What our doctors don't/won't tell us about PMR

[jarn]

Trying to clarify a few things from my initial intro to PMR/GCA. After diagnosis and the high dosage of Pred., I initially blamed the Prednisone for what my body was experiencing: loss of muscle control/pain in neck/loss of balance/fatigue like never before. Now, 2 yrs later, reminded that it was PMR all along. No, none of the doctors advised that this was attributed to PMR. Only by reading all the accounts by people on this blog, did the truth appear. Sad business but reassuring that only fellow sufferers can see us through. Not all of us experience the same effects, but each reading provides more insight. Am grateful to read all of you. And also grateful that the sight of one eye ONLY was lost; being careful to keep the other eye healthy. Thanks to our panel experts who put it out here, straight. We must persevere. As many of you have stated, our medics just don't know enough about this disease; until they are afflicted with it. In the meantime, keep sharing!

[bethm1129]

Well said! I second the gratefulness for the sharing of information.

[SheffieldJane]

It’s the only thing that holds me together sometimes. I am glad you found us!

[DorsetLady PMRGCAuk volunteer]

Don’t think most doctors have any idea of what happens with PMR, even the specialists - and many GPs have scant knowledge of the disease, even less of GCA.

If you haven’t read before, you might like to including second post on monocular vision (but expect you know most of it) - and yes, looking after remaining eye is paramount -

healthunlocked.com/pmrgcauk...

[jarn in reply to DorsetLady]

Yes, thanks. Did read earlier and appreciate this reminder. Concur with all that you included (except for OH) and often feel very embarrassed when I "blind side" somebody when shopping! Never see them creeping up on my blind side! As you say, both eyeballs appear to be working but only we know better. LOL Would put a tick mark alongside each of your comments and still have to concentrate when pouring. Daughter asked me to light b'day candles and had to be taken away from me,as I was melting the icing...........oops. Thank you for that piece and keep up the good work

[DorsetLady PMRGCAuk volunteer in reply to jarn]

Like the candles/icing scenario 🤣😂…life’s never boring !!

[PMRpro Ambassador]

They don't have it, everyone is different and they are taught that once the patient is on pred that is job done, they will be back to normal and able to taper to zero after a couple of years. What doctors learn at a particular stage of training sticks with them and it is very difficult to change their minds.

And yes - all you can do is hang on tight to the positive bits because if you think hard enough, there is always something.

[jinasc in reply to PMRpro]

Remember mate that PMR GCA uk North East Support) closed down £10,000 was passed on to PMR GCA UK the national charity for a project and it is ring-fenced.

This project was ready to start when Covid intervened.

This is a small extract from the project for education and training to see if it would make a difference in raising the profile and help both GP's and Patients.

"By the end of 2 years, we would like all areas in the North east and Cumbria to have their own fast-track pathways for GCA & PMR, better knowledge & confidence among GPs in managing these conditions and more importantly avoid patients having to travel between districts for better care."

I am hanging on to the hope, that it will , when Covid and backlog settle down a bit start up. the money waiting to be used by the

I know how lucky I was that my GP had come across a patient 30 years before me who had GCA and I was the next one. So my practice had that knowledge of the one GP which was quickly passed on to the rest of the members of the practice.

In the meantime the charity is still run by around 4 paid employees and the rest done by volunteers, it would help if people could consider joining the charity or making a one off donation, however small. I am well aware that times are hard at present. But putting what I call 'shrapnel' in a jar soon mounts up - every penny counts.

For members for this thread on HU, take a look at my profile it will help you understand where I am coming from.

[jarn in reply to jinasc]

So how do we contribute from outside the country? Don't do Amazon

[Koalajane]

Indeed every penny does count which is why I am a member and also use Amazon smile to donate to the charity

[jinasc in reply to Koalajane]

Thank you.

[Koalajane]

Thank you for all you have done for the charity, a charity I am very pleased to support