Confused.

[Oscardoggy]

Morning all,

I was diagnosed with Polymyalgia onset Rheumatoid Arthritis in Dec 2020 which came on suddenly . I was prescribed 15 mgs Prednisolone and symptoms improved markedly within 2 days. I was also prescribed various other medications for RA. I have been on varying doses of Prednisolone since diagnosis, the highest being 30mgs, the lowest 6 mgs. I am currently on 12.5mgs.

My question is, does my original diagnosis mean I have 2 separate conditions - PMR and RA which require different treatments.

It was my understanding that the only treatment to manage symptoms of PMR was Prednisolone or is RA medication effective for PMR. I am currently prescribed Retuximab, Methotrexate and Prednisolone.

Thank you for reading my post and hopefully I will get some answers.

[PMRpro Ambassador]

It depends - PMR and RA are two different conditions and for some patients with PMR only pred will manage the symptoms. For others with PMR, methotrexate will have a brilliant effect, reducing the need for pred. But PMR is a form of vasculitis on a spectrum of disease including LVV and GCA while RA is an inflammatory arthritis which generally affects joints not blood vessels. PMR also affects the synovium, the lining of joints, but doesn't result in the same sort of erosive damage that RA does. The so-called DMARDs, including methotrexate, stop this damage which is why they are used but they don't necessarily deal with the synovitis in PMR. Leflunomide also sometimes works extremely well in PMR - but not always. Pred is also sometimes used in RA, mostly at a low dose to reduce morning stiffness.

There is now a range of biologics which are used in RA, with differing targets. Most of them don't have any effect in PMR - except tocilizumab and the other biologics which target the IL-6 cytokine which work very well in PMR/GCA, getting half of patients off pred altogether and getting the rest to a much lower dose of pred.

Rituximab isn't usually used in PMR/GCA - but at a meeting last week, Prof Dasgupta and co were saying that there is some thought it may be useful, it is used in some forms of vasculitis already.

So the answer is - as usual - complicated. Your doctors feel they need to use the three drugs. A clinical trial found that rituximab plus methotrexate slowed disease progression in the joints in the first year of treatment in more patients than using MTX alone - and that is the aim in RA, to slow disease progression and joint damage, There is no such joint damage in PMR - that's what the pred is for. If the rituximab and MTX do have an effect on the PMR - you will be able to taper the pred dose better than if they don't.

Does that help?

[Oscardoggy in reply to PMRpro]

Thank you PMRpro for your very prompt informative reply. As you say, it is complicated but, yes it has really helped. My consultant suggested Tocilizumab but I was deemed unsuitable by the MDT due to pulmonary fibrosis.

Thank you again.

[PMRpro Ambassador in reply to Oscardoggy]

Right - that's a shame. On two counts - the pulmonary fibrosis as an added extra and the TCZ would probably have saved the pred. But if you have lung problems - is MTX a good idea either since it can lead to lung problems, albeit relatively rarely.

[Oscardoggy in reply to PMRpro]

Both respiratory consultant and rheumatologist say that the cause of the PF is due to RA and not MTX and was worth the risk prescribing. I am also taking Nintedanib to slow the progression of fibrosis. I was really disappointed I couldn’t have TCZ. I didn’t fare well with Retuximab ending up in hospital within 2 days of infusion with pneumonia and still having both PMR and RA symptoms when I reduce Pred.

Where to next, I wonder.

[PMRpro Ambassador in reply to Oscardoggy]

Who knows - rituximab can be pretty unpleasant I gather. So can anything if you are the poor sod it turns round and bites though. Where did you start to flare the PMR symptoms as you reduced the pred? Was the rheumy assuming it was all going to go well when you were on the other stuff?

[Oscardoggy in reply to PMRpro]

Initially the rheumy was assuming all would be well once I started MXT and started reducing the pred. However, 2 DMARDS, 3 biologics and several attempts at reduction later I am no nearer now than I was almost 4 years ago. I did get down to 6 mgs using the DSNS but now can’t seem to get below 12.5mgs.

[PMRpro Ambassador in reply to Oscardoggy]

I struggled to get under 10mg pred for the first few years and then it suddenly let me get to 4mg. And just as suddenly came a flare and I had to go back to 15mg which was a disappointment after about 6 or 7 years. Since then it was always a struggle. I tried MTX and that was awful, I lasted a month! But since then I had really struggled to reduce - all MTX seemed to do was make pred affects worse - and I even experienced a couple I'd never had on pred alone! Then during Covid and my husband being ill, I needed more and more to be able to function and after he died I had a massive flare. In the end my rheumy here put me n TCZ - and with that I'm down to 7mg pred but can't get under that. After 2 weeks on 6mg I get awful bicep tendinitis and can do nothing with my hands which isn't very practical when you live entirely alone!! At 7 and (I hope) TCZ every 2 weeks I am stable. That will do me.

[Oscardoggy in reply to PMRpro]

Sorry to hear about your husband and that you have struggled so much. It sounds like it’s been a long haul for you but glad you are now stable. I wish you well.

[PMRpro Ambassador in reply to Oscardoggy]

Don't get me wrong - I didn't struggle as a person, the struggle was with the pred!! I have never compromised on the pred dose, I took what I needed to function and luckily my doctors here in Italy all are more concerned about quality of life than getting the pred to a low level come what may. It took TCZ to get the dose lower and I'm pretty sure in the UK they'd still be pushing at me to get to lower pred. However after 15 years on pred, my adrenal function isn;t particularly sprightly either!!