Sunshine

[Bowred]

I had appointments with my rheumatologist it been confirmed that I got Covid-19 in March it affected my Immune system and it caused PMR now on steroids I getting there each week getting better just to let all now

[SheffieldJane]

So sorry, poor you! I haven’t felt right since the vaccine, so goodness knows how bad you feel.

[Bowred in reply to SheffieldJane]

Thank you

[Kendrew in reply to SheffieldJane]

Sorry to hear you're still experiencing some after effects from your vaccination. I too have noticed that I still persistently become more fatigued than previously for doing the slightest thing. Also still experiencing some mild head pain. ☹️We both clearly need more time.

Take care Jane.

[SheffieldJane in reply to Kendrew]

Snap! A jab too far maybe? I’ve never known a vaccine programme like it.

[Kendrew in reply to SheffieldJane]

I completely agree. If I have the autumn vaccination, that'll be SIX vaccinations in just over 18mths!! My first one was Feb 2021. I'm not sure how many more I feel comfortable having. 😕

I may be wrong but I'm not aware of there having been any other vaccine in the past that's been continually repeated so frequently for such a long period of time, so my questions would be:-

- how safe is it to do this?

- do we know what long term effects (if any) this could have on our bodies?

- will so many vaccinations confuse or 'damage' our immune system further?

I'm seriously considering not having the autumn one but I need to look into things further first.

[Mamamia21 in reply to Kendrew]

I was offered my 4th jab a couple of months ago but I did not have it as I had just had Covid. Felt bad for 4 days but apart from that nothing terrible. I recently have been listening to Dr Campbell and was interested to hear him say that the vaccines were produced for BA1 and 2 and are not necessarily effective for BA 4 and 5. If this is the case why are they still giving them out? I will be looking for more information before I get another booster myself. Here is a link to his channel so you can listen for yourself youtube.com/c/Campbellteaching

[DorsetLady PMRGCAuk volunteer in reply to Mamamia21]

Not sure they are “pushing” them as much as they were. Was talking to someone yesterday who had been trying to book one (her other half has RA) , and they don’t seem to be opening up the range to anyone under 75 and /or immune suppressed.

[PMRpro Ambassador in reply to Mamamia21]

Because they are still effective in preventing serious illness even with BA4 and BA5. They never were going to entirely stop you catching it, just protect you if you did. That's the best of offer at present.

theguardian.com/world/2022/...

theguardian.com/world/2022/...

There was a brilliant article over the weekend - but I can't find it.

Was it this?

theguardian.com/commentisfr...

[Exflex in reply to PMRpro]

As I read it, it’s because the T cells are coming to our rescue. The antibodies against the Wuhan spike are pretty useless according to what I read.

[Exflex in reply to Mamamia21]

The vaccines we are being given were developed against the ancestral Wuhan spike. Unless you’re been offered something new.

[DorsetLady PMRGCAuk volunteer in reply to Kendrew]

See my reply to SJ further down.

[Exflex in reply to Kendrew]

Definite a risk of immune imprinting (original antigenic sin). Not sure when the effect starts tbh, I’ve read variously that the first jab can do it. But the more you have may cause the immune system to ignore the second generation vaccine, if and when it’s offered. Even scientists can’t decide, but the consensus indicates a risk.

[SheffieldJane in reply to Kendrew]

I have been thinking along the same lines. My body has really protested this time.

[Kendrew in reply to SheffieldJane]

I just feel I'll continue with all the safety measures I've been observing, as they've served me well so far, but at the moment I don't feel inclined to have another covid vaccination. I'll have my flu jab of course though.

[SheffieldJane in reply to Kendrew]

I have become fairly reclusive. I suppose our generation has been pretty lucky up until now, it’s our turn.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

“I’ve never known a vaccine programme like it.”..

no we haven’t , but then we have never been through a virus like this in our lifetime either have we? It’s uncharted waters for everyone.

[SheffieldJane in reply to DorsetLady]

I should have said “we”.

[PMRpro Ambassador in reply to SheffieldJane]

Let's be clear though - there has never been a pandemic of a virus like this, Mankind (or should that be personkind?) had plenty of warning that it would happen sooner or later but they put their fingers in their ears and sang lalalalala.

And the UK is the only country that has given so many jabs. Multiple jabs to get full protection happens with some other vaccines. I've had 4 - No 5 will be in the autumn.

