Sometimes You Just Have go Stamp Your Foot and say GRRRRRRRRRRRRRR

[Bcol]

Had my first day on Sunday when, for the first time in four years, I didn't have to get up for an 02:00 tablet, first day of taper from 0.5mg to 0.0mg. Was still up but that's neither here nor there. Celebrating that all was going well and felt a bit rough on Monday and followed that with a really grumpy/achy/very painful wrists and hands, bunged up nose etc on Monday night. Felt a bit better this morning after a couple of Paracetamols, but had an enlightened moment and did a Covid test. Instantly positive!!!! OH bringing some new ones home as ours are slightly out of date so will try again later. Grrrrrrrrrr.

[DorsetLady PMRGCAuk volunteer]

GRRR indeed… hope it’s not, but plenty of TLC if it is. Hope you soon feel better.

Maybe hold on the taper until you know - and are out the other side - if it is Covid.

[Bcol in reply to DorsetLady]

It's fingers crossed, but have to say I wasn't surprised about it being positive. Certainly not feeling poorly enough for SD rules and will stick on 0.5 until its gone.

[DorsetLady PMRGCAuk volunteer in reply to Bcol]

😊

[Bcol in reply to Bcol]

Now confirmed after new, in date, test.

[DorsetLady PMRGCAuk volunteer in reply to Bcol]

😟

[Sharitone]

Bad luck, but at least it wasn't a PMR flare!

[Bcol in reply to Sharitone]

Think I'd rather have a flare, I could sort that a lot more easily!!

[yogabonnie]

so sorry. but so great that you are holding well at .5! super. How did the taper go before this? How long on each dose from 2mg down? just curious!! Hope you have a mild case. It seems to be BAAAAAAAACK everywhere.

[Bcol in reply to yogabonnie]

From 10mg down, 5 week, 0.5mg DL Taper

[Flosy in reply to Bcol]

Sorry to hear that,get well soon.x

[Bachfugue in reply to Bcol]

So how long did it take to reduce from 10mg to 0.5mg? Did you religiously stick to five week tapers? Sounds amazing 🤩

[Bcol in reply to Bachfugue]

It's an approximate two year process at that rate, with an odd few weeks thrown in if the time to reduce didn't seem right.

[PMRpro Ambassador]

Oh GRRRRRRR indeed! There's a lot of it about according to both daughters who work front line NHS.

I think if the test is positive it suggests it is still working!! It is usually false negatives

[Bcol in reply to PMRpro]

The way I feel its definitely still working. 😢

[PMRpro Ambassador in reply to Bcol]

Get well soon - though it seems a persistent variety at present.

[Bcol in reply to PMRpro]

Thank you. It's got until next Monday when we go away with the littlies and then I'm sacking it!!

[PMRpro Ambassador in reply to Bcol]

Hope it is gone!

[Kendrew]

Oh heck! Exactly what you didn't need so close to your holiday with the GC's. Hopefully Hazel won't develop it too. Keeping my fingers crossed for a fast recovery.

Chin up.

[Bcol in reply to Kendrew]

Feeling decidedly fed up. Hopefully it's not around for too long.

[Kendrew in reply to Bcol]

I've emailed you.

[SheffieldJane]

I am just getting over Covid and it was truly horrible, worse than the last two times and in spite of 7 vaccines. Take care and have plenty of rest.

[Bcol in reply to SheffieldJane]

Hi SJ, I can agree with all of that, this has hit me far harder than last time.

[howtotaperdown]

Hope it goes quickly, Covid does seem everywhere, I want to pass on what I think is a tip to support immunity whilst on Pred, and otherwise... Moringa herb tea...I make a pot every morning and put what I dont drink in a small flask for the rest of the day, usually with fresh ginger I wouldn't call it delicious but it seems to have kept a lot at bay for me. Friends from different continents introduced me to it where it is considered very beneficial .... I often find it fresh in Paris, or when travelling, and otherwise easy to buy dried from of course amazon

[WilfDog]

Hope you recover for your hols. I've had supposedly chickenpox followed by covid and a UTI just before my hols, but fortunately I was all clear, albeit feeling out of sorts once we went.I have found that cold water, sea and rivers are brilliant for inflammation. I do have cold showers occasionally but as soon as I hit that cold water on holiday I felt so much better afterwards.

