On top of everything else, Now I have covid19! - PMRGCAuk

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On top of everything else, Now I have covid19!

Linny3 profile image
48 Replies

What a misery this has been. All the places PMR strikes is three times worse with covid. I don't want to take anymore prednisone so am trying aleve and that is helping with pain. I have never had anything like this in my life. Now I have lost my sense of smell and taste. I bought a large bag of the cinnamon scented pine cones and when I emptied them in my bowl I noticed I couldn't smell them. I thought I had been cheated. Then I had a lovely pice of cheese streusel and found I couldn't taste it. Bummer.

It has been 6 days and I think I am out of any real danger. The coughing was awful and sometimes made me feel like I couldn't breath. Now I have a bad head cold. Cleveland Clinic had a list I had to check off and I checked off all12 items. I did have both vaccines, so that didn't help. Earliest I could get a test is on tuesday. Not sure if I will get tested or not. If I am feeling better what is the point. I stopped my methotrexate shots last week, figured I shouldn't lower my immune system any lower than it already is.

Take Care everyone and I pray you don't catch this awful virus.

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Linny3 profile image
Linny3
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48 Replies
PMRpro profile image
PMRproAmbassador

Get well soon!

But I think your assessment the two vaccines didn't help isn't right - if you hadn't had the shots, you wouldn't be up and writing on the forum, you would be likely to be a lot sicker. As I have written several times, having the shots never did guarantee 100% safety from getting Covid, especially if it is a variant you come across, but it does make it very much less likely that you will need to go to hospital.

Linny3 profile image
Linny3 in reply to PMRpro

Yes you are right. I guess it could be worse. Now I wonder if I need the booster. I don't think so. I should have enough antibodies to last me awhile

PMRpro profile image
PMRproAmbassador in reply to Linny3

Not sure what they recommend in the US, in Europe they say to wait at least a month after a Covid infection. However, it also seems that the immunity developed from an infection isn't as good as from the shot - you are immune to the variant you had, the shot covers more. Ask the doctors.

bresbo profile image
bresbo in reply to PMRpro

I'm not an expert, but I understand that the discussion over what confers the best immunity is still an open question. I recently read this paper from The Lancet:-

thelancet.com/journals/lani...

Of course, because it is an open question, there will be papers and individuals who maintain that the evidence is settled one way or the other. That's the way science works. Normally one can follow a debate as observer. But in this case, for better or worse, we are the laboratory.

PMRpro profile image
PMRproAmbassador in reply to bresbo

I'll stick my head out of the window and suggest that is probably now out of date. Infection with delta or even an earlier version was good protection again reinfection with delta. But with a variant you are on new ground - and omicron appears to fulfill that threat.

bresbo profile image
bresbo in reply to PMRpro

The Lancet paper was published in November. But yes with a new variant, new ground indeed. So at this point nobody knows. It's been mooted that the current generation of jabs won't work so well, but that those who gained immunity before the jab programs were rolled out are likely to fare well. We shall see when the data starts coming in. The good news is that in the UK at least 80% of 5-14 year olds have already had Covid, so they'll be safe whatever happens to us oldies.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Linny3

The booster was designed because your immunity from the 2 (or 3 if immune suppressed) primary vaccines waned over time. In UK it was initially recommended 6 months after last primary, now due to Omicron variant it’s been decreased to 3 months.

mgrogers99 profile image
mgrogers99 in reply to Linny3

Having the vaccines did help.....they keep you off a vent and keep you alive...pretty good deal!

Sweetpeasoprano profile image
Sweetpeasoprano in reply to Linny3

Have the booster as soon as you can. Both my husband and I are double vaccinated and had the booster. We both caught COVID about a week after the booster and although it needed another week to be fully effective, I’m convinced that that is the reason I have had virtually no symptoms and he only has a few sniffles and loss of sense of taste and smell.

Predderman2020 profile image
Predderman2020 in reply to PMRpro

That is right - according to people far more knowledgeable and qualified than me. There are 2 types of vaccines, 1) gives immunity (smallpox), 2) gives resistance to developing moderate-severe disease once exposed. Covid vaxxes are the 2nd. Great podcast from Oxford University epidemiologist Professor Sunetra Gupta,(Queen of Flu) re: the new variant. Just her voice lowers blood pressure! Also very optimistic! telegraph.co.uk/opinion/202...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Sorry to hear about Covid - but the fact that you had 2 vaccines undoubtedly made it a lot less miserable and dangerous than it could have been.

