Shoulder pain.

[Headpain24]

Hi relatively new here diagnosed October 2023 with GCA. I've tapered off my steroids now completely and am on Roactemra. Recently blooda showed low neutrophils so now take Roactemra fortnightly. Recently have had a very painful shoulder GP thinks rotor cuff. Wondering is it related in anyway to GCA or side effect of mens. Anyone anything similar 😫

[DorsetLady PMRGCAuk volunteer]

Personally, I’d want RC verified.. rather than GP just thinking it’s that.

My reasoning, my GCA was originally ‘diagnosed’ and treated as a frozen shoulder for many months. It wasn’t.

Yours may be a RC issue, and that’s a nuisance in itself - I know - but please ask for more clarification just to make sure it’s not GCA related.

[Headpain24 in reply to DorsetLady]

Thank you

[PMRpro Ambassador]

I agree with DL - not good enough assuming it is a rotatorcuff problem as it could be due to PMR/GCA flaring.

Furthermore, RoActemra isn't a 100% answer to replacing pred - half of patients have another mechanism causing the inflammation. I too am on Actemra, also fortnightly (by choice, not been any neutrophil issues) but also 7mg pred which I can't get below. At 6mg I slowly develop bicep and forearm tendinitis which becomes so painful I can't use my hands. I'm totally stable and pain-free at 2 weekly Actemra and 7mg pred so the rheumy is perfectly happy and I am intending stretching the interval between injections further if I can.

[Headpain24 in reply to PMRpro]

Thank you so much. Will be going to see my rheumatology specialist shortly so will be armed with information

[Sharitone]

I did have a RC problem, but it was confirmed by ultrasound scan. The good news is that it did get slowly better.

[Headpain24 in reply to Sharitone]

Thank you for replying. Maybe it's a scan I need then to see if it's RC

[Hightower62]

Hi, not sure this is relevant to you but four years ago I had a vague diagnosis of ‘unspecified inflammatory disease’ as my inflammatory markers were extremely high and have only recently have been diagnosed with PMR/LVV.

My main symptom now is permanent shoulder stiffness & pain but worse in the morning on waking. It is however the same in both shoulders.

[Headpain24 in reply to Hightower62]

Thank you for reply. What exact inflammatory markers were high. My ESR was very high but since starring steroids then Roactemra it has reduced to 5.

[Hightower62 in reply to Headpain24]

Sorry, I should have mentioned that it was specifically CRP which was extremely high at 337 and only started to come down when put on 60mg Prednisolone. I tapered off over 28 months but remain on MTX which is keeping things at bay except for the stubborn shoulder pain/stiffness and the annoying constant fatigue. I don’t recall having my ESR checked but it may have been.

[Headpain24 in reply to Hightower62]

Ok now need to see what my CRP levels were and are now. Wondering does steroids/Roactemra reduce these markers therefore masking the real results for other conditions.

[Andrea2727]

I have had PMR for 18 months and GCA halfway through. Both my arm movements are restricted particularly my right arm/shoulder which is permanently painful with the obvious difficulties. I have had x rays and MRI and the shoulder surgeon at the Nuffield, Exeter tells me that the rotator cuff tendons have “had it”. Replacement shoulders are a step too far for an 82 year old. I am now on 10mg prednisolone and methotrexate. In terms of general health I feel good and dramatically better than 18 months ago. As far as the shoulder and restrictive movement is concerned it appears to be “no solution “ just get on with it. As a four times a week golfer, and now managing a two mile walk maximum, I feel almost useless but thankfully I am remaining positive. So sorry I cant offer help to others with a similar experience.