Rhumy appointment just left me gob smacked

[mad-country-lover]

I was not looking forward to the appointment an had equipped my self with all sorts of stats and questions in anticipation for her something else she wanted to discuss face to face ....... .

She asked me how I was, as when I last spoke to her over the phone back in May after stopping the pred's a second time for this new prescription coming in the post , I told he if I had a large box of Tramadol one side of me and a Vet offering euthanasia the other, I would at this moment in time chose the vet .that's when she said go strait back on to 20 mg pred.

I was gob smacked ( with the something else bit yesterday)

She apologised for making a mistake ....... even though she confirmed after reading the PET Scan that I had PMR and there is a lot of inflammation, she received my blood test results a couple of days later, just looked at the inflammation levels that read 13.2 and thought she would try controlling my PMR with just pain killers ????????.

She had not looked back at my previous blood results until I mentioned euthanasia over the phone. If I remember correctly inflammation levels were around the 147 mark

So she is really sorry and apologised again for her mistake ?????

I said that had cost me another 2 months of agony plus resorting to Prozac .

BUT if I now start following her reduction of 2 1/2 mg preds every 3 weeks , even though the last flair up is still in my legs ?????

I will be fit and well by the end of the year.

I did mention the slow slow dead slow , but she clearly was not interested and said it would not make any difference to the taper , I was to tired to argue with her.

But if I said lets have a vote on which taper plan I will be doing ( when the flair has gone)

Her magic one to be fit and well at the end of the year

or the slow slow dead slow taper

I think I know which one the votes would be 100% for .

again I will say god knows where I would be with out this group , perhaps in the Que for the Vets .

Take care

thank you all for your support help and information xx

[PMRpro Ambassador]

"I will be fit and well by the end of the year." - she thinks does she?

But she is learning - we'll work on it!!

[scats in reply to PMRpro]

Yes but MCL shouldn't need to be the one to educate her!

[jinasc in reply to scats]

MCL is in the best place to educate her.................strong and confident and with a sense of humour.

Nothing better than a patient who knows what it is to have PMR.

Is that 'pie in the sky thinking'? Not really I have come across people with PMR and/or GCA who have managed to educate both their GPs and their Consultants.

So it can be done and is continuing to be done by patients as the following extract which I quote from a Consultants letter:

"Ten years ago on dealing with people who have Polymyalgia Rheumatica and Giant Cell Arteritis, I was a naive, enthusiastic, know-it-all young rheumatolgist then.

I then realised that most of what we learnt in medicine came from patients more than a text book, so we would always value the importance of the work you have done in teaching myself, my colleagues, students and your fellow patients".

[scats in reply to jinasc]

Good point.

Such a shame that your healer should put you through 2 months of unnecessary pain though.

I think all of us here are doing our best to educate when we can.

[mad-country-lover in reply to jinasc]

Hi jinasc

I will be managing my PMR myself but do intended to keep my next appointment with her and use it as a work shop for her x

[mad-country-lover in reply to PMRpro]

My next appointment is in November with Mrs head rhumatologiest , I should be in a far better frame of mind by then even though she IS an old dragon and one would think she has had many patients who don't miraculous recover within 18 months ....I will have a go at educating her.

Take care and thank you for being there

Xxl

[Hidden]

Take the pluses, you found a way to make her put you first. I can't imagine what it's been like having this non-treatment and her pushing you full of drugs that can make you feel squiffy, especially if not being any use for your ailments.

So, get that pred in and hopefully start to feel better. Follow first drop and if it doesn't work, then straight on phone. Suggest smaller drop this time may work. It's going to be a pain but you wear her down and not her wear your down!?😁💜

[mad-country-lover in reply to Hidden]

Hi poopadoop

I had gone through a fast reduction for A PET scan that was 100 * PMR told to go straight back to 20mg pred .3 days on them was when I got the phone call to stop them NOW as wonder prescription was in the post .I dropped back to 5 mg . prescription arrived a list of pain killers .I hit theatres roof and went back on the preds may 15th ,due to yo yoing I still have the flair in the trunks of my legs. I am doing it our way and will be telling the head Rhumy why when I see her in November oo la la

The French just don't question the medics they just say yes , I'm not French x

[PMRpro Ambassador in reply to mad-country-lover]

It is much the same here I think. And I have had at least 3 doctors who have commented at the end of an appointment how nice it is to have a patient with whom they can talk and discuss what to do. The good ones here like it - I've had words with a couple of the baby ward staff. One told me I didn't need a pacemaker ID as it was all on the hospital computer!! At the average foreign airport security too I asked?

[mad-country-lover in reply to PMRpro]

I met all the interns when I was in hospital back in may... Using the knowledge I have gained from this group enabled me to question them , which they all made clear was not appreciated..... Could be why they sent me home to reduce to 5 mg preds on my own oo la la take care x

[PMRpro Ambassador in reply to mad-country-lover]

I did also make sure that the senior staff knew about such cavalier get-outs!!!

[piglette]

I am so impressed with these doctors who have this crystal ball that tells them exactly when we will be fit and well again. Perhaps they could run the country or the world even with that ability.

[mad-country-lover in reply to piglette]

Not this one piglette she looked 16 years old and her boss is an old dragon 🐲

[piglette in reply to mad-country-lover]

Perhaps he boss is training her to become a clairvoyant!

[mad-country-lover in reply to piglette]

That's given me an idea for my November appointment. I may just take one with me x

[SheffieldJane]

Oh dear! I have been almost completely guided by the knowledgeable souls on her and have had a relatively smooth ride.

[whitefishbay]

Too bad she can’t get PMR. Just to know it takes longer than a year in most cases.

[mad-country-lover in reply to whitefishbay]

The head consultant is a spot over 60 I know .... You would think she has that sort of experience. I really don't know why they tell us what they do and make us feel like it's just a very manageable blip .go past that and they all make you feel that perhaps it's in your head .I did say in another post half of them need a week in the land of PMR with a packet of paracetamol before they will ever understand x