I’ve finally decided it’s back.

[Greensleeves]

Hi all , I’m all over the place at present both physically and mentally.

I haven’t been “right” since having Covid pre vaccine and having to increase the dose from 3mg to 10mg , which wasn’t enough and put me in hospital.

Early this year the GP advised me to stay at 7.5mg for 2 months and drop 1mg per month.

I knew this wasn’t feasible, but I was steady at 7.5mg until relentless stress from April followed by a bad reaction from the 5th Moderna vaccine. I’d now say with certainty this isn’t a case of my adrenals not working, which they obviously aren’t, but a return of PMR.

I’ve slowly increased and even at 10mg for 2 days it’s not touching the “ throbbing pain “ in my arms , shoulders and hips or the debilitating fatigue.

Would you advise I keep increasing until I find the sweet spot , or blast it with 15mg and try and slowly taper down.

The stress isn’t going away, I can limit outside stresses , by just existing but that’s fine as long as I can do what I have to . Why do we feel guilty for feeling ill? It makes me feel selfish for complaining, probably some of it is from having unwell family and seeing their suffering. What dose do you suggest my friends. xx

[PMRpro Ambassador]

If it were me I'd go to 15mg - have you spoken to any of your doctors? Creeping up rarely works as you are always playing catch up and there is a difference between a flare due to overshooting the dose you really need and a proper relapse of disease activity which can also happen - and then you are back at the start not knowing what you need.

Until quite recently even some really good PMR doctors seemed to not understand that you can have that sort of relapse even while on pred - not sure why it didn't occur to them that if the dose is too low then symptoms can return. And it does happen - quite a lot I think. Especially in the longer lasting version of PMR which seem to wax and wane over time. Sometimes it feels as if they wax but rarely wane

[Greensleeves in reply to PMRpro]

I’ll do that PMRpro , go to 15mg . I take them at night so will start then .

I’ve made an appointment with the GP , have to wait 2 weeks, even that is so much effort plus they’re not wearing masks .

I went with my daughter a couple of weeks ago and was frankly shocked when she said “take your masks off guys “, needless to say we kept them on .

Diet , no stress and sleep, so easy to say , but not so easy to put into practice mid family issues when you’re the one who keeps the wheel turning.

I agree relapses happen while taking Prednisilone , particularly as I was taking 7.5 mg , the “dodgy “ one for some of us .

Probably from stress , the adrenal glands not having any back up or reserves .

Also those of us who started the symptoms at a younger age than was initially believed.

Thank you for your advice, greatly appreciated.

Hope you’re okay and managing xx

[PMRpro Ambassador in reply to Greensleeves]

Take your mask off? I think not in the average UK GP practice! I think we don't need them at the GP but there is only one of her and no staff. Can't get in the hospital or on a train/bus without an FFP2 mask. I was sitting outside the pizzeria/cafe/bar with an aperol spritz this morning and a chap came across from the station - had forgotten his mask and was refused entry! Someone gave him one though there is a shop on the square too.

[Greensleeves in reply to PMRpro]

The receptionists were wearing masks but not this particular doctor, a lovely young Iraqi woman, but very laid back. It’s not surprising many of the GP’s are off with Covid after the village fete and the school proms etc .

We’re treated like fools for wearing masks by many . One man actually told me to hide under the bed because I was wearing a mask it’s time they were made mandatory on public transport and trains .

I’d love to sit outside a cafe with an a aperol spritz , sounds idyllic in comparison to here at present.

How very kind people are to provide a mask for that chap .

We’ve run out of LFT’s in the local shops , although I get them sent out by the NHS .

They’re very reasonable in Aldi but many people are Covid weary and not interested.

We can feel Covid weary too , but can’t take risks for vulnerable family and ourselves.

I haven’t had antibiotics for 3 months now for UTI’s but will take D’MANNOSE before the twinge takes hold .

Take care I hope the 15mg helps and you stay safe and well. xx

[SnazzyD]

The advice is usually the blast strategy rather than the creep being more effective. I do think you need to speak to your doctor though.

[Greensleeves in reply to SnazzyD]

Thank you Snazzy I’ll blast it tonight with 15mg . I’ve got a face to face appointment in a fortnight. My bloods have never shown raised inflammation markers but I’ve had every test possible and PMR confirmed 3 times .

The stress and lack of sleep has been all consuming plus I was floored by the Moderna . Thank you for your advice it’s greatly appreciated. Take care xx

[tangocharlie]

I usually have to increase by at least 5, sometimes more, to mop up the inflammation that has built up by the time I realise I'm in a full blown flare. Then after about 4 or 5 days at the higher dose I can usually drop back down to a dose just above where I flared, stay there another few days and go down again cautiously. For me it rarely works say just going back up 1mg as by then it's too late. My rheumatologist allows me to do what is necessary after all these years so I have prior permission to change my dose as requied and I always inform her what I've done. I try if I can to get a CRP blood test when I'm feeling my worst, and then another later to show things are back under control. Not everybody's bloods are a reliable marker like mine though and you say yours aren't so probably not helpful for you to do that. CRP is far more reliable than ESR for me. Not advising you what to do , just saying what works for me.

[Greensleeves in reply to tangocharlie]

Hi TC ,

My bloods aren’t reliable, the highest my CRP reached was 12 .

I do need blood tests doing to check kidney function as well as inflammatory markers etc . They’re long overdue, unfortunately they’re sending people to the hospital which is a Covid hotspot.

I’ll book an appointment to go once I’ve got this pain under control.

You forget how awful it all is until it’s back. I’ve been feeling wretched but trying to carry on .

