wiped out after second pfizer jab

[bBarnabus]

Ten days after my second pfizer jab i went dowhill rather quickly. Exhaustion, stiffness and pain in lower back, buttocks and groin. I have been getting flares regularly over the last year, this seems to be much worse. I've gone up to 21mgs deflazacort which doesn't seem to do much. I'm left pretty much incapable of doing anything on my feet for more than half an hour. Its been over three weeks now and I seem to be getting worse. I am supposing this is down to the effects of the jab. Any ideas please?

[PMRpro Ambassador]

I had a flare after the second Moderna jab - not so much pain as fatigue which was fairly awful. It's improving after about 8 or 9 weeks. I don;t do things where I have to stand for long anyway - but walking for more than about 45 mins even on the flat and I am concentrating to walk the last few hundred metres home!

[bBarnabus in reply to PMRpro]

Thanks for the reply. Do you think it would be advisable to increase the steroids? Will it help? I feel good for nothing at the moment? Driving my partner mad.

[PMRpro Ambassador in reply to bBarnabus]

I went back from 14-ish to 15 so not much change. It was the fatigue more than anything else and the pred rarely helps fatigue for me. Just had to ride it outl

[bBarnabus in reply to PMRpro]

Thanks again I hope it's not eight weeks. Also have the heat of Andalucia to contend with. It's not just me it's the people around me that it effects. I stagger around grunting, forget things and often have a long face. I can seldom think of anything else but my condition

[PMRpro Ambassador in reply to bBarnabus]

We have had low 30s here too which isn't bad for half way up a mountain! Though we have the consolation of 15C and below overnight thank goodness.

[SnazzyD in reply to PMRpro]

Oh gosh, that’s rotten. I hope things pick up. Sorry if I’ve missed this. 💐

[DorsetLady PMRGCAuk volunteer]

Would say majority is down to reaction to vaccine, PMRpro was pretty rough after hers, so sure she’ll be along shortly to advise.

However, looking at previous posts, I think your flares are probably due to you trying to reduce too quickly, 10% every week or two weeks is hardly time to know your are okay on current dose, before you reduce again . Four weekly would be better, so maybe consider that once you get over this blip.

[bBarnabus in reply to DorsetLady]

Sorry if my profile is confusing I will check it. No I reduce 10 percent per month at the most unless I have flared then I increase and go back down again to where I was before

[DorsetLady PMRGCAuk volunteer in reply to bBarnabus]

Ok….well not ok if you keep flaring..

Maybe give yourself a break from reducing for a while. Get this latest flare under control, and then stay put (dose wise) for a couple of months.

[bBarnabus in reply to DorsetLady]

Ok Thanks I reckon my maintenance dose must be at least 15mgs deflazacort = 12 pred I have to get used to that

[PMRpro Ambassador in reply to bBarnabus]

If you repeatedly flare at a particular dose it usually means that is where you need to stay for a while - you are never reducing relentlessly to zero, you are looking for the lowest effective dose, a process called titration.

[SnazzyD]

The vaccine notwithstanding, I agree with DL, the timescale of reductions sound too small for you to know where you are with the new dose. It is a difficult conundrum though because putting up your dose to feel better may not work entirely because of the vaccine but you may need it to have a break from reductions at the moment.

[toots1951]

My Rheumatologist confirmed that the first Pfizer caused a flare affecting my hands and the second one last month caused a flare in my back which is still very painful. Had to up my steroids

[Susan1705]

I had a mild flair after 1st Pfizer and worse after 2nd, including new symptoms of GCA which I am now being treated for. Agree with previous posts slow and steady with reducing the steroids

[bBarnabus in reply to Susan1705]

My flare after the second Pfizer came ten days later. At first I didn't even think it was related.

[DorsetLady PMRGCAuk volunteer in reply to bBarnabus]

It may not have been directly, probably a combination of factors.

