Pain and frustration 😟

[Pangolin43]

Hello everyone,

Having finally dropped from 5mg to 4.5mg I am now in my fourth week. I have no shoulder or arm pain and was beginning to feel like I’ve finally cracked the 5mg barrier(third time lucky). I’ve had PMR for 2years and 9 months. However, my legs feel in constant pain and I don’t feel that I can walk far. My knees are swollen especially the right one and I have constant pain in my calves. The pain doesn’t seem to lessen at any point of the day but does respond to paracetamol. It doesn’t go away completely but eases. I’m unsure what to do. My rheumatologist has cancelled my forthcoming January appointment and moved it to the end of March. Unfortunately she has also relocated and I’ll be in the hands of a locus. I have an appointment with the GP today to look at my knees which after X-rays show mild wear and tear! I don’t know whether to ask for some 5mg tablets and increase for a while? My hands are also a bit stiff in the morning but that disappears.

My dilemma is, should I increase Pred or take painkillers? I don’t want to risk a flare but also don’t want to up the Pred if it’s not Polymyalgia and is osteoarthritis. I’ve booked a blood test for next Monday to check inflammatory markers. If it is osteoarthritis would they still be raised.?

I feel down and lacking in enthusiasm and energy. It’s having a big impact on me.

Any suggestions gratefully received. Thank you in advance.

[SheffieldJane]

It does sound a bit more like osteoarthritis especially as it responds to painkillers. I went through a phase of this ( my knees were so swollen) but it resolved, my Rheumatologist was going to inject the knees with steroid. If you are in a winter clime this does aggravate osteoarthritis. Tapering can expose our old arthritic pains. Your GP could offer you a morning cortisol test to see if your Adrenals are capable of functioning. 3 mgs of Pred would be a more accurate dose for the test though. Most people with straightforward PMR are treated at primary care level. I am sorry that this is dragging you down, do mention it to your doctor. Constant pain and winter weather is very lowering. I hope you get a solution soon.

[Pangolin43 in reply to SheffieldJane]

Thank you Sheffield Jane. I visited the GP today and she is going to refer me for further X-rays to the knees. It seems I have something called a ´bakers cyst’ (a small one) behind the right knee which can’t help things. You’re right about the cold weather, it really doesn’t help. Pre PMR I had no arthritic pains to speak of. That was almost three years ago and maybe it can progress very quickly. I’m going to have a blood test this Monday to see if CRP and ESR are raised. If they are I may treat this has having gone below the dose of Pred needed. Glad to hear you resolved your swollen knees. 😊

[SheffieldJane in reply to Pangolin43]

I have heard that Baker’s Cysts are very painful. So glad you are on the road to repair! X

[PMRpro Ambassador]

In your place I would do what I did do a few weeks ago: see what happens with a bit more pred. It worked very well for the excruciating back pain I have and which only responds to me using ibuprofen - and the Pain Clinic doc says no because of its effects on cardiovascular system and kidneys - even 1 tablet a day. She also is unwilling to do a steroid injection which in the past has also achieved a minor miracle because I am on anticoagulants. I can't continue at this level of pain and function. I upped my pred a few mg because I was travelling alone to the UK for a week and stress is a struggle at 6mg. And the back pain improved a LOT. The rehab doc this week won't do the other option of extracorporeal shockwave therapy for the bursitis that has also woken up until after I have had an ablation done in early January - if the docs aren't on strike!!! But he did provide another expensive option on prescription to trial - don't know if I can get an ongoing supply if it does work but I can't afford it OTC!

If you weren't in constant pain at 5mg - I would take that as acceptable at this stage of your PMR. Quality of Life is a very important factor. The idea of managing PMR is to treat to acceptable freedom from symptoms:

"The treatment target of GCA and PMR should be remission; remission is the absence of clinical symptoms and systemic inflammation.

This treatment target is similar to that of other T2T recommendations in rheumatology,13–15 and frequently serves as an outcome in clinical trials and observational studies of GCA and PMR."

ard.bmj.com/content/early/2...

It is something that gets forgotten amongst the panic about pred. But constant pain and disability because of inadequately managed PMR/GCA is as bad for you long term as doctors are convinced pred is.

[Pangolin43 in reply to PMRpro]

Thank you so much for the detailed response. I completely agree with you about the quality of life. 5mg is a low dose to live with and appears to be what my PMR body needs currently to be comfortable. After meeting with GP I have a plan. Blood tests on Monday will tell me if there are raised inflammatory markers. If so I will increase Pred immediately (GP supports this). As you say I can’t take ibuprofen. The GP suggested to try regular doses of paracetamol 4 x a day and then cocodamol if this doesn’t work. She feels it may be osteoarthritis because of where the pain is 🤔. Having asked for GP’s advice i will take it until the blood test results unless I start to feel worse. I’m feeling a bit better right now having dosed myself up with painkillers. My mood has already lifted. Your last comment about constant pain and disability is so true. You sound as if you are going through a lot yourself so thank you for taking the time to respond. All the best 😊

[Merryfield]

Pangolin, am in similar boat. Don’t know if in flare or wearing out my joints. Blood draw tomorrow.

[Pangolin43 in reply to Merryfield]

Hello Merryfield.

I’ll be intersred to hear you outcome

[Merryfield]

i will post it 🌛

[random901]

Down, lacking in energy & motivation & enthusiasm. Yep, that's me atm, Pangolin43! Oh - and volatile emotionally. So, had inflammation blood tests yesterday. Awaiting consultant's instructions (she blames preds for my woes). In the meantime, I am taking paracetamol and also dihydrocodeine once a day. The latter does not make me drowsy and is really effective.

[PMRpro Ambassador in reply to random901]

If dihydrocodeine works on your pain it does suggest it isn't due to PMR. Ordinary pain killers rarely have much effect - if any!

[random901 in reply to PMRpro]

Agree. But after this coughing virus my neck, arm and intercostal muscles are aching and painful. The codeine also has a calming effect on my IBS. Not an ideal painkiller, and potentially addictive, I know, but only taking short-term.