COVID Vaccination

[lynda1955]

thing I made a bad decision yesterday. After cancelling twice yesterday I had my 5th vaccine.

Today is day 11 of steroids and I’m feeling I’ve gone backwards. Gp had said it was ok to have the jab but I’m not so sure.

[SnazzyD]

Oh dear, why are you thinking this?

[lynda1955 in reply to SnazzyD]

Just feeling sorry for myself, due to having some sort of pain for 2 months. Didn’t speak to Gp for 4 weeks by which time it was worse.

[SnazzyD in reply to lynda1955]

I’d give it a week of feeling off and achey before worrying about being back to square one with PMR. It’s common to feel rough and it was only yesterday.

[DorsetLady PMRGCAuk volunteer]

Are you sure it’s not just the normal after effects of any vaccine?

Try paracetamol for 24 hours, plenty of liquids and. TLC -self administered if necessary.

..and what makes you think you’ve gone backwards?

[PMRpro Ambassador]

I had mine yesterday afternoon too - can't feel a thing! And even the doctor said he was impressed I'd decided to have it - the correct decision he agreed - since last year it woke up my atrial fibrillation good and proper which qualified me to go on the waiting list for an ablation which should have been done early Dec but is postponed to early January. As he said - if the vaccine did that, what would Covid do? I have no desire to find out - and so far I haven't knowingly had it.

If you have had pain for 2 months you can't really blame the vaccine - but you do need to talk to your doctor about it. You may have gone to too low a dose of pred and let in a flare.

[SandraLinks in reply to PMRpro]

I just had Covid, no boosters, but I did take the two original vaccines. It was like a cold, and I have been on methylprednisolone for over 4 years.

[ian16527 in reply to PMRpro]

Had Covid in September. My wife kindly gave me it. It was much more than a cold, with fever, shivers, sweats and I thought my head was going to explode. This lasted 24 hours then couching up phlem for 2 weeks and more fatigue for about a month. Odd symptom at the start was a indigestion type pain in the chest for a day or so. Wife was much worse as she has lymphoma and had to have the antivirals.

[PMRpro Ambassador in reply to ian16527]

I suspect your experience is more common than that of the people who say it's just another cold! My 2 HCP daughters have been given it by patients a few times - and none of them was "just a cold"! Luckily Long Covid hasn't made an appearance yet ...

[Nap1 in reply to PMRpro]

Hi PMR pro. I had vaccines and boosters but when tested I had zero antibodies. No reaction to the vaccine. No protection either. I did get Eveushield. However for this newer Covid….eveushield does not work. Not getting vaccinated for naught. Did have Covid In January. Aside from 103 fever and being delirious. I was OK in the hospital for five days. Came back to life quickly to my surprise.

[lynda1955]

speaking to gp next week, she was hoping to start tapering my medication ( dose 15 ).

[DorsetLady PMRGCAuk volunteer in reply to lynda1955]

You've only been on Pred for less than 2 weeks - if your GP is thinking about reducing after such a short period, then she needs to think again.. or you'll end up flaring and taking more rather than less.

You need to be on initial dose at least 4 weeks...and some of us who have seen what happens when others are reduced too quickly would say 6 weeks... but too many doctors would scoff at that.

[SnazzyD in reply to lynda1955]

Hmm, sounds a bit too soon to start reducing and before you do, you need to know you are on an even keel. 4-6 weeks is more like it. Yes, the vaccine may have muddied the water and require you to wait a bit longer, but in the grand scheme of things it isn’t much.

[mary70 in reply to SnazzyD]

Dorset Ladies speaks through knowledge and experience, therefore, the practical advice given seems the way forward.

[DorsetLady PMRGCAuk volunteer in reply to mary70]

Think you meant this for lynda1955 but she should see it anyway rather than SnazzyD to whom you replied… a HU issue sometimes… 🌸

[SheffieldJane]

I can relate to what you are saying. My 6th Pfizer jab seems to have sent me back to the beginning, with constant flaring and the inability to get in and out of cars, stand for longer than 15 minutes. I had a stiff painful neck which seems to be easing with more activity. Not sure how to interpret these symptoms and treat them. Sick day rules seem to only help if I stay on 5 mgs extra. My last vaccine was painful from the start and seemed to cause a return of PMR pain and stiffness. I am kind of in denial about it. This seems inexplicable to family I saw only a few months ago because they can see the deterioration. It is embarrassing apart from anything else. After 8 years of PMR then LVV/GCA I thought I was reaching the end.

You are new to the disease so it might be comparing apples and oranges. I have never had a reaction before.

[herdysheep in reply to SheffieldJane]

🤗

[Blossom20 in reply to SheffieldJane]

Oh dear poor you! I feel for you. Hope you feel better soon, x

[Sillydogsmum]

I reduced dose and had my sixth vacc at the same time. PMR symptoms increased 2 weeks after. I have learnt somewhat painfully that changing more than one thing at a time with PMR leads to confusion, Pred getting blamed unnecessarily or ditto other. Suggest follow DL'S advice. Decision to have Covid vac still a sound one, not a nice virus!

[Koalajane]

I have had all vaccinations offered and not had too much trouble. I have felt achey for a day or so after and that has been it. Hopefully you will start to feel better soon. In my opinion you have done the right thing having the vaccination.

[DorsetLady PMRGCAuk volunteer]

Okay…but SnazzyD is extremely experienced and knowledgeable and has a medical background…

[mary70 in reply to DorsetLady]

Just because SnazziD is highly knowledgeable because the lady has a medical knowledge background - does not always lend well! Individual patients tend to reply through their own knowledge - and react to it! Observations are vital to listen too - and in more ways than one (by reading factual medical evidence) or making their own opinions are necessary to listen to and to hear!