[cranberryt]

I had a major flare after my jab. I had to triple my dose from 3is to 9ish. It has been 2 months and I am back down to 4mg but am having to split my dose morning and night to make it through the night. My relapse was back to the kind of pain I had at the beginning. Couldn’t dress myself, etc. My doctor said to increase my dose a couple mg but I ended up going up 1mg per day until the pain went away, stayed there for a week and then started slowly dropping again. When 6mg wasn’t enough to make it through the night, I started splitmy dose which was something my dr. suggested that helped me in the past. Doing that actually helped me get lower faster because I don’t need as much during the day when I am moving more. My worst pain is when I am at rest, aka overnight.

[PMRpro Ambassador in reply to cranberryt]

What sort of time is your pain bad? Is it all over or more localised? And does it improve as soon as you are out of bed and moving?

[cranberryt in reply to PMRpro]

Depends on the day. Usually though it’s either my knees or my neck and shoulders. It will wake me up in the middle of the night and makes it hard to sleep. It improves with movement as I get going in the morning.

[PMRpro Ambassador in reply to cranberryt]

Has your rheumy ever considered you may have something else? Nighttime pain that improves with movement is not typical of PMR - it is more common in the spondyloarthropathies. I know a few people who were first told it was PMR, even GCA, but it turned out to be a spondyloarthropathy.

verywellhealth.com/spondylo...

[cranberryt in reply to PMRpro]

My GP and I are pretty confident it is PMR. Initial onset was sudden. One day I was fine, the next I was not. Started with groin/hip girdle. Xrays negative. Did a month of PT/physio which didn’t help at all. During the month, pain spread to neck/shoulders, arms, knees. Bilateral. Pain killers didn’t help. Couldn’t dress myself, get in/out of car, brush my hair, etc. Switched to a standing desk because resting made stiffness and pain worse. ESR was elevated. All other bloodwork normal. Movement helped and rest did not. Felt 80% better within 24 hours of starting steroids. This is all textbook PMR from my research. It’s been 2 years and reduced from 20mg to 3.5 before this flare. I have read lots of information that says PMR pain is worse at rest and worsens overnight, with the morning after such long rest beimg the worst. So I am curious why nighttime pain and pain that lessens with movement wouldn’t be PMR? In my mind, it seems to fit perfectly? I did read the page you sent and it doesn’t ring true. Though being 50, I know I am on the young side and it’s possible to have additional issues show up or a different dx become clearer over time.

[PMRpro Ambassador in reply to cranberryt]

Just wondered - because they can have polymyalgic presentations. PMR pain isn't really worse at rest - but sitting still can lead to myogelosis developing which is noticeable on moving. It is thought about a third of GP diagnoses of PMR are incorrect. The apparent increase in PMR pain overnight is actually because of the new dollop of inflammatory substances shed between 4 and 4.30am. Often people can get up to the bathroom between 3 and 4am and be absolutely fine - but at 5am they can hardly move.

[cranberryt in reply to PMRpro]

Thank you!

[merril in reply to PMRpro]

PMRpro your reply to cranberry set me thinking. I have just had the result of the MRI scan on my back and in the conclusion the principle findings relate to spondyloarthritic changes on both L3 and L4 exiting nerve roots. lots more abut impingements and hypertrophic facet disease. Is it possible I have been misdiagnosed with PMR? ,

I can't ignore the scalp pain, the pain in one arm and swelling in legs ankles and feet and now being hypertensive. Pred wise I decided reducing .5 mgs over seven weeks , my GP surgery is shut and the rheumie has been on holiday since May so it is difficult to talk to anyone. So I have just carried on waiting for the MRI result until finding your reply tonight.

[PMRpro Ambassador in reply to merril]

I honestly don't know - but it is very possible the spinal problems are causing lower body pain:

spine-health.com/conditions...

Was there no mention of neck degeneration? I know one lady with ankylosing spondylitis whose symptoms were first diagnosed as PMR and she later developed unusual symptoms that are sometimes found with GCA and was assured it was GCA. It was the AS that was causing restriction of blood flow to the head.

[alliebc]

I had a flare of PMR symptom pain and stiffness after my second Pfizer jab. I increased the prednisone dose by 5mg for three days then tapered fairly quickly back, which seemed to do the trick. I waited a couple of weeks at that level and as I was feeling Ok have just resumed DSNS to drop another Mg. Guess I was lucky. Several friends had tiredness, nausea and light headedness after their second dose of whatever.