Late diagnoses Male aged 75 in UK

[Supertiger303]

I was diagnosed with PMR after repeatedly telling the Doctor my symptoms which he said was caused by my osteoarthritis which was found over a yera before my major problems started

I became ill after receiving my Covid booster and flu jabs at the same time

I was initially laid low with a fever for 5 days and after this over the next month gradually got pains in both shoulders and my legs began to feel very weak

After another visit to the doctor some 3 months after the jabs I was in such a state that I could not stand up or even pick up a cup by the handle

My wife phoned the surgery and explained how serious it had become and an NHS doctor was sent to my house

After 15 minutes of examination he said I had Polymyalgia

Never been mentioned to me before

Immediately put on Pred steroids and within 8 hours I could at least get out of my bed

I was on 20mg of pred per day and prescribed Cocodamol a very strong painkiller at a dose of 8 per day

Now 4 months on I have only managed to drop to 18mg per day

Not improving very quickly

I have never read in any of the posts of a diagonsis being made so late as mine when I was completely parrallised (not an exaggeration)

Has anyone else been in this situation as it would have been life threatening if not diagnosed when it was

In posts I have read it was never described really as anything but a treatable problem that they really do not no much about

My PMR was definitley caused by the Jabs and of that I am convinced

Anyone have any opinions on this?

[DorsetLady PMRGCAuk volunteer]

Hi

And welcome

The amount of time it took for you to get a diagnosis is not that long unfortunately, many are longer.

You may be convinced the vaccines are to blame, but they were probably the final straw to an already under stressed immune system…if they hadn’t triggered your PMR, it may well have been something else that did.

PMR is not life threatening in the way you mean, but it can certainly be life changing…and it is disappointing you don’t seem to be improving much after a good start, but are you trying to do too much… you can’t you do have a serious illness, and treat it as such. Perhaps a read through this link might help -

healthunlocked.com/pmrgcauk...

Are you still on cocodamol? If so, is that for your osteoarthritis because it will do nothing for your PMR.

There is a lot of information about PMR, but it’s true nobody is really sure what causes it apart from an immune system in disarray - please have a look through the FAQs on here for more info, but come back any time for specific queries….

healthunlocked.com/pmrgcauk...

[Nuff1 in reply to DorsetLady]

Re Cocodamol - in adition to DorsetlLady's advice do bear in mind that it can also cause constipation.

[Supertiger303 in reply to Nuff1]

Only thing that distressed me was getting a face to face appointment with my GP

[Supertiger303 in reply to DorsetLady]

You have replied to me before and seem to know what you are talking aboutWhat would be the effect of stopping my painkillers if as you say they do nothing to treat PMR?

My osteoporosis is only in my right knee at the moment and has got more painful over the last couple of months

I have a doctors appointment next week and am making a list of questions to ask him

I agree with your thinking in as much as I cannot really tell the progress I am making if the pain/discomfort is being masked by painkillers

Hope the above makes sense to you

[DorsetLady PMRGCAuk volunteer in reply to Supertiger303]

Most people find their osteoarthritis pain (and actually most pain whatever it’s source) is masked when on higher doses of Pred, and then as they reduce it resurfaces.

Doesn’t mean the OA goes away, it doesn’t, you just don’t feel the pain. What that dose of Pred is may vary from person to person, and of course how severe the OA pain is.

Steroids control the inflammation (which in turn leads to stiffness/pain) that your underlying illness causes, ordinary painkillers such as cocodamol do not help control that inflammation (pain).

Since you have been on the Pred , have you noticed any difference in your OA pain in your knee?

If the answer is none, then you may still need to take painkillers, if it has improved a little or significantly then you may be able to reduce or stop the cocodamol - at least temporarily.

Your PMR and your OA are two separate issues, and sometimes, especially early days it’s difficult to work out what is what.

Most of us waiting for diagnosis took painkillers (mine took a very long time - and I had GCA not PMR) and found although they may have given a hour or two relief they did not address the inflammation caused by the disease.

Hope that makes sense to you, and please let us know how you get on with doctor. As I said previously I am concerned that your PMR doesn’t seem to be as well controlled as it should be.

