Flare after covid

[Nanatoo]

I’ve had a fairly mild dose of covid, and lots of stress with a leaking roof, which has caused a flare. I’ve been on prednisolone since early July after waiting six months for a diagnosis. I started on 20mg and had reduced to 12.5 without much pain but that has returned. I’ve taken 15mg for two days and the pain has eased significantly,also the anxiety I’d been experiencing has reduced. How long should I stay on 15mg and how should I then reduce? Maybe I’d been going too fast anyway as it didn’t take long for the pains to return

[PMRpro Ambassador]

I'd have said 20/17.5/15 with a month at each because we know from experience that works better - especially when diagnosis and pred was delayed.

So I'd also agree you were a bit ahead of yourself. Me - I'd stick at 15 until I felt pretty decent and only then try a slow taper.

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro... you need to slow down a bit - and stay at 15mg for at least 2 weeks, but 4 probably would be better - and then 1mg at a time until you get to 10mg... after that you may need even slower - but that's a little way ahead.

[Nanatoo in reply to DorsetLady]

We all feel pressured by our GP’s to reduce quickly but I now have personal evidence to show this doesn’t work,for me anyway. Thank you

[DorsetLady PMRGCAuk volunteer in reply to Nanatoo]

I know it’s difficult to question doctors at times, and a GP is probably just following the guidelines-which do work for many, but not all ] - but now you have proof it doesn’t work for you, hopefully they realise one size doesn’t fit all!

[Freya32 in reply to DorsetLady]

Dear Nanatoo. I wrote you a lovely reply...took me an hour and it lost before sendingWhy.

How can you get those things back?xx

[PMRpro Ambassador in reply to Freya32]

You can't. You may have accidently left the page before clicking reply or it may have been a HU moment, it has them,

If you are writing a long reply, try doing it in Word or whatever processing package you use and then copy and paste it. On a computer I sometimes block and copy at intervals while writing but usually forget. It happens to us all.

[Freya32 in reply to PMRpro]

I can,t do word on this little tablet.I will try again after my tea, (a little pasta, some roasted veg and tomato sauce and grated cheese.....

Stewed apple with yoghurt.

And chocolate.

HappyEating everybody.

Enjoy your meal

X

[DorsetLady PMRGCAuk volunteer in reply to Freya32]

Can you draft it in Notes ..and then copy & paste?

[PMRpro Ambassador in reply to Freya32]

Is there any processing option on it? Never had a tablet. Have been given a Fire now but not sure how to use it! The intro from the daughter was a tad sketchy!

[DorsetLady PMRGCAuk volunteer in reply to Freya32]

As PMRpro has said -you can’t -and it’s very frustrating …

[Hirwaen]

You need to go at a much slower pace, no more than 1 mg a month and then only if you feel you can cope. This is a marathon, not a race and I know from bitter experience that the slower you go the better. I have been on this ‘ journey’ for6years and have at last reached 2 mgs. Please try to be patient.

[Freya32]

Dear Nanatoo.This is the gist of what I wrote and lost.

Only the original was .....humerous

Will attempt brevity....not my strong point.

Listen very carefully.

Doctors are not all of the same ilk.

Some are ticking away the five minutes allowed per customer...yes we are customers.

Others have greater hearts, good ears and patience.

You have pmr when you are crippled by these pains, remember each of us is unique...we all have set point levels.

Pain in shoulders, back, bottom, across neck.

Swollen useless hands, sudden weight gain, misery because your limbs and muscles won't do what you want. You cannot turn in bed orget up out ofbed.

You cannot stand orwalkk orbend. Your jaw feels odd. You cannot chew. You have an awful pain in the side of your head.

You are taken to the doctor....he may or may not recognise what you have...he or she gives you streoids

And Magic happens....

Things ease up.

You have PMR.

The corticosteroids work wonders.

But they begin to have their drawbacks.

You start on 20 mg per day perhaps...I was started on 15.

Once you are improving the medical wants you to decrease.....but you must do it according to your body and your gut.

Go too quickly and you undo the good.

Decrease by 1mg in two weeks...see how that feels...ok try again in two weeks or more. If not good then go back a one.

The body knows best.

As for expert help....you get none. You don't see a rheumatologist unless you are one of the favoured few...or you go privately.

I have had severe, sometimes crippling arthritis over2o yyrs.....never got to see a rheumy once....can.t afford to pay now.

MyGp , a very nice but busyman, after thefirst two phone calls....neverbothered anymore. He cut my preds down to ten without telling me.

Sometimes I ran short. This caused problems.

My fingers were useless and dropped preds lost in the dustballs under the bed.

