Flare after COVID vaccine: Hi everyone. I had my... - PMRGCAuk

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Flare after COVID vaccine

EeneeBee profile image
32 Replies

Hi everyone. I had my COVID vaccination yesterday morning (hooray!) but today, apart from a sore arm, I’ve got the old pain back in upper glutes and general fatigue. I’m presently on 5 reducing to 4 1/2 mg by the slow method. Do you think I should up it for a few days or sit it out?

Thanks

Ellie x

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EeneeBee
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32 Replies
123-go profile image
123-go

I had mine on Friday. I had some stiffness/slight soreness in my lower back but that's cleared up now. Currently on 2.5mg Pred. I would say sit it out for a day or two and see how it goes. (I put it down to excitement!🙂)

Feeder profile image
Feeder in reply to 123-go

Hi there, I had my Covid vaccine a week ago, the Nurse administering it asked what medication I was on. Prednisolone I replied. He said it will take a bit longer to become effective due to Prednisolone affecting the immune system. For a few days afterwards I developed low back pain and tiredness. A week on all symptoms have subsided.I hope that helps.

123-go profile image
123-go in reply to Feeder

I think your reply was meant for EneeBee. 🙂

PMRpro profile image
PMRproAmbassador

I'd stop the reduction - because even half a mg can make a difference to how you feel vaccine or no vaccine. It isn't a race and 5mg is already a good low dose.

EeneeBee profile image
EeneeBee in reply to PMRpro

Thanks PMRpro, I’ll stay on 5 for a few days

Maisiek profile image
Maisiek in reply to PMRpro

I’ve just got to 5mg ( no effects from

Covid vaccination) but thought I might stay at 5mg for a bit having read this was what one rheumy suggested? Shoulders painful, walking not great ?

PMRpro profile image
PMRproAmbassador in reply to Maisiek

Rod Hughes in Chertsey likes to do it.

However - it sounds to me as if you have already overshot the dose you need at present. As I just said somewhere else: your symptom relief at the starting dose is your guide - you shouldn't feel worse at the end of a step down than you did at the beginning.

Silver-Babe profile image
Silver-Babe in reply to PMRpro

I’m interested in this topic. Been on 15mg PMR since January 5th, first diagnosed.. Had vaccine on Friday but today - Monday, pain coming back in arms/ sockets! I ask myself, Did I forgot to take pills yesterday morning? Or now is it reaction to vaccine? I don’t suppose any of us knows, but I’m a bit worried the pain is coming back...... can’t wait to take PMR after breakfast. I’m on a high dose after all, so is this a flare up?

MrsNails profile image
MrsNails in reply to Silver-Babe

Hello SB

It’s hard to be certain but the other possibility is maybe you have been overdoing it a bit, it’s so very easy once the pain improves to start doing ‘normal things’

But firstly you need to get a Daily Pill Box (just for your Pred) fill it up once a week, then it’s very easy to check if you have taken your Pred or Not! Here speaks the Voice of Experience! 😉

Have you taken some Paracetamol for the achy arms (post vaccine pain)

Hope you feel better later & take it easy today 💐

MrsN

PS - Sorry, l didn’t Welcome you last week, been somewhat below par.....

Silver-Babe profile image
Silver-Babe in reply to MrsNails

Thank you so much Mrs Nails. What hood ideas you give me. Will do everything you say and am just longing for my steroids!!

MrsNails profile image
MrsNails in reply to Silver-Babe

What time do you normally take them?

Silver-Babe profile image
Silver-Babe in reply to MrsNails

After breakfast about 10.00 am. Take a stack of other pills before breakfast. Thought we had to take PMR after food?

MrsNails profile image
MrsNails in reply to Silver-Babe

As Pro has said, take them now, ideally everyone should take Pred before 9am which is when a ‘normal’ cortisol levels are at their highest & it trails off during the day but our adrenal glands can trigger us to make more if necessary.

However, once you have been on Pred for 3weeks or more our Adrenal Glands notice we are getting a daily dose so they stop (temporarily)

Ideally you should take them when you wake say 7.30am(ish) if you have concerns about stomach issues keep a biscuit to hand it better still eat some yogurt.

I take mine when l wake up then read the News, the Forum, emails etc before l have my breakfast so the Pred has kicked in by the time l’m getting up.

Best Wishes

MrsN

You may read other experiences about taking them at 2am/4am but that’s way down the road & to begin with you must stick to your Doctors Recommendations to dose & timing until they can see how you respond.

Silver-Babe profile image
Silver-Babe in reply to MrsNails

Ok - thanks- will do. I have mentioned this before but I’m still waking up at 5 am every day which makes me tired. One of you wrote that the pred kicks in at 2:30 am which probably accounts for it. However it does seem to make me very happy and buoyant. Not today though. Is this a common occurrence?

MrsNails profile image
MrsNails in reply to Silver-Babe

Yes, Pred can make you ‘happy n buoyant’ l think maybe you missed yours yesterday - will write to you later l have to take my car for it’s Service & MOT at 11am

MrsNails profile image
MrsNails in reply to Silver-Babe

Hi SB

I’m back! If you are still waking up at 5am you could consider taking your Pred then with some yogurt &/or a hot drink then try n settle back down for a couple of hours, try not to stress about it because it becomes a vicious circle.

