PMR and Covid vaccine experience: Having had my... - PMRGCAuk

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PMR and Covid vaccine experience

Jumpshot profile image
Jumpshot

Having had my second covid vaccination 5 days ago I am finding my PMR symptoms are heightened. I feel like I did when diagnosed 2 yrs ago.. I am currently on 4 mg. Prednisone and Actemra injections weekly. Curious what others are experiencing. Thank you in advance!

39 Replies

Do you know if you had Pfizer or Oxford?

Jumpshot profile image
Jumpshot in reply to Maisiek

Phizer

Oh Dear

I thought it was just me having these symptoms.

I had my #2. Pfizer vaccine on the 22/1/21Two days later after the jab, I felt really rotten. Flu like symptoms and my PMR went haywire.

All I wanted to do was sleep. So I just rested and drank plenty of fluids.

Today I still feel tired. Pains not so severe

I’m sure it will be better in a few days, but it’s still better than getting the Covid19 virus.

Hope you will feel better soon Jumpshot.

YuliK age 78 years

MrsNails profile image
MrsNails in reply to YuliK

Sending Hugs 💗

sailorman profile image
sailorman in reply to MrsNails

Hi I have had my first vaccination Phizer 12 Jan and have had a PMR attack I am on 1 mg at the moment last Friday 22 Jan I had bad head aches and jabbing pain in my temple left side only, I contacted my doctor who told me to take 5 mg pred and booked me in for blood tests on Monday Blood test showed no problem so, another doctor in the practice said not too worry and go back to 1 mg Pred, I have continued with 5 mg pred because the PMR pains were reduced, I spoke to my doctor who told me to continue with 5mg pred if that made life easier he will call me again in a few days to see how i am getting on, that will be the end of this week, I am now suffering all the symptoms i experienced back in 2016 when I was first diagnosed with PMR weak legs etc I started on 10 mg pred. Its a great relief that I am not the only experiencing in this.

Mike

Blossom20 profile image
Blossom20 in reply to sailorman

Sorry to hear you're feeling bad. Sounds horrible. Hopefully it will be short lived. Thanks for sharing. Let us know how you progress.

Thelmarina profile image
Thelmarina in reply to sailorman

Post code lottery bad enough - you sound as if you have a GP lottery!

sailorman profile image
sailorman in reply to Thelmarina

Hi Thelmarina thank you for your reply,No we have an excellent doctors practice they are so busy that if you want to have a chat with a doctor quickly you have to be pleased with which ever doctor is available all I really wanted was the results of my tests.

Mike

Jumpshot profile image
Jumpshot in reply to YuliK

Thank you for sharing. Hope you too, will be feeling better soon!

borednow profile image
borednow in reply to YuliK

My sister had her first Pfizer vaccine last Saturday morning and had symptoms exactly like yours, although she doesn't have PMR. Went to bed, rested etc., and I've just spoken to her now and today she's fine. Hope you too make a swift recovery.

maria40 profile image
maria40 in reply to YuliK

I sympathise. I had my first vaccination yesterday (Astra Zeneca) and feel dreadful today. Feverish, sick and exhausted. I got very little sleep last night although I felt very tired - I'm taking paracetemol and just hoping this will pass quickly. As you say it's better than getting Covid but doesn't feel pleasant. Upside is it doesn't seem to be affecting PMR/GCA. I know there has been some doubt about using the AZ vaccine for older people (I'm 80) as there were none in their trials. I'm sure this will pass quickly but I'm now rather dreading my second dose.

PMRpro profile image
PMRproAmbassador

They have said that reactions to the second jab are more than those to the first one - which is to be expected as the immune system is ramping up again.

Constance13 profile image
Constance13 in reply to PMRpro

Oh - looking forward to that!🤨 Will have the first jab on 5th March.

Thelmarina profile image
Thelmarina in reply to PMRpro

Yes, my consultant niece, very robust, ran a temp and slept for 16 hours after her second jab. All good now though.

PMRpro profile image
PMRproAmbassador in reply to Thelmarina

Sounds like an excellent response :)

Had the first Pfizer jab yesterday and today I feel as if I am coming down with a virus. However, so far, I don't feel as bad as the vaccinator said I would!

