PMR flare

[Graciejack4]

Hi all

I have PMR and GCA which up until now have been under control, I’m on Methotrexate and Tocilizumab and currently 1mg Prednisolone, but I’m having joint pain at the moment in mainly one shoulder and my knees ( not had any issues with Knees before). Would this be the start of a PMR flare? I’m having my bloods taken on Tuesday.

[Oxfordboy2]

Like you I have GCA but no pmr.Being treated with Methotrexate only at 15mg once a week.Would you mind telling me how much MTX you are taking and for how long.Sorry I can’t help with your flare question as I have never experienced a flare when on meds.

[Graciejack4 in reply to Oxfordboy2]

Hi I’m on 10mg of Methotrexate for the last two years along with the Tocilizumab.

[DorsetLady PMRGCAuk volunteer]

It may be, but could be something entirely different..time will tell...

[piglette]

Have you tried taking painkillers to see if they help? If they do it is probably not a PMR problem.

[PMRpro Ambassador]

Difficult to say since joints aren't normally what you think about with PMR, the inflammation tends to be in soft-tissue around the joints. But pred also masks OA pain though I'm not sure that tocilizumab does.

[Sharitone]

Is is definitely the knee joints? Or could it possibly be the tissues round the joints? That is how a flare last year manifested itself for me - painful swollen knees that a little bit of OA could not really account for. along with other sore muscles, of course, but this was the first time @I had problems with the knees.

If you're on TCZ, ESR and CRP probably won't show a lot of inflammation. any chance of a knee XR?

[Golf-1]

I can only comment on my experience rather than give factual advice.

I was first diagnosed with PMR in March 2022, my GP recognised the symptoms and started me on 20mg of Prednisolone, and gave me a "loose" tapering schedule that went to 17.5mg after 4 weeks, then 15mg after another 4 weeks then 12.5mg for 4 weeks then 10mg for 4 weeks. His proposal was to then reduce by 1mg per month until I reached zero.

Meanwhile I found this forum and read a lot of very useful information and realised;- as was often advised ;- that the aim was not to get to zero asap but to manage PMR by taking as much Prednisolone as necessary to control the PMR pain whilst continuing to reduce Prednisolone if you can.

In March 2023 I had my first appointment with a very experienced Rheumatology Consultant, who explained that he was prescribing Methotrexate to run alongside the reducing dose of Prednisolone with the aim of eventually being able to stop Prednisone and continue with Methotrexate, which apparently has far fewer side effects. to control the PMR.

I have currently reached 6mg of Prednisolone for the 3rd time, am on holiday for next 5 weeks so am staying at that level until I return to UK. Both GP and Rheumatology Consultant agreed to this approach. Also, as I was ill with sickness and diarrhoea about a week before going on holiday the Rheumatologist suggested I stopped taking Methotrexate until I return.

There are apparently no side effects to stopping Methotrexate for a period, unlike the problems you may 🤞🤞🤞🤞🤞🤞🤞🤞suffer if you stop taking Prednisolone

My experience tells me that there are no hard and fast rules with PMR sufferers, a lot of talk with your GP, and if possible a Rheumatologists, but finally what your body tells you.

If you are in pain, take a little more Prednisolone for as short a period as possible, and get as much advice as you can from the very helpful contributors to this forum.

I have been on 6mg without Methotrexate for or over 2 weeks now without any side effects, I intend to keep at this level for at least another 4 weeks 🤞, I am then booked in for further blood tests, results will tell me where to go from there