[PMRpro Ambassador in reply to mary70]

I'm sure you are correct in your feelings - but even more important is the personal experience of the disease process and its medication, especially here. DorsetLady, Snazzy and most of the rest of us have years of that so what we say may sound strange to someone from outside the group who doesn't.

[mary70 in reply to PMRpro]

I have been a member for healthunlocked for a long period of time. For your information, my background shows that I am an atrial fibrillation patient. Furthermore, my interest refers to those in need. As I have said before that I totally support DorsetLady. An apology is also in order. For example, I am knowledgeable about the effects of atrial fibrillation and intellectually, I have my relevant points of view.

[Viveka in reply to mary70]

I can't see any difference in what Snazzy and DL were saying. Both extremely helpful as usual.

[mary70 in reply to Viveka]

Hello Viveka - My background refers to my knowledge occurs because I am an atrial fibrillation patient and I have been a member of healthunlocked for many years. Furthermore, in addition, I regard medical knowledge as important - (two degrees and a master of arts) - therefore, to judge me when I have said nothing untoward is inappropriate. So far, I have not said one bad attitude -- reread my replies

[Tahiri in reply to mary70]

You think that you’ve gone backwards, because in all likelihood you have. Since my husband had a booster he has had a continuous cough, and has had many hospital visits to determine the reason. They found nothing. We can only assume it was caused by the booster. The vaccines neither stop infection nor transmission of infection, so what exactly is their purpose. ? I stopped accepting boosters and am instead , taking steps to rid my body of the spike protein. I know it continues to be made but hopefully knowledgeable people will discover a way to stop its reproduction. This is an unmitigated disaster on a Global scale. In my small home town there has been an unprecedented amount of deaths among young people.

[PMRpro Ambassador in reply to Tahiri]

The vaccines do what has been very obvious - they make the infection you suffer far less severe and they reduce the likelihood of severe illness, hospitalisation and - definitely - death. They do reduce the transmission because the viral load is much lower and so you are less likely to pass it on outside your immediate close contacts. Things have changed since those claims were widespread and had substance and the later iterations of the vaccines have prevented mass development of the newer variants.

"A previous study revealed that vaccination shows a low protective effect against the delta variant except for a satisfactory protective effect against severe infections ... However, we still found an obvious protective effect of the vaccine in patients with the Delta variant. When compared with nonvaccinated or one-dose vaccinated patients, two-dose vaccinated patients showed significantly lower viral load and shorter time to peak viral load, and viral clearance time in these patients was also significantly shortened. Pouwels et al. confirmed that vaccination was able to reduce the incidence of new infections and peak viral burdens."

ncbi.nlm.nih.gov/pmc/articl....

[mary70 in reply to mary70]

DorsetLady

"Are you sure it’s not just the normal after effects of any vaccine.

Try paracetamol for 24 hours, plenty of liquids and. TLC -self administered if necessary. .and what makes you think you’ve gone backwards?"

[S4ndy]

I've had all the COVID vaccinations offered. Usually I had sore arm for a few days and felt tired and achy too. So took paracetamol to ease that. I've been on prednisolone since 2016 and take a maintenance dose of 5mg daily.

Last Wednesday I tested positive for COVID. First time I've had it. So very glad I had the vaccines as I cannot imagine how bad it might have been had I not. I am extremely tired and had 2 days of shivers, aches and general malaise. I had raging sore throat and stuffy nose. No cough though and thankfully my oxygen sats stayed above 90%.

I did qualify for treatment and was offered it but, because of possible side effects and drug interactions decided against it. The NHS COVID Assessment Nurse supported my decision but left me a direct telephone number in case I changed my mind.

To be perfectly frank I was scared when I saw those 2 lines appear on the test. However, I think the vaccines have done their job and reduced the symptoms to a bad dose of the flu. Interestingly, what made me take the test in the first place was that the vaccination site on my arm became a bump and hurt a bit. Very strange but it prompted me to test otherwise I would have put my sickness down to catching the flu!

Day 5 today and beginning to feel more human. Still sniffly and my cat doesn't recognise my voice😂 Think I am on the mend though. So glad I had those vaccinations.

[Viveka]

It was the same.

[Croft9232]

IT WASN’T ANY DIFFERENT.👍

[PMRpro Ambassador]

It isn't!!!! And the criticism is coming from someone who hasn't ever had PMR/GCA either!!!!

[mary70 in reply to PMRpro]

Sunday, 17 December 2023

In response - further information

"Hello Viveka - My background refers to my knowledge occurs because I am an atrial fibrillation patient and I have been a member of healthunlocked for many years. Furthermore, in addition, I regard medical knowledge as important - (two degrees and a master of arts) - therefore, to judge me when I have said nothing untoward is inappropriate. So far, I have not said one bad attitude -- reread my replies"

I've already had Covid 19 injections plus

PMR pro

"It isn't!!!! And the criticism is coming from someone who hasn't ever had PMR/GCA either!!!!"

Please reread my response which refers positively to DorsetLady.

Please can you explain why I am being judged in this negative manner - without proper response to me personally?

[ImC_]

I think it is that DorsetLady said "at least 4 weeks" and you said "4 -6 weeks is more like it". Most of us realised you were actually replying to Linda1955 and with the very same advice as DorsetLady but perhaps Mary70 misunderstood.

[ImC_]

I hope you feel back on track very soon Lynda1955. If any consolation, I've taken all the jabs I've been offered, whilst on Pred, and been fine except for a bit of a sore arm. I think on balance you made a good decision. And now you know not to feel rushed about tapering, too!

[lynda1955]

thanks everyone, going to take a day at a time x

[cranberryt]

After my first jab I had a flare which forced me to increase my prednisone by about 5mg and it took me 3 months before I could reduce again.