Knowledge is power but there’s an element of ignorance being bliss too .

There’s so much stress , but the advice of putting your own oxygen mask on first in order to help others is true .

I honestly wouldn’t know where to drop back to if the 15mg mops the inflammation up .

Seems like a lifetime ago when I was happily taking 5mg as a maintenance dose .

I would love to join your zoom when you’re ready.

Don’t stress though it’s our biggest enemy.

I still worry about what damage Covid has done or did . If you’re a worrier or empath it’s difficult to change.

I’m more emotional and anxious than logical and practical.

Thank you for your advice and take care . xx

[Grammy80]

You've gotten great input...I just wanted to wish you well. Take comfort that you are the one in the right by wearing your mask. It is the same in the states...hardly anyone wears them...I always do. Please take good care! Go...sit and have a spritz...stick your straw under your mask.xx💕

[Greensleeves in reply to Grammy80]

Thank you so much Grammy , lovely words of comfort and encouragement. I couldn’t imagine not wearing a mask to keep everyone as safe as possible.

You’re brave wearing your mask too when everyone stares .

I will enjoy a Spritz very soon with a straw under the mask .

Hope you have one too .

Take good care 💕 xx

[Hidden in reply to Grammy80]

I’m the odd man out too wearing a mask. Few in my state ( Texas) are. In the last month four of my family members, in different cities ( all fully vaccinated and boosted) got Covid. The new variants are so contagious. All received antivirals and had/ have light cases.

[Greensleeves in reply to Hidden]

Sorry your family members caught it, glad they’re okay and received antivirals . Important we bravely continue to wear our masks . It is a case of being brave in this town. Take care xx

[Grammy80 in reply to Hidden]

Smart girl, I too know several fully vaccinated folks who have it. Fortunately, none of them are seriously ill. However, one person wound up with an issue with their heart and maybe folks need to remember you can have long term effects even if you aren't deathly ill. Texas! I have a Newfoundland friend, 88. who has settled their because she has family....she finds 'the wild west' really challenging. My guess is you might too. Be well💞💞

[Greensleeves in reply to Grammy80]

I’m watching 1883 on tv Grammy, it’s an offshoot from Yellowstone and the Wild West . Fascinated by US history now and want to learn more . I had a toy ranch when I was a little girl with soldiers in blue or grey . I remember my grandfather talking to me about it but it’s all forgotten now so I’ll get some books to read .

You’re right this Covid can cause lots of issues, not good for those of us who are immune compromised.

It was the hospital receptionist who asked me to wear one of their masks and not my more protective one .

You have been through a lot with this PMR and GCA . Take care and stay well 💕💕 xx

[Grammy80 in reply to Greensleeves]

US history is often romanticized but I agree, very interesting. I've always found history of the UK and the various royals fascinating and probably my favorite nonfiction reads or listens. Those little soldiers in blue and grey were fighting the Civil War, not a proud time. If you can watch historical pieces by Ken Burns, they are objective. I have the folks of the Forum for teaching me, supporting me and just holding my hand the last three years. xo💞💞

[Greensleeves in reply to Grammy80]

I’ll try and find pieces by Ken Burns Grammy, thank you. The Civil war was a dreadful war by all accounts .

The U.K. history is interesting, when visiting old castles and manor houses it’s quite unbelievable how small people were in stature . Life was hard , we seem to be going backwards now .

The people on this forum are wonderful, bringing their life experiences , much needed advice and comfort whilst going through their own difficulties and advising to seek medical advice where necessary.

They’ve saved many or advised their diagnosis could be wrong.

Glad they’re holding your hand on this journey.

They’ve helped me tremendously over the years.

I owe a huge debt of gratitude.

Take care 💕💕xx

[Grammy80]

🥂'clink'

[Greensleeves in reply to Grammy80]

🥂cheers Grammy 💕

[Iloveholidays]

I work in the community for the NHS we stopped using PPE a few weeks ago but now back wearing only masks and we ask patients to wear them in our clinics. We also have to wear them moving around in the office but can remove when sat at a desk. Seems crazy GP’s are not doing the same. My local pharmacy are still requiring customers to wear masks. I’ve never stopped wearing one on the supermarket but I do feel the odd one out.

[PMRpro Ambassador in reply to Iloveholidays]

Quite a lot of locals are wearing masks and although I think some shops don't require them, the staff are still using them. If staff are using them I think customers should too. If a surgeon can wear one in theatre for hours - we can wear them to nip into the supermarket!

[Iloveholidays in reply to PMRpro]

Totally agree.

[Greensleeves in reply to PMRpro]

Exactly, some people are too blasé and they’re not taking it seriously. Surgeons have to wear them for hours .

[Greensleeves in reply to Iloveholidays]

I think it is crazy, they’re not wearing them in the pharmacy either and don’t request that customers wear one. You do find yourself being the odd one out and feeling self conscious.

The last time I went to the hospital they asked me to remove my FFP3 mask and wear a standard blue one . I refused and put theirs over my own.

This was April while visiting a vulnerable close family member in AMU , he subsequently caught Covid in hospital , thankfully asymptomatic, but still stuck in the red bed care home for the elderly when he’s in his 40’s.

Take care and stay safe .

[PMRpro Ambassador in reply to Greensleeves]

Maybe didn't know what an FFP3 was - was it just a security guard| We have signs saying we must have an FFP2 to get into the hospital but if they hand any out they are surgical masks now.

[Greensleeves in reply to PMRpro]

I probably looked like a Star Wars extra PMRpro , but usually wear an FFP2 . Hopefully they’ll tighten up again in the Autumn. 15mg is kicking in now , feels quite wonderful. Take care xx