[PMRpro Ambassador]

Do hope it turns out to be a viral reactive version of PMR - and these versions decide to go away quickly.

[Jigsawlass]

I had my vaccines with no problems , booster in November. My pmr symptoms started mid December and both consultants I have seen suggested that the vaccine may have triggered it . As yet I haven't had Covid

[Thepinkvixta]

I'm in the sane boat...consultant said my PMR was activated by the first vaccine jab...18 months on I'm still on pred (reduced multiple times and failed - currently on 5mg and adrenals are up the spout) and since been told I'm too young for PMR so now diagnosed with seronegatove inflammatory rheumatoid arthritis and have weekly 25mg methoject and 4 x 500mg sulfasalazine daily!

Still going for regular bloods...still can't get my levels right...today woke up with throat slit and tyremarks from the truck that hit me overnight...with a very positive 2 lines on my test! So covid fight round 2 here we go!

Wish me luck...

[Thepinkvixta in reply to Thepinkvixta]

Oh i forgot to say I'm just 48!

[PMRpro Ambassador in reply to Thepinkvixta]

Not too young - just it is less common in under 50s, not it doesn't happen. there are warning in the literature about missing the diagnosis in younger patients. Prof Mackie says she has quite a few in their 40s. PMR doesn't count birthdays.

[Thepinkvixta in reply to PMRpro]

At my age I've stopped counting too lolThanks PMRPro x

[PMRpro Ambassador in reply to Thepinkvixta]

Just noticed - the adrenals are not really up the spout, at 5mg pred they won't be being asked to do anything as that is plenty for the body to function. A synacthen test at 5mg is likely show little response, there might be something at 3mg but even that is unreliable. Most endocrinologists wouldn't expect anything different.

[Thepinkvixta in reply to PMRpro]

Ah I didmt explain...I tapered and then stopped the pred and all the aches and pains came back tenfold...specialist said as my 6 months in on methoject and sulfasalazine should have the inflation under control so must be adrenals not kicking in yet so has out me back on 5mg until I see her in September x

[Thepinkvixta in reply to Thepinkvixta]

Inflammation not inflation lol darned autocorrect x

[PMRpro Ambassador in reply to Thepinkvixta]

I'm afraid that if you have PMR all the MTX and sulphasalazine in the world won't necessarily replace pred - the vast majority of PMR doesn't respond to either. A small number of patients do very well on MTX but by no means all. Sulphasalazine rarely achieves anything.

If you have PMR then stopping pred will result in exactly what you experienced UNLESS the underlying autoimmune disorder that creates the inflammation has burned out and gone into remission - and while a lot of doctors believe some old and poor studies that suggest PMR is gone in 2 years, it is a myth (as Prof Mackie says). If these other drugs worked reliably for PMR they would use them, not pred, but they don't and pred is the mainstay of management of PMR. It may take years to get off pred successfully - and even after a short period on pred, it can take months for adrenal function to settle down. But I will lay odds - your aches and pains were PMR not adrenal insufficiency.

[Thepinkvixta in reply to PMRpro]

I was told the meth would take upwards if 3 months to get in my system...and when I'd tapered and the pains came back they then upped the pred to 20mg and added the sulfazalazine....pred I have tapered (prob too quickly) down again and then it all came back again...hence back up to 15mg for a few days then 10 and now 5mg a day...just been given another 10 weeks worth to last til September when I'm supposed to see the specialist again...still jabbing on a Monday and still popping 4 of the big yellows a day...by the time I see her again I will have been on methotrexate for 10 months and sulfa for 7...if they bring me down on my pred again and the pains come back I don't know what I'm going to do! It will have then been nearly 2 years since this all started...

Before this i was a regular fitclub and gym goer...fit as a fiddle...now I feel old and slow...

Anything more than a short walk wipes me out...its all so draining!

[PMRpro Ambassador in reply to Thepinkvixta]

Tell me about it. Lots of us were.

But what you need is a new rheumy who doesn't have pre-conceived ideas about your management. If you have PMR you will need an ongoing steady dose of pred and NOT a course of 15/10/5mg and stop. That has no role in the management of PMR even if you DO have an inflammatory arthritis alongside it. PMR is a CHRONIC condition, it lasts 2 years if you are lucky - much longer if you aren't. And it seems to last a lot longer when badly managed - and that I would say is the case for you.