I got down to 9mg a day.

Now on 60 mg.....to save my sight etc.

Face was losing its huge essence...now the reverse.

Something happened to me....after a week in bed...I felt very unwell called 111 just for advice.

Two nights. Hosp....

Interesting...how diagnoses was made...if any.

All very kind....

Heart attack, another little stroke.no seems not..

But discargedon 60 mg per day pred, calcium tabs, which shouldhavebeen

Advised initially.....mighthave saved my teeth.?

Chap 2 ...coming shortly....or I will make a mistake....

Only saying all this to show the differences....

[Nanatoo in reply to Freya32]

Thank you Freya32 for that lovely interesting post and as you say we’re all different.

[Freya32]

Nana tooWell lost chap 2 also.

Had some toast and honey a d cup of hot choc. Feel my

New energy

The pasta, gluten free was lovely sith the tomato and roast veg sauce....

Veg and lentil stew last twodays...so pasta made a change...haven't hadpasta this year at all....no carbs...given that up.

Then had banana fried in sesame oil with black sesame seeds...looked for the honey...always on counter no honey.

(Took ages to find.. beside the pickledgherkins). So had syrup from ginger jar instead and yoghurt.

Very nice.

Now for happiness 2.

First diet....very I mportent.....except at my age , onthefast track to 86.

Plenty of deep sea fish, cod. Haddock etc. Wild. Atlantic salmon...dream on.

Plenty lemons, in water, s.iced an dcooked, wash well.

L.emons are magic.....like preds.

Dark berries, raspberries. Frozen in smoothies if not fres..c ranberries.

Green leafy veg. Tomatoes, sweet potato chips.apples, pears and melon, apricots.

Butter, oliveoil, only organic meat, grass fed.

Too dear formost. I love venison personally and rabbit.....no rabbit for years.

Organic chicken, use bones for soup basis.bone broth,

I really fancy an Arbroath smokey

Prunes, dates, walnuts frugally.

No processed food,,,,ditto meats....

No white bread. Cut carbs....no burghers. Pie or chips etc.

Vits d 3 with k2, c and b vits. Omega 3,s from the fish....I have sardines....cheap.

Don't forget the darker choc the better.

To cont.

I am now on 60 preds....to save sight.

How come preds can both cause cataracts I pmr and save them....sounds nuts...

Had an incident or two

Did I tell you , say yes if so and won't repeat myself.

Feel very happy....nolonger downhearted.

I talk to the wall all night wheen s.eep evades.

But get four whole hours of deep sleep... now that lovely lady gp took my pulse one day and found d the reason for the heart waking me up and the difficulty with breathing.

Sent

me on fast track to the oncologist too....lovely kind , gentleman ....all well its just the pmr causing all the pain there...muscles etc.

See there is always an explanation.

Sometimes there are other things going on alongside....sorry to bore you....probably said all this before.....tendency to repetition

So go with the flow of yourbody. It knows what you need listen to it....actuallymine says what about anice long cool g and t....but the bottles remain unopened.....i stand firm on alchohol.

Only reduce preds to where you feel no pain...

Why take preds and have pain.....remember slowly, slowly catchee monkey"

I have had all my ssupport and help from so many kind folk on here.

Bless them all and thankyou.,

If you are lucky in your Gp feel blessed they are all under strain now with funds spent on rubbish...nuff said.

Got to go.

More rubbish to sort and shift....then bed and back being Shirley Valentine..and talking to the wall.

Oh I talk to God too. HE HASHEARD IT ALL BEFORE

Did I tell you how two days after I left hosp I lost my counting ability and most of my balance....I asked God how many I.s and five mg of ppreds made 60...but if he knew he he wasn't telling. So I just shoved a few down in each time and hoped for the best,,,

Think it's coming back....I put 3 or 4b5.s in each of three Compartments

One. For each meal....mostly. 3 meals a day,,,,sometimes just two...no aches today.

Peaceful nights.

God bless all those in conflict, pain and this awful sorrow in Israel.

Pmr is nothing by comparison.....

Oh and keep away from shingles.....nasty things shingles....think all my pmr was certainly connected with the nasty bout of shingles....all downhill very fast after that...grief too does strange things to the human mind and body.

Got the electric fir on so nice n warm.

My lemon trees are in flower....wonderful

One last thing. You folk with pots or gardens go gift yourself a rose...mum in a million...the. scent will dance in your ♥.

X

...

[Ruthy53]

I was under the advice of a consultant in rheumatology who made me step down very slowly. A week at a time. Ask advice from a medical practitioner. The rheumatology nurses were really helpful and gave advice too. How that helps