4 months check up....a joke really !
Posted , 12 users are following.
I started on this journey last July....
I had all the preliminary tests and then saw Consultant Rheumy for the results - he was an arrogant SoB - I went armed with a wealth of questions and some thoughts of my own after his colleague mentioned it could be PMR and he questioned why I bothered to go and see him if I had all the answers! He was not impressed today when I pulled him up on his copy letter to my GP that stated the Prednisolone dosage - 15, 12.5,10mg per month and then reduce TO one mg a month, instead of BY one mg a month. Stopping Pred for 7 days made me very ill and involved the emergency services but am sort of back on track again now...he intimated I should have known I couldn't just stop them.....plus he never said I would be on them for at least a year but his letter should have spelled it out a little better by adding 'reduce by 1mg a month, i.e. to 9mg,8mg,7mg etc for those who didn't have their lateral thinking head on, - then if his secretary made a typo error, it would have been clearer...yes, he blamed his secretary but I reminded him he signed it albeit electronically....no wonder he doesn't like me much ! Ha !
His unsympathetic offerings today at my four months check up were - up the anti to 12.5mg after my blip and start the descent again or reduce completely by 1 mg every week if I want to come off them quickly...no what if's of but's, he couldn't be bothered and made an appointment for Feb with the parting shot '....if you have weaned yourself off them in that time just cancel the appointment ' !
Short and not so sweet and left me none the wiser - apart from my CRP and ESR levels have reduced significantly but my Vit D is very low, requiring a heavy dose for 6 weeks to catch up, followed by a maintenance dose but my GP was already on that.
No assistance with the weight gain - almost 2 stone heavier - no help with the insomnia or any other side effects...more or less put up and shut up or get off it....ho hum....what is a girl to do...
I so appreciate this forum for a bit of a rant....thanks for listening folks.
0 likes, 28 replies
ptolemy missmagwumps
Posted
What an amazingly arrogant guy as you say. I am not sure I understand why you stopped the Pred? Was that due to the letter? If so he should be shot. Just telling you to reduce quickly if you want to come off them is such rubbish, the reason you take them is to suppress pain not to stop taking them because you do not want them, none of us want them. Particularly as there is no alternative. Do you need a rheumy? Could you just go to your GP?
missmagwumps ptolemy
Posted
Yes - his letter said reduce TO 1mg a month instead of BY 1 mg a month - yesterday he blamed the typo on his secretary but he signed the letter electronically so should have looked at it. Personally, I think he should have qualified the dose in the letter with an ,i,e, from 10mg to 9 to 8...I don't mind people spelling things out to me in idiot fashion...we don't always have our lateral thinking head on - had he done that I would have realised it was possibly a typo but even so I checked with my doctor and she misunderstood my question and said reduce 1 a month and not one a week - she assumed I realised I wasn't to stop at all and was just asking if the 1mg reduction was weekly or monthy! So was doomed to fail....ha.
I was sent to the rheumatologist by my GP a she didn't understand what was going on with my bod.....they were stumped after my spine surgery and knee replacement as they had been saying it was probably a sort of referred pain due to those conditions but then didn't have that crutch anymore as both procedures were a success and reduced their own specific pains after a recovery period....but the body/muscle aches/fatigue and pains were still there......ho hum....x
ptolemy missmagwumps
Posted
Words just fail me. We wonder why the most awful mistakes are made in hospitals. It is not lack of medical knowledge it is just sheer ineptitude!
lynda62707 missmagwumps
Posted
hi missmagwumps...so sorry in being so late to this 'party'. Still not getting timely notifications on this new format! once again, I Stumbled upon this by accident!
I completely concur with all the others and their responses. your doctor should be 'hung', (or at the very least, ashamed of himself!) sadly, given how he treated you, that probably won't ever happen!
sending you hugs and good thoughts... 😍😘🌟💕
missmagwumps
Posted
thank you everyone for your replies -i am not receiving email notifications but just thought id look before going to bed...so pleased I did and grateful to see people had responded...was beginning to feeling a little bit dejected..... will sleep easier (hopefully) knowing I have such support from you all....bless you all and sleep well! xxx Will let you know what i decide or how i progress......ZZZZZzzzz x
lynda62707 missmagwumps
Posted
sweet dreams missmagwumps!
I'm so INCREDIBLY frustrated with this new format. Just when I believe everything's straightened out....Bamm, everything's all screwed up again!! I too have been feeling somewhat abandoned in as much as I'm not getting hardly any notifications. Then all of a sudden I'll 'Stumble' across something quite by accident....Ughhh, are they ever gonna have this thing FIXED??
In any case, you're NOT alone...we just need to keep finding one another!!💆#headache!
MariGrace lynda62707
Posted
Not sure if this will help or is related to others, but I didn't get posts for at least 9 days. It took going into the site, my information, answering questions ( am I a medical professional? No.)
After resetting everything, it is working better.
Hope this helps someone.
This is such a valuable tool. It feels like a loss when it isn't available.
MariGrace
lynda62707 MariGrace
Posted
no kidding MariGrace...it DOES feel like a loss when this isn't working right...ESPECIALLY now when I'm in Such a Funk and just wanting to hear from someone about ANYTHING!
once again, I "Stumbled" across your post....ughhh😣⚡👎
ClaireJG missmagwumps
Posted
We're all on your side!
Take care
Anhaga lynda62707
Posted
I don't know why you don't just come on the page and look for notifications. Do they not show up on your device? On my laptop there is a link to notifications in the upper right hand corner I don't like to get email notifications because they fill up my in box.
EileenH missmagwumps
Posted
You are in the UK (I assume being on prednisolone) so go to the PALS (Patient Liaison...) and make a formal complaint. Discuss things with your GP and decide if it is worth you being referred to a further rheumatologist and whether you are going to accept this is PMR and work on that basis or seek further investigations. I think from what you have said about symptoms and what I think your response to pred was it doesn't seem unreasonable to say it probably IS PMR but everything else does need to be ruled out for comfort.
missmagwumps
Posted
Just to follow up on this post - I received a copy letter sent to my GP after the appointment I told you about and in it the rheumy states "For some reason she stopped taking the steroids....." He knows exactly why I stopped - due to the wording in his letter - for which he blamed his secretary.....yet he signed it electronically!
As some of you suggest - I have sent an official letter of complaint now.
Thanks everyone for your support...x