Advice please re flare, following Covid infection.

[Predsharer]

I had been tapering successfully and was down to 2.5mg when I tested positive for Covid (3rd October). I have had a bit of a bumpy ride up and down at lower doses, but was feeling OK prior to being quite poorly with Covid. I was taken to hospital with chest pain and breathing difficulties on day 2, but after blood tests and X-ray was allowed home. I didn’t think of adopting ‘sick day rules’ and wasn’t’ advised to by the doctor in A&E, who I told I was taking Prednisolone (and the dose). I am now feeling very poorly with a full on flare. There really is no point in going to either my GP or Rheumatologist for advice as both have left it to me to manage my PMR and appear to know little about the condition. Everything I know about it was gained from here and I am most grateful. Does anyone have some words of wisdom for me. Thank you.

[DorsetLady PMRGCAuk volunteer]

hi,

This post/link contains information of how to deal with a flare, just adjust the example to your own dose -

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

Up the dose and deal with the flare ...

I'm not surprised the A&E doctor said nothing - despite the introduction of the new steroid card BECAUSE healthcare professionals were unaware of the risks for long term steroid patient, very little seems to have changed, No doubt because they didn't accompany it with a major education programme....

[Predsharer in reply to PMRpro]

Thank you PMRpro and DorsetLady for your prompt reply. I am in no way doubting your wisdom and realise that I may have no other option but to follow the advice you give here. However I have, from the outset, experienced a very difficult side effect of Prednisolone. It instantly almost doubled my resting heart rate, causing me to hardly sleep at all in the early days. My dose was decreased to 12.5 immediately in the beginning, which thankfully still controlled my PMR symptoms and still I only slept for about two hours’ one hour at a time! It has only been in the past few months on a low dose of pred that my resting heart rate has gone slightly below 80 (it used to be 60) and I have been sleeping and resting better.. I hated the constant feeling of anxiety and lack of sleep and feel that I would return to this if I increase as the advice given in DorsetLady’s reply. Do you think that a small increase in Pred and a whole lot of rest may have the desired effect, or do you think I have overshot the situation and need to adopt the rules of a flare to the letter to get rid of the inflammation build up? Thank you again for your valuable advice.

[PMRpro Ambassador in reply to Predsharer]

The extra to get the flare under control is only for a few days - it is doctors who often think you have to start at the beginning again, you rarely have to go that far. It is entirely your decision - but if the disease activity has increased and you don't go to the dose that manages the inflammation you risk being back at the start again as the inflammation builds up.

[DorsetLady PMRGCAuk volunteer in reply to Predsharer]

You may find increasing by half the usual 5mg recommendation may do it, but no one can categorically say it will.

I appreciate why you don’t want to increase too much, but it’s a bit of a Catch 22 situation. Up the Pred and you risk increased heart beat, do nothing or increase only a little and risk inflammation going up again. I’m that scenario you may find someone else making the decision for you.

Perhaps you should (if you can) discuss with doctor.

[Predsharer]

Thank you, I think the disease activity has definitely increased since Covid, but is nowhere near where it was in the beginning. I could get in and out of bath this morning unaided! I couldn’t even get out of bed unaided when I was first diagnosed. I needed just 12.5mg and I literally could have run a marathon instantly. I was super hyper until I got under 8mg, which was really unpleasant. I have heard from one or two people that have experienced this side effect, but I don’t think it is common. I have never had any advice from medical professionals, except for them to want to give me more and more different drugs. I so appreciate your advice and patience, because, whilst I don’t always share the same experiences as others on here, you are always a listening ear and a reliable voice. Like so many people who seek advice on here, I don’t listen to my body enough and ended up with PMR following the first vaccination and a very stressful life period in my life. I know you can’t advise me, but I know that taking the amount of Pred advised in the DorsetLady’s post will prevent me sleeping and make me anxious and agitated. It is such a dilemma 🙁

[Pamela60]

I've just gone through the same thing.

Sixth jab then whoosh a flare up, I was down to 6mg pred. I spoke to my np at rheumatology who advised up 0.5mg to see if it helped, which it has.

Nearly seven years fighting pmr, three strokes later , but ' I look well ' as I'm so often told. It's difficult to try and explain I may look well but sometimes I feel dreadful.

[PMRpro Ambassador in reply to Pamela60]

"It isn't my face that's ill" - and if you are feeling really fed up "YOU don't look stupid ..."

[Predsharer in reply to Pamela60]

Thank you Pamela60. You are so right about looking OK and no one understanding actually how Ill we are, which is why it is such an isolating illness. The problem is that people thinking we look OK increases their expectations of us. We have to resist these expectations and reduce what we do and learn to say ‘no’. I’m convinced it is ultimately what will help us to heal.

On the subject of vaccinations, I am no longer convinced that we should keep having more and more. I have had four and the decision whether to have another was taken out of my hands when I got covid. Even though I had Covid quite badly, so did my daughter (who I caught it from) and she doesn’t have PMR and is young and has three vaccinations. A friend of mine had it quite badly three weeks after her booster. The evidence for more and more in order to minimise the illness seems sketchy. I’m not an anti vaccine person though, but think more research needs to be done. I would like to spend some time in ‘hibernation’ this winter just giving my body the best chance to heal by sitting by my fire and doing very little😊

[Umufu in reply to Predsharer]

Hi Predsharer. Well said. I have been diagnosed with PMR 4.5 yrs and with GCA. 3.5 years ago.

Started with 60mg Pred and now down to 5.5 mg.

Never had ANY vaccine (Flu, Covid, Shingles, Pneumonia and whatever else is available)

and TOUCH WOOD never had any illnesses associated with these vaccines.

Just saying....

[EdithWales]

I am so sorry. I collapsed in January and my husband called an ambulance where Ispent the next 9 hours. Fortunately I remembered the sick day rules and doubled my prednisolone to 10mgs, I felt much better within a very short time and when I was eventually found a bed in the Covid Assessment Unit I persuaded the Consultant to let me go home, there were some very sick people there.

I recovered very quickly and I think I saved myself. As advised by the others on the site, increase your dose and get this flare under control.

Take care

Edith Wales

[Predsharer in reply to EdithWales]

Thank you for this advice Edith. Good to hear from someone who used the ‘sick day rules’ in this context. Can you tell me how many days did you double your dose for?

[PastelsinArt in reply to Predsharer]

on SD rules you take the increased dose for as long as you are unwell then (provided it's not a long illness) can go straight back to your original dose. To get a flare under control it's a week to 10 days then go back to just above the original dose before resuming a slow taper to find the optimum dose for you. Hope this helps.

[EdithWales in reply to Predsharer]

DL and PastelsinArt have answered this. I doubled the dose for several days then started tapering because I was fine. You can taper quickly if it’s a short time. Listen to your body, it will tell you if you aren’t having enough

Take care

[Ridge]

Your dilemma is my dilemma. Please keep us posted as to how you are doing and what you do. Prednisolone seems to have a direct effect on the electrical wiring of my heart. I recently went to 10mg from 2mg on advice from Rheumatologist. He advised for a week. The flare responded immediately, bliss but was replaced by dreadful anxiety and sleeplessness and arrhythmia. The anxiety did lessen after 4 days. On day 6 I dropped to 5mg instead of 2mg recommended but then realised it should be 6mg where I am now. Then I had a prolonged session of Afib and arrhythmia. Saw nice GP who put me on blood thinners and gave me beta blocker to take if necessary. I feel that for me I have to be careful about jumping up and down doses. Next time I think I will go to 10mg for say 3days then reduce from then on as fast as I can.

Good luck and keep us posted.