GCA, Pred tapering and shoulder pain

[Hazeleyes48]

I was diagnosed with GCA in April 2022 and have been up and down on Pred. Early last month I dropped from 10mg down to 9mg and since then I have had really bad pain in both my shoulders, back and knees. I’m waking up in the early hours in pain and am so stiff. I’m also getting hot sweats and have lost my appetite and my mood has been low due to the lack of sleep. I was told to take codeine for the pain but apart from making me feel sleepy they are having no affect on the pain. My GP arranged a telephone appointment with a physio this morning but he told me I needed to contact my Rheumatologist. My usual Rheumy is on annual leave until next week but the stand in told me to increase my Pred to 12mg until next week when I can speak to my usual Rheumatologist. Could the symptoms I am now experiencing be PMR? Just a quick note before I was diagnosed with GCA I did have shoulder pain but this went when I started taking Prednisone.

I would appreciate any advice.

[piglette]

If codeine is not helping I would say it is pretty likely it is PMR causing the problem. Increasing the dose is sensible so you can hit the PMR on the head before it gets out of hand.

[Hazeleyes48 in reply to piglette]

Thanks , hopefully the 12mg will ease the symptoms.

[piglette in reply to Hazeleyes48]

I suppose I would probably upped the dose by 5mg but hopefully you should win against the PMR.

[Nextoneplease]

Hi, I have a similar problem on dropping from 6mg to 5.5. I’ve gone back up to 6 for a couple of weeks with little benefit and am thinking I need to increase further, maybe to 10mg for a week? In my case it’s complicated by the fact that I have severe OA in my shoulder. I am also diagnosed with both GCA and PMR.

So yes, I’d say the stand in is probably right - increase your dose until you can speak to your rheumatologist. It’s annoying I know, having managed to reduce and then going up again…😔x

[Hazeleyes48 in reply to Nextoneplease]

I am sorry to hear about your OA in your shoulder. It’s annoying increasing again especially because I have Barrett’s Oesophagus which has got worse since being on Pred but I will do anything to get a good nights sleep again, I hope you feel better soon .

[Nextoneplease in reply to Hazeleyes48]

Thank you Hazeleyes 😊

The shoulder OA is very painful but the difference this time is that it’s not responding at all to codeine, and only very slightly to ibuprofen gel. It’s getting me down to be honest.

Good luck, hope you feel better soon too x

[DorsetLady PMRGCAuk volunteer]

You are certainly at the dose when PMR symptoms/pains may well come into play…and you have been given good advice by stand-in…

[Hazeleyes48 in reply to DorsetLady]

Thanks Dorset lady I am just relieved that I don’t have to increase to 50 mg again.

[DorsetLady PMRGCAuk volunteer in reply to Hazeleyes48]

No - can understand that -but having seen your comments to PMRpro re headaches do please keep abreast of them…that’s a more worrying symptom.

[PMRpro Ambassador]

I'd say it is most likely to be your GCA having a PMR component and you have gone slightly too low to manage it. I think PMR alongside GCA isn't quite the same as PMR on its own - it is still GCA causing the problem. The stand-in is on the right track.

[Hazeleyes48 in reply to PMRpro]

Thanks PMRpro it’s sometimes hard to get my head around the symptoms. I have been getting headaches too but thankfully no blurred vision or jaw pain this time.

[PMRpro Ambassador in reply to Hazeleyes48]

In my book - headaches are enough!!!!

[Viveka]

As it is in both shoulders sounds like PMR. Sounds like it's been there since the start, coexisting with GCA. I found my PMR on 3mg after 20 months on pred for GCA. You've got good advice. I'd imagine a slower taper once it is under control will hopefully keep both at bay.