PMRGCAuk

Different doctor with different approach well worth seeing

I am pleased to report that changing the doctor that I have been seeing in a group practice has been worthwhile, although the referral process will probabaly mean months of waiting.

After a year of appointments with the doctor who first confirmed my PMR (and started me on 50mg of prednisolone!! ) and who then proceeded to put me under constant pressure to taper until I had an almost inevitable flare in January, I decided to see one of the other doctors in the group.

Not only has he referred me to a Rheumatologist but today he has referred me for an MRI to see if my face and jaw pain are caused by GCA or LVV or result from TMJ (temperomandibular joint) problems. He also agreed that I should manage my PMR pains with the amount of pred that I felt worked!!

OH THE JOY OF BEING LISTENED TO!

Has anyone else had an MRI of the head and neck to look for the cause of facial pain? I already know that I have damage to my neck at C5/C6 from a whiplash injury but the pred (and fentanyl) have pretty much reduced all the other body pains over the past fourteen months. I notice pain is creeping back in my thumbs and hands as I reduce the dose and I am also noticing tingling in my finger tips, all of which was investigated five years ago by Spinal consultants and found to be of no significance. Now I wonder if they were early signs of PMR which was aggravated by the STRESS of being ignored!

Grateful for any input on this, Chrissie

13 Replies
oldestnewest

Hi Chrissie,

So pleased you've finally got to see a GP who is listening to you, and giving you the authority to manage your own pain - wish others were so trusting! I was lucky in that both of mine did, but it must be so frustrating for those who aren't so lucky.

Sorry can't help you with MRI and facial pain, but do agree that the tingling in your fingertips, hands etc could be PMR related....then and now!

Please keep us updated on progress.

1 like
Reply

What dose are you at now Chrissie? It is always worth shopping around a group practice. I didn't - I should have done so far sooner.

Reply

I've been trying to taper to 8.5 mg but feeling more pain so the doctor said I should stick to whatever worked for me. In January he wanted me to taper by 1mg a month after my flare so I feel it's quite a development that he respects the fact that PMR and steroid reduction don't necessarily conform to doctors plans.

Reply

Onwards and upwards (or downwards...) - the message is getting through then!

Reply

Hi Chrissie, I’m so glad that you have a doctor that you have faith in after all you’ve been through. I haven’t had an MRI of the neck and face but would accept one for sure. The cold weather has brought stiff painful fingers with it for me. I hope it’s temporary, I cannot thread a needle.

Good luck!

Reply

Hi Chrissie,

I refuse to see the original GP who put me on pred and a PPI without considering my bone health. (8 months later a DEXA scan showed I have osteoporosis.) Also, when I mentioned the BSR guidelines for the management of PMR, because he wanted me on 15mg pred and then 13mg for 4 times as long as recommended in the guidelines, he said "If you want to know about PMR read the BMJ"! (BMJ = British Medical Journal)

Needless to say, I now see Dr A N Other, who listens to me, approves the DSNS taper, arranged the DEXA scan, referred me to a rheumatologist and has the best 'bedside' manner ever. He gave me his email address and asks me to let him know how I get on at my appointments with the rheumy before he receives her letters!

Both in the same practice and all on the NHS!

I'm sorry I can't help with the facial pain, but I do get tremors and tingling from time to time from my temple down to my chin. I'll mention it to the rheumy at my appointment tomorrow.

Let us know how you get on and take care. x

Me: PMR 22 months, 1 flare at 12 months, now tapering to 5mg

2 likes
Reply

My first doctor wasn't quite as rude but he was very dismissive of the forum and the advice I was getting from other sources, like Professor Dasghupta's and Kate Gilbert's books.its very disheartening not to mention damaging to your health to be treated in such a cavalier manner!

Good Luck at your Rheumatologist appointment, let us know how it goes.

Chrissie

1 like
Reply

I wonder. are they as rude about cancer support charities?

1 like
Reply

Rheumatologist is unwell and appointment is to be re-scheduled. I'll post an update of my graphs after I've seen her.

Reply

Hi Rugger, I read the BMJ every week and as far as I am aware there has not been an article on PMR for two years or so. I just wish there were more!

Reply

Hi piglette, that's about as long as I've been diagnosed. I'd not seen him before and he wasn't to know that I knew what this thing called the BMJ was! I did know, as I worked in the NHS, but he didn't know that.

I'm sure there have been some interesting articles in the last 2 years, but as you say, not about PMR. No wonder he didn't give me the care I needed, if that's his reading matter - and he's the practice 'Musculoskeletal expert'.....!

Reply

My experience of musckuloskeletal experts has not be any recommendation. Just saying!!!!

1 like
Reply

There was an article at come point. All one of it - and it wasn't bad. But on the other hand - it wasn't outstanding either! I wonder what it is makes doctors think they know more about PMR and living with it than they do?

1 like
Reply

You may also like...