Update on where I am on the great PMR journey

[Purplegloss]

I have had PMR for 4 years now, and have just offloaded my Rheumy as she works too closely to guidelines(1 size fits all) only had phone calls the last two sessions anyway, and by doing what she said I took a whole year to get back to 5mg after she put me down to 4mg causing a flare. I had to give a reason for cancelling next months' phone call, and said it was because I did not feel I was getting any benefit from having the calls. Today having got back to 5mg a few weeks ago I started down again to 4.5mg via the slow method, and hope it works this time. I have also been allocated a new GP as my other one, who was very good has retired. I never use the online telephone system for the surgery as I have got something better to do with my life, so I wrote him quite a detailed letter of my journey so far, and if he was not up to speed about Polymyalgia before, he is now, with all the knowledge I put in my letter, mostly gained from this site of course plus my own experiences on the way. I was quite impressed to get a letter in reply from him written the very next day thanking me for my excellent letter, and saying that he had noted my concerns about what can happen in some cases when you go lower than 5mg. I used to have 3monthly checks with my old GP and regular blood tests, but haven't seen a GP now for about 2 years. Anyway I have just received another letter from him this week sending a red card, and a whole page of things I should look out for if I get a problem. Sounds like he might be on the ball now, but we may well never meet face to face if things go on as they are.

[123-go]

I am most impressed by your tenacity, Purplegloss. Well done!

[Nextoneplease]

I’m impressed too Purplegloss 😊

I think you may have made a great start on establishing a good working relationship with your new GP 👍x

[jinasc]

You have taken control of your auto-immune illness and now are educating a GP. Well done.

xx

[piglette]

I have dumped four rheumies over my PMR years. The first one who was private and in my opinion was using me as a cash cow put up quite a fight and kept phoning me. I suppose he did diagnose PMR which my GP failed to do. He then kept getting me to come back to him every week he just took my BP and dictated a letter to my GP. I did try writing to my GP once and included a question, (technique to get an answer, ) I still have not had a reply two years later and she has left anyway.

[Purplegloss]

I often write to people to try and get things sorted out, and recently I wrote to my MP to ask what the latest was on the blood test bottle shortage, as I had been refused one for an abnormal Vitamin D reading, which I hoped had been corrected. He checked it out, and apparently the shortage is not with bottles per se, but it is a shortage of the anticoagulant chemical used in the bottles. Guess there is still a shortage as a family member has just been refused a test as well.

[Rosbud in reply to Purplegloss]

Had my blood test yesterday and the nurse actually told me the shortage was over x

[SheffieldJane]

Wow! That is impressive, of you both.

[123mossie]

How refreshing to hear that. Hang on to that gp!

[mgrogers99]

I like your term of offloading you rheumatologist! I am planning to do the same thing. Mine never agrees with me. I am tapering ...she thinks I am on 20mg but I am on 17.5mg and soon it will be 15mg. She has never examined me and never asks about pain. I could go on....she is my 2nd rheumatologist and there are not many in my medical group. I told my primary doctor and will see her tomorrow. I have enough prednisone to get through the tapering. My hope is that the tapering is successful and I won' t need steroids or maybe a small dose my primary will prescribe. My primary doctor does not want to take the roll of a specialist but is willing to talk to me. I feel like I am having a power struggle with the rheumatologist....is that what has happened to some of you?

[calicojoy41 in reply to mgrogers99]

I PLAN ON DOING THE SAME. I KNOW MY FAMILY DOCTOR WILL TAKE CARE OF ME!

[Viv54]

Good for you !! i have not got much faith in Rhuemys either ! By the time you see them , they dont seem to have a clue whats going on ! My whole illness has been managed so badly pushed back and forth ! I have an app with an Endo almost 3 years down the line , if i dont get joy from him, im on my own sorting this dreadful illness out , i am anyway really ! My Drs is kind but its been to long in between apps , they have all lost the point !

[tangocharlie in reply to Viv54]

You're never alone sorting things out, you have this forum and knowledgable people to help and support you

[Viv54 in reply to tangocharlie]

Thanks, I always know I can turn to this site ! It's done more from me than all the professionals put together !😊

[TheMoaningViolet]

My rheumatologist is very nice, responsive and caring, but she askes me every time I talk to her on the phone why I stopped AA (which I did over a year ago which is when I told her about it) and tells me to reduce 1mg every 4 weeks. She seems to have forgotten that even when I was on higher doses, she told me to alternate doses for a week and then stay on the lower dose for 4 weeks. I have told her all this a few times, and now I just don't worry about it anymore and rely on my sensible GP to keep issuing me with prescriptions. I have been reducing steadily and am now more or less on 2.5mg, so I think I am doing very well. Pandemic has not been helpful to the continuity of care, unfortunately.