Hopefully you will soon be on the mend - but please have test even if you are feeling better.

Plenty of TLC needed. 🌸

piglette profile image
piglette

Poor old you. My sister has recently had Covid after two shots. She said she felt like she had a head cold with it and felt yuk. She started to feel better after a week or so, but was also dreadfully tired. If Advil is working for you it possibly is helping the Covid as it is normally pretty rubbish in helping Covid.

PMRpro profile image
PMRproAmbassador in reply to piglette

Rubbish at helping PMR you mean??????

piglette profile image
piglette in reply to PMRpro

Thanks, brain is obviously in a bad way!

PMRpro profile image
PMRproAmbassador in reply to piglette

Probably not as bad as mine!!!!! Snow (4 inches) and no sun on a Sunday isn't agreeing with me!

piglette profile image
piglette in reply to PMRpro

To top it all the drains have blocked in our village hall of which I am chairman plus the houses and shops each side are affected. I think it is under the road somewhere. The smell is disgusting! I have spent the last twenty four hours trying to get Thames Water to do something. They may turn up in three days, while people have no water, no working loos etc etc. Yoga and Zumba coming tomorrow morning will love us!

SheffieldJane profile image
SheffieldJane in reply to piglette

Total respect piglette!

PMRpro profile image
PMRproAmbassador in reply to piglette

The UK is falling to bits - and another storm on its way to the north before the effects of the previous one have been sorted ...

piglette profile image
piglette in reply to PMRpro

Thames Water actually turned up an hour ago having reported the problem on Saturday. The road is smelling revolting and people are panicking that there is Covid in the sewage! Suppliers seem to not care any more, very sad.

PMRpro profile image
PMRproAmbassador in reply to piglette

I'm sure there is Covid in the sewage - but I bet there are a lot worse things!!! There are various sewerage works over here using it to monitor the presence of Covid in a given area - seems to work quite well. Of course they don't care - costs to sort things out and affects the bonus they can pay the shareholders ...

piglette profile image
piglette in reply to PMRpro

In fact Italy were supposed to have found Covid in the sewerage works in 2019 before it was known in Europe apparently.

Nextoneplease profile image
Nextoneplease

Hope you feel better soon Linny3 - and glad you haven’t been too unwell so far x

MrsNails profile image
MrsNails

Get Well Soon 💐

Sharitone profile image
Sharitone

All the best, Linny, and steer clear of Omicron!

PMRCanada profile image
PMRCanada

So sorry to hear you got Covid. I know how miserable it can be. I do consider myself fortunate to have avoided hospitalization.

Take good care of yourself and be sure to keep up the aleve, rest and hydration.

SheffieldJane profile image
SheffieldJane

Sorry that you have had the dreaded Covid, it sounds horrible but not as horrible as it would have been if you hadn’t been jabbed and you are coming out of the woods with more immunity and it hasn’t ruined Christmas. So that’s all good. I took a Covid test today. I feel horrible with a cough’ cold and stomach pains. It was clear/ negative but I am still dragging myself around.

York54 profile image
York54

Hope you are feeling better soon, rest and take care xx

Canarylady profile image
Canarylady

Dear Linny3,

I am so so sorry you ve caught this awful virus,I understand how you must be feeling.

With having pmr also on top of it,you must be tired out.

I m sending you love and best wishes for a swift recovery.

Xx

Ruth

agingfeminist profile image
agingfeminist

If you have PMR prednisone is a blessing. With PMR pain you can't move or function in any way. Of course, we all want to 'come off' the drugs we take...we would not take them if we didn't need them. PMR has a will of its own...all of us gently try to reduce our drugs...we don't need rheumatologists to tell us that. But we do need rheumatologists to understand that we reduce as much as we can and if we are taking pred that is because we need it to function.I can't imagine I would have carried on living without the blessing of this drug.

Hope you stay as pain-free and infection-free as possible

whitefishbay profile image
whitefishbay

I think maybe the reasons you didn't get super sick was down to the vaccines. That is what I felt anyway. Still don't have my full sense of taste and smell back. By day 12 I felt fine just a bit tired.