PMRpro profile image
PMRproAmbassador in reply to Ansteynomad

Blimey - that is the sort of encouragement anyone wants!!!! OTOH - suppose it stops people panicking!

Ansteynomad profile image
Ansteynomad in reply to PMRpro

For the record, I feel fine today, although my arm aches a bit now.

I wonder if that is a sign it’s working? My fear is that my immune system is so dampened down that it won’t work at all. Bed, fluids and paracetamol and a conviction that it’s working might be the answer.

Hope you feel better soon. I am due my second jab in April, so good to be aware that we could get more of a reaction second time round.

Had my first pfizer vaccine last wednesday and haven't been able to face a proper meal since.

I was the same, had really bad shakes, headaches, didn’t feel good at all.

I had my first Pfizer jab on the 18th January. The next 2 days I had a slight headache about lunchtime for 10/15 minutes. Other OK.

Oh dear , thats what worries me !! Thought nothing of having vaccines before . But now because i feel so fragile after being strong , just hate the thought of feeling any worse.This i s a real concern for me , to the point im really not sure !

Lori67 profile image
Lori67 in reply to Viv54

It only lasted 2 days for me, I would have the vaccination if I was you as I am sure catching full blown Covid would be a lot worse.

Had my first jab on Saturday morning and felt absolutely nothing since 🤞🤞. Now left wondering if my immune system is working at all 😂😂. What I have noticed is that the younger people (like those I know in the NHS ) seem to have had more symptoms than me and my older friends.

Is this because of our weakened immune systems or are we more used to having vaccinations?? Mystery.

But definitely recommend having the jabs as the ordinary flulike aches are better than Covid symptoms. Take extra care of yourself for a few days.

Hi, l was just wondering if anyone who’s posted here are actually using the C-19 Covid App as this is the sort of data they are trying to capture.

It’s available on Smart Phones in the App Stores, l will need to check if there’s an option for a Laptop/PC DorsetLady may know.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to MrsNails

Unfortunately only by App - which is a shame.

MrsNails profile image
MrsNails in reply to DorsetLady

Thanks DL but if anyone does have a smart phone they need as much info as they can possibly get......

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to MrsNails

Yes they do, and add new questions as they go along.

Lucky you having both doses. I’m yet to have any ?

I am a nurse. It has been available to me as an essential employee. Here in the US many over 65 are receiving their first as of this week.

Keep up the good work .

I had my first shot Pfizer a week and a half ago, due for second Fed. 3rd. The next day I shoveled the driveway DEEP snow, no problem. Mild headache was all, not achy or anything. But I hear from others who don't even have PMR that the second shot gives more achiness, etc. I hope not but I'll soon find out! Still well worth getting whatever vaccine you can get for Covid in my mind. I'm age 69, taking 5 1/2 prednisone. I got mine cuz I'm a substitute teacher. Still nowhere near enough vaccine here, many are waiting and waiting to get it. Oh, as I think I mentioned here somewhere before, I did up my pred for two days by 2 mgs I think it was then back to my normal dose. Maybe that helped.

HeronNS profile image
HeronNS in reply to artfingers

They do say that side effects show the vaccine is working to stimulate immune response. Why did you increase your pred?

artfingers profile image
artfingers in reply to HeronNS

If I know I am going to be stressed or have to deal with something like the vaccine, I increase just a little for a day or two. Seems to work for me.

Had my first (pfizer ) jab a week ago now and only symptom was total loss of appetite. Almost back to normal today, but looking at the other posts, I'm not looking forward to the second jab!

Me too, I had the pfizer vaccine a week ago - initially sore arm which righted itself after a couple of days and at day 4 or 5 after the jab I started experiencing much sorer arms ( top and shoulder) - I am now on day 7 after the vaccine and am considering , do I phone docs and push for a blood test, is this a result of the vaccine ( I'm on 2mg of prednisolone for PMR, and am struggling to reduce further) , or ride it out for at least another week and hope my immune system settles down?

Update since initial post. 2-1/2 wks after 2nd inj. I contacted my Rheumatologist, we increased my dose by 5 mg =9mg. For 10 days. This helped tremendously! I am now on the decrease back down. Hope everyone is doing ok, staying safe!

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