Is the current 5mg holding your symptoms? It is the optimal use of pred that is crucial in PMR - and nothing else cuts the mustard. There is very little on your profile so I only know you are in the UK. Where in the UK? Is at least one private consultation an option? How far would you travel?

[Thepinkvixta in reply to PMRpro]

Sorry for the delay in relying PMRPro x I will try and update my profile later...5mg is only just cutting the mustard to be fair...I still ache constantly but at least its not the full blown...

I had the original private consultations near a year ago and diagnosed with PMR as my marker all pointed that way and have since been referred to NHS at QEQM Margate where the rheumatologist has said I am seronegative inflammatory rheumatoid arthritis and being treated as such as I am too young to have PMR (her words) and the latest back on pred is because I am aparantly adrenal fatigued due to pred use...I am due to see her at some point in September...and in the meantime doing as I am told with methoject and sulfasalazine I'm the hope that it will all work or at least not and I can tell them that the change in diagnosis is wrong lol

Everything I read on here just makes sense

...it all seems to apply to how I feel...

Oh and yesterday I rang the nurse (as the consultant isn't available) asking if I should up the pred to cope with the fact I am rotten with covid and she said that sick day rules are not a thing and should carry on as normal...

[PMRpro Ambassador in reply to Thepinkvixta]

What a strange woman (doctor) and another (nurse) - both need some retraining I'd suggest.

She is wrong about age. Prof Mackie in Leeds who has forgotten more about PMR than she appears to ever have learnt says she has several patients in their 40s.

Adrenal "fatigue" is woo - you have been on pred which suppressed adrenal function. That is normal physiology, not adrenal fatigue, and there are right and wrong ways to deal with it.

The Sick Day Rules, developed by endocrinologists in Leeds, and the new steroid card are very definitely "things" and done to compensate for the ignorant like that nurse since so many people were becoming too ill when healthcare professionals didn't know how to deal with them

[Purplecrow in reply to Thepinkvixta]

Sorry about your symptoms…it does sound to me like you are describing garden variety PMR…it also sounds like you have been bombarded with a huge concoction of drugs, and yet nothing cured you … well, I would suspect the answer light lie with regular correct dose of plain ol prednisone. Many of us haven been on Pred for decades, low doses, but nonetheless, pain managed while the PMR engine chugs along back stage. Kind regards, Jerri

[Thepinkvixta in reply to Purplecrow]

My body copes with regular pred...without it and with methotrexate jab and sulfasaline I revert back to full on aches (even after 7 months of taking) says to me its not working yet the consultant still says to carry on!

[Thepinkvixta in reply to Purplecrow]

What is garden variety PMR please?

[Purplecrow in reply to Thepinkvixta]

My description simply refers to PMR without GCA. Also PMR which responds to Prednisone without added methotrexate or other drugs. Kind regards, Jerri

[Thepinkvixta in reply to Purplecrow]

Ah that makes sense thank you x

[sewinggranny]

I was diagnosed with PMR three weeks ago and asked the GP if it could be caused by stress, I care for my 84 year old husband who has cognitive impairment and I am finding it hard going.We had all our vaccinations, both caught Covid at the end of January 2022. It took me longer to recover but I put that down to the fact I have asthma. We had our last booster in March. I started to develop symptoms at the beginning of May and assumed I'd overdone the gardening and that the pain and stiffness would ease within a few days. When the symptoms got steadily worse I went to the GP who said it was classic PMR, had blood tests and was put on steroids. The steroids have helped, the pain has gone but not the stiffness, I am not able to walk as much as before and constantly feel tired. I didn't know there could be a connection with the vaccinations. I will be due a booster in the autumn along with the Flu jab and I'm now concerned that this could have an effect on my symptoms. I'm still learning what my limitations are and that I have to try and pace myself better. My next GP appointment is August so I will be asking whether another booster is worth the risk.

[PMRpro Ambassador in reply to sewinggranny]

It isn't just the covid vaccine - any vaccine, including flu and shingles, can trigger it. But there are people in the forum with PMR who had never had one of them, me for a start. If it hadn't been the jab, it might have been the next thing you met that affects the immune system - a jab, or the illness the jab was to protect you against. An accident, an illness, stress, an environmental trigger. a chemical one, such as a statin or another drug. PMR starts after the immune system goes haywire after a lifetime of little prods and pokes at the immune system. Eventually something is the straw that breaks the camel's back.

