Todays appointment with Rhuematologist: Appointment... - PMRGCAuk

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Todays appointment with Rhuematologist

Theziggy profile image
23 Replies

Appointment with rheumatologist today. Not the same one I had seen on last two occasions. I started ny saying that though I had been initially diagnosed with polymyalgia rheumatica I felt my condition was more like palindromic rheumatism - which he ignored.

When he heard that I was still on 15 mg steroids after a bad flare just before Christmas he went ballistic. Much too high a dose he said, go down to 10mg tomorrow and then reduce by 1mg per month.

He them wrote a lengthy latter to my GP - probably accusing him of overprescribing steroids and prescribed a once a week bone strengthening tablet.

He then got me to have quite a bit of blood tests taken too.

To say I am not a happy bunny is quite an under-statement

EXTRA:- I am typing this whilst I can. Although the Rheumy told me to go straight to 10mg from 15mg, I just dropped to 12.5mg starting Wednesday 09th Jan.

So this morning I woke up about 5.30 absolutely freezing and went to the toilet - by the time I got there my body was shivering all over. I brought another blanket to lay on the duvet and turned on the heating, got back to bed and warmed up a wee bit.

So I got up and when getting dressed noticed mild pain on the outer part of my hands - the sides with the little finger. Oh oh I though, this is typical of the way flares start for me, a mild pain which grows to incapacitating pain and then returns to a mild pain again - when it may move to another part of my body.

So I drove to town for supplies - cause if the pain grows I will be unable to drive. Bought what I went for and noticed the pain increased whilst using the handbrake and gears. Got home and changed into elasticated trousers and slippers (just in case).

So sitting here typing and hoping it goes away. Still feeling feverish. Will continue this later ................................

Later - the pains in the side of the hand increased a wee bit and I waited for the flare and then the pain subsided. I did get aching dull pain in places where I flare - backs of hands, thumb pads, groin, shoulder, knees - but this was just minor pain, certainly not incapacitating. So there was I in my elasticated waisted trousers and slippers all ready for the flare and it didn't materialise,

This morning the backs of my hands and my groin are a bit niggly.

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Theziggy
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23 Replies
SheffieldJane profile image
SheffieldJane

Argh! That flies in the face of everything I thought I knew. Does he have any suggestions on what to do about the pain? I kind of wish it on him for an afternoon. Then we’d see. New doctor?

Theziggy profile image
Theziggy in reply to SheffieldJane

Yip a new doctor (one I hadn't seen before) - all he was interested in was getting me of steroids ASAP - no questions about pain, flares, no interest in whether it was palindromic or polymyalgia.

piglette profile image
piglette in reply to Theziggy

Some doctors never cease to amaze me.

PMRpro profile image
PMRproAmbassador in reply to piglette

Not sure amaze is the word I'd use...

Theziggy profile image
Theziggy in reply to PMRpro

Well needless to say I didn't drop to 10 mg - I have gone down to 12.5 mg. But don't know if my GP will prescribe me enough to start a DSNS from 12.5 especially since the Rheumatologist wrote my GP quite a long letter which he sealed in an envelope so I couldn't see what it said.

Will my GP receive a copy of my blood tests? I am assuming he will.

PMRpro profile image
PMRproAmbassador in reply to Theziggy

You have the letter? Got a kettle? I never assume anything anymore...

Theziggy profile image
Theziggy in reply to PMRpro

No, I don't have the letter, I had the kettle thought after I left it in to my GP

PMRpro profile image
PMRproAmbassador in reply to Theziggy

SoI would be seeking an early appt to find out what it says - or demanding my own copy.

Theziggy profile image
Theziggy in reply to PMRpro

\i will have to make an early appointment cause when I phone to order my prescription I have a feeling that my steroids will be curtailed

PMRpro profile image
PMRproAmbassador in reply to Theziggy

How long have you been on them?

karools16 profile image
karools16 in reply to Theziggy

Open it. It's about you after all.If I don't get a copy from a hospital consultant, I ask my dr for a copy.

PMRpro profile image
PMRproAmbassador

Noooo - I wouldn't be either. It will be interesting to see the blood results - if you ever do.

Theziggy profile image
Theziggy in reply to PMRpro

I doubt whether I will see those results.

PMRpro profile image
PMRproAmbassador in reply to Theziggy

Me neither - but they are yours and you are entitled to...

piglette profile image
piglette in reply to Theziggy

You are entitled to a copy of your blood test results. I always ask for mine. I now have a massive file!

Laurapc profile image
Laurapc

To go from 15 to 10 in one go is probably a recipe for disaster - I wouldn't do it. I saw my Rheumatologist today and she apologised for not picking up on my PMR sooner. But because I have RA she said the primary disease is always what doctors focus on. Fair enough I suppose but I went through absolute agony. I slowly went into remission just before Christmas and I am delighted to say I am pain free. I also hope it lasts! So I can now start the very slow taper. I said 1mg a month and she said the guidelines are no more than 1mg a month.

alvertta profile image
alvertta

Yikes. Why does a professional go ballistic? Bad practice.

Longtimer profile image
Longtimer in reply to alvertta

That's the trouble...too much bad practice!.,.....

Jackoh profile image
Jackoh

I’m not surprised you’re not a happy bunny!! How annoying! I think it is the arrogance that gets me and not the idea that patient and medical professional work together.

Dump the dog

Daisychain12 profile image
Daisychain12 in reply to

Haha I love that Luigismumxxxxx

Theziggy profile image
Theziggy in reply to

Wish I could.

Sergeant Major charmer strikes again!! ..Ahhh!

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