Do you keep a diary of symptoms, how you feel, what you can and cannot do etc…that may help you and doctors.

[Supertiger303 in reply to DorsetLady]

Thanks for thatI agree and always felt that the PMR and OA were difficult to separate when trying to judge in any improvement or regression of treatment

[PMRpro Ambassador in reply to Supertiger303]

"My osteoporosis is only in my right knee at the moment and has got more painful over the last couple of months"

Do you mean osteoporosis or osteoarthritis? Osteoporosis itself is not painful - only when it is accompanied by fractures as a result.

I was told I had OA in my knees at a rheumy appointment early in PMR - she waggled my knee and claimed she could "feel it". No imaging of any sort. Thirteen years later it was x-rayed here because of pain - no sign at all of any deterioration due to OA. It was the PMR the first time and it improved after a couple of months of pred.

[Supertiger303 in reply to PMRpro]

Stupid me , Osteoarthritis. So many medical words in my head I got mixed up, Sorry

[PMRpro Ambassador in reply to Supertiger303]

It is a common confusion! But the knee COULD be the PMR if they haven't shown it is definitely OA with imaging. And possibly worth trying Flexiseq which I think has been recommended to you already

[Supertiger303 in reply to DorsetLady]

Hi everyoneLooking on any advice about a drug I have been given for very swollen feet/ankles which is diagnosed as fluid retention due to the Steroids for PMR

FUROSEMIDE IS THE DRUG

Doctor never mentioned any side affects but the warning literature included with it read as a horrific set of side effects

So much so that I am really scared to take them

Anyone got any comments on this drug?

I would be most grateful for any opinions or advice

Thanks for reading this

[PMRpro Ambassador in reply to Supertiger303]

It is a diuretic - to encourage your body to pee out excess fluid. You do need to be careful taking them alongside pred because it can make you lose too many electrolytes (sodium, potassium and so on) and that is what would cause the side effects that are scaring you so much. They list them all so you know what to look for. There is no reason to be scared to death - your doctor obviously thinks you need them and used sensibly they should help the fluid retention.

[Supertiger303 in reply to PMRpro]

Define "sensibly" and "along with preds" please, as only doctor's instructions are "take one per day"

[PMRpro Ambassador in reply to Supertiger303]

That is sensibly - don't take more. And if you have any such symptoms - report them to your doctor.

[Supertiger303 in reply to PMRpro]

I would only take the prescribed dose and of course would report anything to my doctorBut thanks anyway

[PMRpro Ambassador in reply to Supertiger303]

Not everyone does!!!!!

[PMRpro Ambassador]

I doubt it would have been life-threatening - unless it had progressed to GCA which increases the risk of stroke and loss of vision (which isn;t life-threatening but life-changing). I had had PMR symptoms for 5 years by the time I was put on pred - can't even really say I was diagnosed as they all disagreed!

As DL says, the cocodamol is doing nothing for your PMR symptoms - does something less strong deal with the OA?

The development of the PMR may well have been triggered by your jabs - but it is the result of years of what are medically called "insults" to the immune system - but it can be illness, trauma and/or stress which can be physical, emotional or mental (i.e. family, work, hobbies), chemical, environmental etc, which all have an effect on how it works, Eventually a single factor is the straw that breaks the camel's back and it goes haywire and becomes deranged, unable to recognise body as self so it attacks it as a foreign body like invading viruses or bacteria. If it hadn't been the jabs - it could have been the illnesses the jabs were designed to prevent or mitigate. Many say their PMR started after the flu or the shingles jab - others after having the flu or shingles. I. like many others, had never had a flu jab, hadn't had flu for years. Others link it to a bereavement, stress at work, many different events. There is no single cause.

I'm surprised you are still stuck at 18mg after a good start at 20mg - but as DL says, are you now trying to carry on as before PMR? That just doesn't work. Lifestyle adjustments are needed too. And a response that quickly doesn't automatically mean an easy journey - even after 5 years of symptoms, I was a good 70% improved in only 6 hours after my first dose of 15mg. But it took me over 4 years to reliably get below 10mg/day and after 18 years in total I still have PMR symptoms - and no sign of it being something other than the PMR we discuss here. PMR isn't the disease - it is the name given to a set of symptoms due to an underlying disorder and there are several which must be ruled out before plumping for PMR.