I'd rather risk the vaccine than Covid itself. The people who become seriously and even die still are people who have not had a vaccine or who have had a jab a very long time ago and their immunity has waned.

[sewinggranny in reply to PMRpro]

Thank you for your reply and the information. GP didn't really tell me much, said it could last up to two years and just gave me prescriptions for steroids, omeprazole, calcium and there will be something for osteoporosis which will be added shortly. I hadn't heard of PMR before the diagnosis and should have asked more questions.

[DorsetLady PMRGCAuk volunteer in reply to sewinggranny]

Maybe have a read of this - healthunlocked.com/pmrgcauk...

[PMRpro Ambassador in reply to sewinggranny]

"Up to 2 years" is for about a third - it can last longer. I would suggest you add one drug at a time starting with the pred obviously. I'd also ask for a dexascan before starting the osteoporosis drug - you may not need it and the less you take, the better really.

[sewinggranny in reply to PMRpro]

Thank you, I will look into that.

[Purplecrow in reply to sewinggranny]

I’m sorry you have this latest challenge added to your plate. We are fortunate that PMR pain can be managed by a proper dose of prednisone, and you should not be worried about using it. As PMRPro said, the disorder rises in response to the final “straw that breaks the camels back”. You can pick any of the many stressors you mentioned in your post, including the Covid vax, but you are unlikely to pick the exact insult that pushed your immune response over to PMR. This message brings a huge hug for you, and please stay with this forum….the Wise Women here can find answers for you. Kind regards, Jerri

[DorsetLady PMRGCAuk volunteer in reply to sewinggranny]

More likely to be the stress (many of us been there)...and the vaccination was the final straw to an already overloaded immune system.

As for another vaccine, a flare in your PMR is probably better than full blown Covid....but only you can make that decision.

[sewinggranny in reply to DorsetLady]

Thank you. My first thought was stress. The last two years since covid outbreak have been difficult for us and many other families.

[DorsetLady PMRGCAuk volunteer in reply to sewinggranny]

..and looking after hubby, much as you want to it has an effect on you as well (as quite a few of us know only too well).. sure it was a trigger for my GCA many moons ago,

[sewinggranny in reply to DorsetLady]

Thank you. he commented recently that he didn't know what I had to be stressed about! I've taken over responsibility for finances, food shopping, the garden not to mention doing the usual household chores.

[DorsetLady PMRGCAuk volunteer in reply to sewinggranny]

I won’t say what a I think of his comment!

[PMRpro Ambassador in reply to sewinggranny]

Ditto to DL's comment!!

I looked after my husband for nearly 2 years after a fall just before Covid started where he got a spinal fracture. He barely went out of the house except to hospital but he did continue with the finances - though in retrospect I'm not sure that was a good thing given what I have found since he died! I knew years ago that whatever I wanted in retirement it wasn't a garden so at least I didn't have that! My flat is tiny, just 3 rooms, and I just abandoned cleaning and stuff, just did the basics. There was no option for help, not even a cleaner. Even so - it resulted in a major flare which has continued until now. Luckily I have super doctors who appreciate the role of stress - and it does help knowing that.

The worst bit is dealing with UK authorities!!!

[Purplecrow in reply to PMRpro]

Hi Pro, you get the huge bouquet of flowers too! J

[Purplecrow in reply to sewinggranny]

No comment …. I am sending you a huge virtual bouquet of your favorite flowers! You are a wonderful Woman! Aforementioned gentleman is lucky to have you!

[Jigsawlass in reply to DorsetLady]

I agree with stress being a factor...my mum died 2017, my dad a little over a year later , and the following May I was diagnosed with breast cancer . I think my body is saying its had enough !

[DorsetLady PMRGCAuk volunteer in reply to Jigsawlass]

Can only take so much, before something has to give!

[PMRpro Ambassador in reply to Jigsawlass]

OH died at the end of October - I was fine until February and then it went totally pear-shaped. Finally looking up a bit now.

[Amkoffee]

I've had PMR in the past and when I got Covid it came back. I'm 4 weeks out from my first covid symptoms and really struggling still. My rheumatologist thinks it might just be a flare and won't last years like it did before. I'm hoping she is right. She started me on 40mg pred because I also have a lot of inflammation in my lungs still. After five days of that I drop down to 15mg per day. I'm not looking forward to that big drop.