Is it PMR?

[Aamar]

I've recently been diagnosed but cannot take steroids due to having being hospitalised with pneumonia with complications 6 months ago - I've been told I could end up back in hospital if I take steroids.

I started taking high strength turmeric capsules and fish oil a few weeks ago. After a few days I felt a lot better - the continual pain in my head and jaw had disappeared and I felt less pain in my shoulders and legs but it has come back with a vengeance over the past week - I have so much pain in my shoulders and legs although the headache is not so bad and the jaw pain a lot better. I have had a rather chocolatey Easter though so plan to alter my diet dramatically to see if that will help. I believe I've had a slow onset of PMR since last June when I started to feel achey and tired - this was not normal for me as I was always on the go. I'm 47 so do not fit the age profile either however since I have been "diagnosed" I have become aware of 3 other under 50's being treated for the condition, including my brother-in-law.

My chest consultant is sceptical that I have it as high levels of inflammation are common with pneumonia but I am recovering from the pneumonia but feeling worse and worse genetally. My GP said the only way to find out for sure if people have PMR is see how they respond to steroids but this is not an option for me so it's a very "rough" diagnosis. I have a full time job and two kids and for the first time in my life am really struggling and feeling low. I'm turning down social invitations as I have to dedicate what ability I have to my family trading off one job/activity for another most days. I don't know if the pneumonia caused the PMR or the PMR caused the pneumonia - haven't read any incidents of either. Woyld lovevto hear from people in similar situations.

[PMRpro Ambassador]

Are you in a position to see another chest physician about the use of steroids after pneumonia? It seems strange to say you cannot have a moderate dose of pred because of the pneumonia - my husband has had steroids after pneumonia. But I'm not a chest specialist.

Your GP isn't entirely correct - the response to pred is NOT a reliable confirmation that the symptoms are due to PMR and nothing else, it is just an additional piece in the jigsaw. Under the circumstances, I think you need an emergency referral to a rheumatologist as a complex patient with an atypical presentation of possible PMR.

But stress isn't a good scenario for PMR - and working full time isn't helping either. Are you not in a position to take sick leave?

[Aamar in reply to PMRpro]

Thanks for the reply and the information. I'm seeing the doc on Fri so will ask for a referral to a specialist. 're work, I had 3 months off with the pneumonia and although my boss is very supportive when I'm not therefore work doesn't get done so I just end up having a mountain off work when I return. I think the distraction of work is good for me anyway - takes my mind off the symptoms and I feel productive. I've now been off work since before Easter and it's the worst I've felt so far so I'm either doing too much activity and getting fatigued or not enough and getting stiff! We'll post again when I've seen the doc

[daisylazy]

Well I had pneumonia last year and nobody mentioned coming off pred. I was on 3mg at the time. I took the antibiotics for the recommended period and the pred also.

[Aamar in reply to daisylazy]

That's good to know - will mention it to my doc on Fri

[PMRPanda]

I am in a similar situation except no children. I am finding that pacing myself and lots of rest are essential. Stress makes a massive difference. I’m also taking CBD oil for the pain, I don’t know if that’s something you can take with your chest issues?

Have you been referred to a rheumatologist? I have my first appointment next week and can feed back if you would like?

[Oumaof2]

Hi Aamar.... I had a persistent chest infection for 4 months in 2017 through to March 18.... 5 courses of anti bi's and an x-ray to check for TB.... Never felt so bad!! Developed shoulder pain in the January which GP thought was frozen shoulder.... Saw a physio but he was unable to relieve it . Then 5 weeks of increasing and pretty much intolerable bi shoulder, neck, hips, and legs which didn't want to work.... Plus the debilitating fatigue! My younger son was over from New York in the midst of all this.. When I had problems moving to stand from sitting at dinner table, the fear in his eyes made me feel so awful.... GP diagnosed PMR but said I couldn't have Prednisolone until chest had cleared, as they would interfere with my immune system? Eventually after 5 weeks I had to beg for something to help and was given a script..... Within 12 hours pain was diminishing and was gone in 24 .... Stiffness and fatigue varies.... Sorry it's a saga, but yes, I'm convinced chest infection was the cause of PMR.... Sorry you're going through this.... Prednisolone is the only thing that will help you be at least pretty much pain free and enable you to have a 'different' kind of life.... ... It must be even more difficult when you have a full time job and children to look after.... The experts will have advice for you shortly... Good luck, let us know how you're getting on... Best wishes... Lena 💐

[Aamar]

Hi all. Seen the doc on Fri. He thinks I have "unresolved pneumonia" so has referreeed me for a CT scan. He's going to refer me to a rheumatologist after I've seen the chest consultant on May 21st (provided I have my CT scan by then). I'm on long term medication for another condition which can cause steroids to over-react so he has changed those to ones that are better tolerated, bit again, advised me to wait till chest investigations have been done. I'm obviously terrified about the CT scan - they'll be looking for tumours and all sorts of nasties but maybe I will get everything sorted once and for all. Have an appointment with an acupuncturist at end of May too. Maybe by June I'll be out on my long jaunts again....

Thank you all for your replies - it makes such a difference talking to people who understand. Will keep you posted on progress