibromyalgia doesn't respond to steroids. Took me off the pred as he said I had been on steroids for too long and was concerned about diabetes - symptoms obviously returned. (Although I know many members of the forum have been on pred for years and I am not aware of any diabetes issues). Referred to NHS rheumatologist in November 2022 who immediately agreed it was PMR and thought the prior relapse was due to coming off the pred too quickly so am on the weaning programme until September. Not got total faith in this rheumy though as he is also of the opinion that PMR usually only lasts 2 years🤔. However, have since been diagnosed with CLL (chronic lymphocytic leukemia) - many symptoms are very similar to PMR. Asked the Hematologist if the 2 could be related. She said I definitely had PMR and CLL and didn't 'think' there was a link - although both are auto immune diseases. Am awaiting the outcome of tests but just wondered if anyone else had anything similar. Apologies if there have been posts on this but have been off the radar for a while.
PMR and CLL: Hello Experts on the Forum, it's been... - PMRGCAuk
PMR and CLL
Strangely enough, my Gp has just mentioned this condition to me as a possibility because my lymphocytes are raised. I will have another blood test in 6 weeks’ time as a check. If it turns out that I too have this, I will be in touch!
I’m sorry you have been getting such a run around with the doctors. Just demonstrates how little they understand and how we have to become our own advocates!
Definitely have to be our own advocates. I pushed for the blood tests (even though the first rheumatologist who said I didn't have PMR wrote to my GP in July 2021 and said that my lymphocyte levels should be monitored - they weren't). Then I had to chase the results for 2 weeks and was told twice by the receptionist at the GP surgery that my results were all clear - tell patient no further action...... they hadn't even received my blood test results which actually recommended a hematology referral as a blood film showed rogue cells. Yes we have to be as pro-active as we can. Which is why forums such as this and the 'experts' that offer advice and support are worth their weight in gold.
There are diabetes concerns as prednisolone can spike your blood sugars. It does mine and there are members who have steroid induced diabetes
Thanks Koalajane - I wasn't aware of the diabetes risk before - my GP had mentioned blood pressure and raised cholesterol possibilities.
There may be a link in that once you have one a/i disorder you are more likely to develop a second. I don't know of any other though at present.
There have been a few that have mentioned both since I joined. Also HU CLL site has some with both.
Regarding diabetes I have the blood test HbA1c every year, although I do not have diabetes, but recommended if taking steroids. My result is 37.
Me too - 37 for me too last time and that is after 13 years on pred 
Just looked - mine was 37 in October 22 and 39 in January this year. This is why I feel that forums like this with people that actually live with the PMR and pred have so much to offer - the medical professionals, although not to be ignored, often have less rounded knowledge maybe. My GP and rheumatologist are adamant that I need to come off pred as I shouldn't be on it for too long - but pred is the only thing that gives mobility and relieves pain......And then I read that members like yourself have been on it for 13 years🤷♂️
What dose are you on? There are millions who are on pred at lower doses for life - it is used for adrenal insufficiency , often it is hydrocortisone but many patients tolerate pred better and is once daily dosing which ALWAYS improves compliance, 2x daily is OK-ish but 3x is a pain. So for many of us it is fulfilling 2 purposes. And what is wrong with ONE drug once a day compared to experimenting with patients response to "steroid sparers" which don't work for a majority of the patients put on them and come with their own adverse effects?
I am adamant that the greatest unmet need in PMR is a reliable diagnostic test - preferably a biomarker that can be used to monitor disease activity. Then the next thing is to optimise the use of pred - which is fine for the vast majority of patients when they know how to reduce or avoid the adverse effects. And dietary advice is crucial - cutting carbs has 3 effects: it reduces the risk of steroid-related diabetes, it reduces the likelihood of weight gain and sugar is very pro-inflammatory.