Have a fab hols and I hope you recover in time! X

[Bcol in reply to WilfDog]

Thank you,I have promised the littlies that they will be swimming without aids by the end of the holiday, so being ill is not an option!!!!

[WilfDog in reply to Bcol]

Indeed, it's not. Our mindset can often get us through. Enjoy your hols!! X

[Broseley]

Life's a pig isn't it. Hope you feel better soon. I wasn't offered a booster this year, were you? I got a pneumonia vaccination instead. But my friend, who's 60, got a covid booster for the first time. She doesn't have PMR but ulcerative colitis in remission - for 10 years!

[Bcol in reply to Broseley]

Life is wonderful, but it does like to try us!! Yup fully up to date with vaccinations, like SJ I've had at least seven, just got to see this one out and hope I'm sorted for Monday. Being seventh five means I get them automatically, regardless of my medical condition. I think the present rules do need looking at and refining so that they include everyone at more risk.

[Broseley in reply to Bcol]

If you had your booster, hopefully the symptoms won't be too bad 🤞

[Viv54]

OH OH , that was my husband and i two weeks ago ! Its doing the rounds again !

[Pixix]

don’t want to be negative, but I tested positive for 15 days…& naturally you don’t want to give Covid to your littlies! It’s not feeling sick that counts,min a way, it’s the ability to make others sick! People who don’t test, ir who continue normal lives, are the ones causing this huge surge of Covid that’s occurring right now! Fingers crossed you get negative in time….!

[Bcol in reply to Pixix]

Don't worry, I won't be going anywhere if I'm not well and testing negative.

[Pixix in reply to Bcol]

I didn’t think YOU would, just that others do right now! I just wanted to warn you, really, as I never dreamed I would test positive for 15 days!!! Hope all goes well, S x

[perceptual63 in reply to Pixix]

This was me as well as it took 15 days for me to test negative. I was holed up in my bedroom for 2 weeks and thankfully no one else in the household got Covid.

[Pixix in reply to perceptual63]

My husband was in hospital with pneumonia and an acute kidney injury and deep vein thrombosis. They discharged him home on day 4 of me being really sick and in bed. I had to do as they said and clean all the surfaces change the bedding and I then physically moved out to our motorhome which is parked on the driveway! It was truly appalling few weeks and I still can’t believe they discharged him when they knew I was so sick!! S x

[Thelmarina in reply to Pixix]

That just sounds terrible. Thank goodness it’s now a memory - albeit one you could do without! 👍

[Pixix in reply to Thelmarina]

It was very hard. First time I’d had Covid, as we shield each winter for my lung issues, & shielded longer than others after lockdown! First time my husband had pneumonia, too! Thanks, S x

[Bcol in reply to Pixix]

Sorry Pixix, first time back for a couple days. An awful experience for you, it must have been a nightmare and a memory you could have well done without. Hope all is OK now.

[Pixix in reply to Bcol]

Sadly, no. Because it appears they omitted to give my husband one of his prescribed pills, that is why he has deep vein thrombosis. At this time his ward was closed due to outbreak of C.Diff, so I couldn’t visit, so had no idea he had had Doppler test, after 2 days I managed to speak to a doctor, but she only told me about his pneumonia & that he’d suffered an Acute Kidney Injury. They then lied on the discharge papers, saying he had no DVT, but warning of the danger he may get one. His DVT was found on 6 June, & we both learned about it on 3 July (David’s third admission in 6 weeks). It also means that it’s too dangerous for him to have his gall bladder removed now, & each time he gets a flareup he will end up back in hospital. Internal investigations are ongoing. Other rules & protocols were also not followed!! Thanks for your kind words…tbh, the nightmare is ongoing!!