You mention that you read that ‘Pred kicks in at 2:30am’ but l think you maybe a bit confused on that a little.

I think l noticed Dorset Lady sent you her Info Pack so maybe worth a reread, there’s an awful lot to take in & understand, it takes a while.

Plain Prednisolone/Prednisone kicks in, in about an hour after you have taken it, Coated Tablets takes around four hours as it doesn’t start working until it’s left your stomach.

If you have anymore questions don’t hesitate to ask.

Best Wishes

MrsN

Silver-Babe profile image
Silver-Babe in reply to MrsNails

I’ve replied below

PMRpro profile image
PMRproAmbassador in reply to Silver-Babe

No - taking pred at 2am means it is in the system and working at 4am, it takes about 1-2 hours. The inflammatory substances that cause the trouble are released in the body at about 4-4.30am so the pred is there ready and waiting to work.

PMRpro profile image
PMRproAmbassador in reply to Silver-Babe

Then take them - you are taking them quite late in the morning by many people's standards! The earlier you take then in the morning the less inflammation has developed and the quicker they will act. 15mg is not that high a dose, it's a usual PMR starting dose. But it doesn't give you permission to go back to normal life - so were you doing anything over the weekend?

MrsN has said everything I would have said.

Silver-Babe profile image
Silver-Babe in reply to PMRpro

Yes! Big walks in the snow - good for me surely? Trying to excercise every day. I’m also on the Keto diet as I’m borderline diabetes. But I’m not fat, just need to lose another 5 lbs to get me down to 11 stone- haven’t been there since I was 30! I felt Marvellous ever since I have been on steroids. But just a bit worried this morning with my having to pick up my arm to get it across my body. You know the feeling?

PMRpro profile image
PMRproAmbassador in reply to Silver-Babe

Not if they are too much - pred hasn't cured anything, it is managing the inflammation but the actual disease process is continuing in the background, attacking your muscles and other soft tissues leaving them intolerant of acute exercise. Walking in snow can be VERY hard work. I can walk into the village here easily - until it snows (which this year it has done with relentless regularity!). Even a small amount of snow makes a massive difference because the grip is less.And I also find a snow day makes me ache far more than usual - even without being out in it!!!

Silver-Babe profile image
Silver-Babe in reply to PMRpro

I’ve replied below

Silver-Babe profile image
Silver-Babe in reply to PMRpro

Ok! I thought they had to be taken after food but I will change my routine. Many thanks to you both.

YuliK profile image
YuliK in reply to Silver-Babe

I think it’s a reaction from the vaccination. You should rest and drink plenty of hot drinks.

Feel well.

YuliK 😷

Silver-Babe profile image
Silver-Babe in reply to YuliK

Gosh! That's interesting. The trouble is this is so new nobody really knows what is going on. Am speaking to my GP tomorrow, so will ask her abou t it. But thank you so much for suggesting it.

Silver-Babe profile image
Silver-Babe in reply to Silver-Babe

I hope you kind souls are still reading this. Well it’s now 6.40pm and although I obviously took my 15mg at 9.45am , I began to feeling better. Had a quiet day snd took a little stroll in afternoon of ¾ mile. Then I sat down and played on line bridge. But now I’m so tired! I wonder if it is the vaccine? Some others I know said they were wiped out for 24 hours but it is 3 days now since I had it. Is it the PMA?

Tawnyowl1 profile image
Tawnyowl1

I had my Covid Vaccination on Wednesday and so far so good. No worse PMR symptoms and my arm was only slightly sore if I touched the vaccination site. On my slow taper to 4mg. Hope your PMR symptoms settle down soon xx

dphu profile image
dphu

My husband and I both had our vaccinations on Wednesday. Tenderness around the injection site lasted about 3 days. We also both (only I have PMR) were achy and stiff, especially around the groin. This went by Sunday. I'm on 5.5mg Pred at the moment and did not increase it. Hope you manage it OK x.

EeneeBee profile image
EeneeBee in reply to dphu

Thank you and everyone else who replied. I feel a lot better today tho the arm is still sore ( but everyone else s is too!) Done 5k steps this morning so will continue with the v slow taper.

Iloveholidays profile image
Iloveholidays

I had my vaccine, only had sore arm for a day or so after, but then 8 days later had a day where I thought I hadn’t taken my Pred as upper arms were stiff, buttocks ached, completely fatigued and wiped out on the sofa all day. I had taken Pred and it was only one day but I wonder if it’s connected to the vaccine 🤔🤔 . I’m on 9mg reducing DSNS to 8.5.

EeneeBee profile image
EeneeBee in reply to Iloveholidays

It’s a funny old thing this PMR. I can have days like that just from being stressed and/or having a really bad nights sleep!

ChinaWuntoo profile image
ChinaWuntoo

Referring to a response up-thread...

If you are going to get a pill box, why not a 28 day one? It will help when / if you decide to do a very slow taper. I have one and find it very helpful. They are cheap on-line.

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