Sophiestree profile image
Sophiestree

I think others have said it all. I would just add that getting tested is just as important to get the true positive case numbers, rather than you being pretty certain it is covid. Plus it can also see whether it is the new Omicron strain or not. So it more for others. Hope you recover soon.

Pixix profile image
Pixix in reply to Sophiestree

Quite agree…it’s definitely important,E specially as you may have the new omicron variant! Take care!

keeptalking profile image
keeptalking

Hoping you have a quick pick up when the horrible virus leaves you.

yogabonnie profile image
yogabonnie

hope you are feeling better soon!!! It is all so unfair.!! but then so is our PMR.. the vaccine might have saved your life. But it still feels cruddy I am sure. It is also still important to be tested...for statistics and other people..sometimes someone will decide to get vaccinated because of your case number. who knows. Hope every day is better and better.

bresbo profile image
bresbo

Good for you! I think that someone who knows that they don't know, knows far more than someone who thinks that they do.

So where does that leave me and the above sentence? Duh!

Alchemy8 profile image
Alchemy8

And yet steroids are on the menu to reduce the inflammatory response in hospital treatment....

Linny3 profile image
Linny3 in reply to Alchemy8

That is what I was thinking. Maybe upping my prednisone would help all the aching which is in all the same spots where pmr causes me so much pain.

Alchemy8 profile image
Alchemy8 in reply to Linny3

Well I can't say yeah or nay but why not try as mentioned below some other ways of reducing inflammation like Vitamin C in mgs. I take 5 mgs at one go in pill form. And of course other more natural anti-inflamms. drfranklipman.com/2021/08/0...

Noosat profile image
Noosat

Linny, I do feel for you as I cannot imagine Covid on top of PMR. I had my 3 shots of Pfizer, but still mask up in grocery store etc, as from beginning we were told vaccine is not 100 percent a safety measure. Do take care of yourself. My daughter is home from work today with some kind of stomach virus going around and she has such a fear of infecting her 93 year old Mom. She doesn't live with me but just about a block awaay, so we generally see each other often

HeronNS profile image
HeronNS in reply to Noosat

I still behave as though no one is vaccinated. What choice do we have, really?

Alchemy8 profile image
Alchemy8

Hi Linny3. How are you doing with Vit D, Vit C and Zinc? There is an excellent podcast by Dr John Campbell on how important zinc is to keep infection down as well as protect.

youtube.com/watch?v=yISH-sC...

Linny3 profile image
Linny3 in reply to Alchemy8

I have tried zinc on a number of ocasions. Unfortunately it makes my hair fall out.

Alchemy8 profile image
Alchemy8

O dear Linny3. So sorry about that reaction. How are you doing?

Linny3 profile image
Linny3 in reply to Alchemy8

I have taken a turn for the worse this afternoon. Not sure what I am going to do. My covid test is tomorrow

PMRpro profile image
PMRproAmbassador in reply to Linny3

Keep an eye out - and call 999 if you are worried. I don;t suppose you have a pulse oximter to check your oxygen levels? If not - err on the safe side of asing for medical help.

HeronNS profile image
HeronNS

If you start to have trouble breathing you must seek medical assistance asap. Is there anyone with you, or someone you can contact to let them know your situation? You might need an ambulance as of course a neighbour or friend should not transport a symptomatic patient.

Alchemy8 profile image
Alchemy8

Linny3 it sounds really tough and with the loss of your taste and smell it seems pretty definite you do have Covid so not sure about the test as you seem pretty convinced too. It might be worth checking out the FLCCC Alliance. Information is always helpful. Also note that steroids "trend to harm with symptoms" but by Day 8 which is tomorrow will help. I am not a doctor and am only offering this as an attempt to be helpful at a difficult juncture. It is up to you but as before I think it is useful to look at supplements. This protocol is being widely disseminated. covid19criticalcare.com/wp-...

60srockguy profile image
60srockguy

Covid is horrid. Lost my smell and taste 6 weeks ago and food still tastes like dry putty...same as toothpaste. Body aches went down to start with and as I recovered from covid by day 10 the aftermath is more pain and stiffness, blocked ears and the need to take antinflammatories, codine and decongestants daily during this time I was going through PMR assessments. Who knows were it will end. Hang in there

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