I'm currently on 5 mg of pred and am tapering 1 mg per month - should be finished in September but am keeping an open mind (and a supply of pred) until all the results of the CLL are in. I did listen to my new GP in November and against my better judgement stopped the pred and went on Amitriptyline as prescribed for fibromyalgia whilst awaiting the appointment for the rheumatologist. I felt I had to give him the benefit of the doubt. That done after nearly 3 years I was definitely convinced it was PMR which the rheumatologist confirmed. Am now in turmoil again over the CLL but will await the results and see. But will definitely take on board the dietary advice. I did lose 10 kilos last year but it has come back on now. Not sure if it's starting the pred again or me just being plain piggy, but I know I have to cut back on the carbs and sugar - which I did before and it worked. I will keep the pred in store tho - am not prepared to be crawling around on the floor in pain again so will adjust the dosage if necessary (with consultation with the GP of course). Thanks again
Just stopped the pred? Cold turkey? At what dose?
worth drastically reducing carbs...eliminate all sugars (also fruits with high sugar content...and NO fruit juices) ...it helps prevent pred induced diabetes from kicking in...I was on the edge and being montored ...dietary changes made the difference.
Thanks agingfeminist - definitely will get my sugar/carb craving under control
I had a blood test in December that showed lymphocytosis with hairy cells. I had to have another test so haematology could count the cells, but this test was normal. It's all rather confusing. I'm due another test at the GPs next week but my recent test at my my rheumy appointment didn't flag anything except my ESR is now 40 and CRP 20. Rheumy is not worried about this as I am largely symptom free, and told me to keep tapering by half mg a month and to see him in 4 months.
hi Broseley. Lymphocytosis is the pre curser to CLL although you can wait many years for it to become full CLL. Neither will show on the rheumatologist blood tests. And if it does would they wouldn’t recognise it because they focus on CRP and ESR
If your GPs tests start showing signs again ask if they will send results to a haematologist for comment. My GP did this for a couple of years before I actually needed a referral. As you don’t usually feel ill with CLL in the early years you can ignore the signs. Especially as PMR is so awful that it dominates our thinking. Good luck.
Thanks, that's helpful. GP had no idea!
Hi keeptalking, my CRP and ESR levels have mainly been low which is why they were reluctant to diagnose PMR. My lymphocytes and white cell count have rocketed and come down again a few times - which the GPs always attributed to infection or virus, but the test last month showed smear cells suggestive of CLL. Saw the hematologist and am awaiting result of flow cytometry test. Would like the PMR to dominate my thinking at the moment I have to confess.
It SHOULD show on monitoring tests because once in a while they should be doing a FBC and diff - a full blood count PLUS differential count on a smear, especially if the white count looks a bit dodgy.
I too have both conditions CLL and PMR. Diagnosed in the same year 2018. After 5 years I am finally off pred. and are much better generally.
However I still have extreme tiredness from time to time and I have aching which eases with paracetamol. I don’t think it’s a flare of PMR and am constantly confused whether it’s the CLL causing this. My consultants seem to leave it to the other to decide. I just tell myself that whatever it is that’s causing it I just have to deal with it by gentle exercise and appropriate rest.
I'm hoping that when the cytometry results and any other tests for CLL that I can get are gathered in I can start focusing on what I need to prioritise on treatment wise and work out the best way forward for both conditions.
I came down with PMR in 2019 and was just diagnosed with CLL with a white blood cell count of 32,000. I also think there is a link between these two autoimmune diseases.
Anyway - a bit more searching found this
pubmed.ncbi.nlm.nih.gov/929...
and this
arthritis-research.biomedce...
where they looked for comorbidities and didn't find any link to leukaemias.
if your results do lead to a diagnosis of CLL then you would be very unlucky if you had to start treatment straight away. It’s more usual to be put on ‘watch and wait’ or as some call it ‘active monitoring. I’ve been on that for 4.5 years. Not everyone needs treatment. Health Unlocked have a very good CLL site so have a look at that. It’s very reassuring.
Have signed up for that one too - hematologist has diagnosed CLL but waiting for the cytometry to see how far it is. I just worry about the liver and spleen and feel that I would want a scan now for peace of mind, then maybe I can settle and get on with managing it. That's the pessimist in me I suppose.
I quite understand where you’re coming from. I was exactly the same when first diagnosed. HU helped me settle down. Keep us in the picture.
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