[Supertiger303 in reply to PMRpro]

YOU SAY LIFESTYLE ADJUSTMENT NEED TO BE MADE BUT WHAT ARE THEY EXACTLY?

[PMRpro Ambassador in reply to Supertiger303]

Simply accepting that you can't do things you did before - how much less you can do I can't tell you, you have to identify what your limits are, Do too much and PMR will come back to bite you next day. I don't know what your lifestyle was - there is no exact rule. I don't have a crystal ball but there are loads of posts about what people can't do any more and discussion about adjustment. Start a thread, tell us what you were doing - like riding a bike up and down mountains, gardening, whatever. Someone will have been there and tell you how they coped.

[jinasc]

PMRpro and Dorset Lady, have covered it all.

Take a look at Flexiseq for your osteo - I have used it since ARC research launched it on the market. Works like WD40 and is bio-mechanical, not a drug in any shape of form p so no side effect at all.

[Seacat30]

Mine started 5 days after the 1st Covid vaccine. I know other people who have had similar experiences.

[DorsetLady PMRGCAuk volunteer]

Further to jinasc comments -flexiseq.com

[piglette]

PMR got triggered by the Covid jab for quite a lot of people, stress, flu jab etc etc can also trigger it. My GP kept saying I had a virus. I remember lying in bed and it hurt to move. I had trouble eating as it was so painful to lift my arm to my mouth. In the end I went to see a rheumatologist privately who diagnosed PMR in about five seconds.

[Supertiger303 in reply to piglette]

This was my situation also all though with supposed Artritis

[Supertiger303 in reply to piglette]

Told by a Doctor aquaintence that PMR was one of the first things doctors were taught

[DorsetLady PMRGCAuk volunteer in reply to Supertiger303]

For some it seems the first they forget as well ……

[Supertiger303 in reply to DorsetLady]

So am I correct?

[piglette in reply to Supertiger303]

I have an orthopaedic surgeon friend who muddles up fibromyalgia and polymyalgia. I am not sure he could tell you the symptoms of either.

[PMRpro Ambassador in reply to Supertiger303]

"So am I correct?

What about?

[Supertiger303 in reply to PMRpro]

About PMR being one of the first conditions they are taught about

[PMRpro Ambassador in reply to Supertiger303]

I doubt it somehow - and if it is they don't appear to have been listening.

[DorsetLady PMRGCAuk volunteer in reply to Supertiger303]

Correct about what?

[PMRpro Ambassador in reply to Supertiger303]

Doesn't say a lot about their learning skills then!!!! Or their memories ...

[Koalajane]

My diagnosis took over 3 months whilst my GP ruled other things out so not a long time for diagnosis. Unfortunately there is no test for PMR

[Supertiger303]

It is a long time when you end up paralysed

[Nextoneplease in reply to Supertiger303]

Indeed it is, Supertiger!

I had PMR symptoms for nearly a year before diagnosis, but they came and went somewhat. I was advised by my GP to use ibuprofen and to exercise less! (I wasn’t doing much anyway). Eventually I was in much the state you describe, really excruciating pain and barely able to move, such that my husband called an ambulance. A locum GP allocated through NHS 111 put me on prednisolone, which took almost three weeks to have much effect. Touch wood, I’m much better now, fifteen months on, but the big lesson I’ve had to learn is that pred doesn’t cure the illness,it simply helps to manage it. I have to do my part by pacing myself, resting and not trying to push through pain. Doesn’t come naturally, but has to be done.

I wish you well. The pred should eventually help, and you will find your own way of managing things.

Take care and all the best x

[Supertiger303]

OA confirmed with xray 18 mths ago

[PMRpro Ambassador in reply to Supertiger303]

Fair enough

[Sharitone]

I was also told by GP to take 8x co codamol per day. Didn't help at all!

[PMRpro Ambassador in reply to Sharitone]

But they won't accept a low dose of pred. That does work ...