Covid jab & flare.

[tina-shelley]

Hello everyone,

I always hoped that I'd never have need to write a post again other than my Seasonal Best Wishes post but alas it was not meant to be.

I was diagnosed with PMR in December 2013 after suffering the symptoms since the September of that year. I experienced 2 flares whilst reducing my preds until I adopted the dead slow & almost stop method & finally I was declared in remission in January 2018.

All seemed well until exactly a week following my 2nd Covid jab (Astra Zeneca) when I woke experiencing PMR pains in my shoulders and upper arms. Over the course of a month the pains worsened in this area & they also developed in the back of both knees. Coincidently I developed severe Carpal Tunnel in both hands. To date the only 2 areas effected are my shoulders / upper arms & rear of knees.

The pain became unbearable so visited the GP and was diagnosed with Carpal tunnel and bloods were taken....the result all well including no raised inflammation levels but very low Vitamin B12. I've been given a 3 month course of 150 micrograms of Vitamin B12 daily and agreed to hold back on any pain management as low Vitamin B12 can cause joint pain & we (GP & me) were hoping that once the B12 levels increased the pain would subside.

Alas it didn't so I self medicated 5mgs of preds daily for 2 weeks. This dosage worked OK and although I wasn't completely pain free I was fine in the daytime but by the following morning the pain had returned. After the 2 week self medication trail the pain returned, I managed to get a GP phone appointment. By this time the Carpal Tunnel symptoms were the worst to the point that my fingers and hands were numb almost all the time & my hands were in such pain I couldn't sleep or function properly.

I requested & the GP has agreed to prescribe me 5mgs of preds for a month then for me to 'dead slow and almost stop' reduce them. He's not convinced that it's my PMR that's returned and wants to refer me urgently to a Rheumatologist but is concerned that now I'm using Preds any accurate diagnosis of whatever it may be will be marred by the Preds.

Does anyone have any ideas or suggestions? Thank you all so much, regards, Tina.

[PMRpro Ambassador]

So sorry to hear that - but welcome back nevertheless. You love us really

Why is the GP thinking zebras? It is a common enough event and if 5mg did the job, what's he complaining about. If you can get lower than that it will be such a low dose that there should be no problems. Prof Dasgupta told us last year that he often keeps patients at 2-3mg long term as it reduces the risk of relapses.

[tina-shelley in reply to PMRpro]

Hi PMR Pro, thank you for your reply. I think that he is happy for me to be on the Preds but is worried that all further blood tests will be tainted because of the Preds & therefore may be masking another inflammatory condition. Also first time round I never woke up in pain, the preds seemed to cover me from 1 dose to the next but 5mgs is only working for approx 22 hours. Is this normal or should I up the dose? Tina.

[PMRpro Ambassador in reply to tina-shelley]

Difficult to say - if 5mg is doing a good job otherwise it might work to split it 4+1 or 3+2 to see if it takes you the full 24 hours. What time are you taking it?All I can say is that everyone I know who has had PMR twice says the episodes were totally different!

[tina-shelley in reply to PMRpro]

Yes PMR pro I've read that too. Thank you for your reply. I take it at 7.30am-8am. Splittinmg it might be the way to go. My Gp wanted me to start on 13.5mgs and I said no.....I'm wondering if perhaps he was right!

[PMRpro Ambassador in reply to tina-shelley]

Might be worth trying a few days at 10mg and then drop straight to 5mg - I fully get you wanting to use 5mg and I would probably try it first. It is working so maybe if you are patient it'll be fine.

[tina-shelley in reply to PMRpro]

Thank you so much I think I will do that.

[HeronNS]

Do let us know how you get on. It's discouraging when we seem to be on the mend and then something throws us off course. And trying to determine what is PMR and what isn't and should be treated another way seems to be a puzzle for many. Good luck!

[Pixix]

I have carpal tunnel, due to PmR. As soon as I got the numbness I talked to my GP & I wear hand splints each night. It’s stopped the numbness completely for now, & the hospital issued me with even better splints still, & I may avoid surgery. Not sure if it works if your carpal tunnel was advanced before medical help came your way, but thought I’d tell you my story...it did take two months for the numbness to stop! Good luck. My husband had his operated on about 30 years ago, it was a very minor op under local anaesthetic & he was back to normal very quickly.

[tina-shelley in reply to Pixix]

Hello Pixix, so sorry to hear you suffered from Carpal tunnel, it's very pianful! I too wear the splints nightly and since I started taking steroids again the symptoms have reduced considerably. I'm not saying that I have no symptoms at all but I can live with the mild uncomfortableness I now currently have. Coincidentally i do have permanent mild numbness to the tip of my ring finger on my Right hand and following g my GP telephone conversation today, the PMR and Carpal tunnel symptoms are being noted and monitored. Good luck to you, regards, Tina.

[Pixix in reply to tina-shelley]

Thanks, I had a lot of trouble at 3mg, but carpal tunnel better on 5mg & better if I wear them every night (didn’t bother for 3 nights at one point, then found it makes a difference)! Good luck!

[cranberryt]

I also flared exactly one week post jab. I had to go from 3.5mg to 9 mg for 8 weeks. I actually increased by 1mg a day until I was pain free. That was at 9mg. I stayed there for about a week and then began a very slow reduction of half mg every other day etc. Took a full 8 weeks to get back to 3.5. For what it’s worth, my pain also returned in my neck and shoulders and knees. I didn’t have carpal tunnel issues though.

[tina-shelley in reply to cranberryt]

Hello Cranberryt. I do hope you are feeling much better. I reported this return of PMR to the MRCA today...form a bit tricky to complete but I do think it's important that anyone who was either in remission or who suffered a flare following their Covid jab to report it. Coincidently there is one section where it asks if you're taking steroids. You never know this might be more common than was first thought. Regards, Tina

[cranberryt in reply to tina-shelley]

Thanks for the suggestion. Is that a UK thing? I am US.