Hello everyone

[AnnaColuthon]

I was diagnosed with PMR at the end of January after several months of aching joints with limited mobility, particularly in my shoulders. After a week of steroids the mobility in my shoulders returned to normal and my hips and knees were fine. I was able to resume doing my weekly 30 mile cycle ride. Fatigue is not an issue so I guess I have a fairly light version of PMR which came on after a Covid jab in October.

I was told to take a 15mg dose for 3 weeks and then taper to 12.5mg. Other than that I was given no advice and only know more because I have read this site very carefully. I decided that, although it appeared from the posts here that the doctors advice was optimistic, I would stick to it. The pain in my right shoulder came back in two days so I went back to 15mg and contacted the doctor by online message. I have a face to face appointment tomorrow about 9 days later. I have stayed on 15mg but the pain has not gone. I guess I should have gone up by 5mg instead of just back to 15 as recommended here. I will see what the doctor has to say. I am seeing a different one to the one who set me off on this.

I have been prescribed no other medication to combat the side effects. Should I have been? I will be asking about that tomorrow. I'm not keen to take alendronic acid but the others that seem to be prescribed would be ok.

Any comments will be welcome.

[PMRpro Ambassador]

Hi and welcome. The version of PMR that appears after a Covid vaccination does seem to be a lighter version and generally seems to not last very long. Let's hope that applies to you.

If the pain is just in one shoulder - have you done anything that might have injured it? Even holding a position on your bike ride? Your soft tissues around joints are inflamed and, as a result, tend to injure more easily.

My view of the add-on medications is that calcium and vit D are essential and preferably more vitamin D than you find in the supplements (I take 4000 IU). I wouldn't start a bisphosphonate without having had a dexascan and being shown I was verging on osteoporosis - and if you need a bisphosphonate, then you first need a thorough dental check up and any potential invasive problems dealt with first. I have never taken a PPI (stomach protection) except when there was another reason for needing it (a need for NSAIDs and after a cardiac ablation recently). They have their own adverse effects and I find them quite unpleasant to be honest - they also contribute to developing low bone density. Is there anything else> I've never taken any!!!!

[AnnaColuthon in reply to PMRpro]

Thank you so much for the reply. I saw a, clearly, very junior doctor who was a lovely young lady but didn't seem to know too much about the realities of taking steroids. She told me I didn't need to take any other medication but she wanted to consult her senior before finalising. I left the surgery waiting for a phone call which turned out to be a text in which I was informed I had been prescribed the chewable calcium/D3 and Alendronic acid. There had been no discussion about AA in my talk with her. As far as they knew I knew nothing at all about it and suddenly I was expected to take it just because they said so. I phoned back and explained what I knew and that I would not take it 'just in case' until there was evidence of need. I asked about a Dexascan but she clearly wasn't going to give me one of those. She did however agree that it would be ok for me not to take it given my test results so far and another blood test in a month's time. So we have put it on the back burner for future review. Without HealthUnlocked I would be in total ignorance about how to handle all this and am clearly not going to get much help from my GP. They have agreed though that I can taper more slowly from 15mg given that the 2.5mg drop seemed to be too much.

[PMRpro Ambassador in reply to AnnaColuthon]

The average GP doesn't appear to know a lot about medications and PMR! We aim to educate ...

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Maybe have a look at this intro/info post - quite a lot to take onboard, but hopefully will help..

healthunlocked.com/pmrgcauk...

..and maybe on the pacing links within it...

You should have been prescribed a VitD/Calcium supplement - but hold back on the AA unless you have a DEXA scan that proves you really need it.

You may be lucky in that you have a "lighter" version of Covid than many - but you still need to be conscious that it is a serious systemic illness and needs to be treated as such.. and the early days of Pred may give false energy - hence the reaction to your 30 mile cycle ride.

You may need a slightly higher dose, but you also need to realise, just because you are on steroids it doesnt necessarily mean you can ignore the PMR.. it needs to be managed.

[AnnaColuthon in reply to DorsetLady]

Thank you so much for the reply. I saw a, clearly, very junior doctor who was a lovely young lady but didn't seem to know too much about the realities of taking steroids. She told me I didn't need to take any other medication but she wanted to consult her senior before finalising. I left the surgery waiting for a phone call which turned out to be a text in which I was informed I had been prescribed the chewable calcium/D3 and Alendronic acid. There had been no discussion about AA in my talk with her. As far as they knew I knew nothing at all about it and suddenly I was expected to take it just because they said so. I phoned back and explained what I knew and that I would not take it 'just in case' until there was evidence of need. I asked about a Dexascan but she clearly wasn't going to give me one of those. She did however agree that it would be ok for me not to take it given my test results so far and another blood test in a month's time. So we have put it on the back burner for future review. Without HealthUnlocked I would be in total ignorance about how to handle all this and am clearly not going to get much help from my GP. They have agreed though that I can taper more slowly from 15mg given that the 2.5mg drop seemed to be too much.

[DorsetLady PMRGCAuk volunteer in reply to AnnaColuthon]

Trouble is AA is listed in guidelines, so it’s very often automatically prescribed -but it not required for all. But it just makes life difficult for patients when you have to have to question everything,

Hopefully your young GP can learn from you… 😊