Hi please can anyone help. I have PMR and GCA diagnosed July 2020, started on 40mg prednisolone. Was encouraged to get down quickly (approximately 6 weeks) that didn't work had a terrible flare up and luckily found you lovely people. Since then I have very slowly reduced to 15mg daily (I got to 12 but had covid July 2021) I upped it slightly and have been fairly stable. Doctor and consultant have never seen me but keep telling me off and saying I should be off pred and that I haven't got PMR as my last blood test markers were in the range. I said that's because the steroids are doing the job. Last week consultant said to reduce to 10mg, I have tried it but am in pain, aching muscles and joints, feel like low grade flu. I rang the rheumy helpline and was advised to stick at 10mg until 10th December my first face to face with consultant. She is also rude and unkind, I feel upset, stressed and confused. Please help as I have done well listening to good advice on here.
Consultant : Hi please can anyone help. I have PMR... - PMRGCAuk
Consultant
I'm sorry and angry to read this, but its not unusual.......when you see the Rheumatologist ask as many questions as you can, like what is wrong with me if it's not PMR, emphasize your pain, fatigue etc since lowering... Also let her know what you know and are right about the readings while on pred.....How did you get diagnosed without seeing anyone, and now get told to lower...sh ocking..
If you get nowhere change GP or Rheumie if p ossible.....
Others will be along to advise....
Keep us posted, good luck....
New consultant required methinks, doesn’t seem to have much idea about GCA which is worrying. Can forgive GP - just about - many don’t know much about PMR let alone GCA, but Rheumy shoukd know better.
My first question to Rheumy would be same as Longtimer ’s what have I got if not PMR/GCA, followed swiftly by statement - if I lose sight through mismanaged GCA, I shall hold you personally responsible.
As you can tell, I’m angry as well!
Do you have someone who can attend with you, and say how upset you are about treatment.
Where in the UK are you? Who diagnosed GCA? Have you really not seen a specialist since the dx of GCA?
And I would make a complaint about the consultant's manner.
Hi, I have had two telephone consultations with the consultant. There should have been three butthe secretary rang me to ask if I'm okay. I was diagnosed after blood tests, a telephone consultation and also they looked at previous blood tests for the year before and they were also high (tested for another condition) but they had not done anything about the first results. I live near Bury, Greater Manchester am under the Pennine Trust. I also asked her about what happens with adrenals and further reduction she wouldn't answer.
Not good enough -might be worth contacting the PALS at local hospital and explain the situation asking for their assistance.
Bibberty - found this - might be with looking at -
I am appalled that a diagnosis of GCA was made over the phone - either way. An agreement between patient and secretary that you are"OK" is not acceptable, Would she do that for a heart attack patient? I have to say, I have heard some pretty hairy stories from Manchester but this takes the biscuit ...
Sent you a PM.
In the meantime look at this old post:
healthunlocked.com/pmrgcauk...
It refers to a Consultant etc.
Morning Bibberty, I'm not that far away from you in Rochdale area and the Pennine Trust certainly has mixed reviews of its services. I would agree with the others that your treatment has been abysmal and certainly needs flagging up with PALS or even direct to their legal department.
Mixed? Are there any good ones?
Interesting thought, as I've not had to have anything major done in recent times. Procedures I've had in the past have always been very good. My doctors are excellent, so not had to contend with Rheumies or consultants in recent times. They've had no problems with organising heart and DEXA scans etc which is all done through Pennine. But, like Bibberty's problems I do hear similar stories from other sources.
All I can say is that if you decide to up the dose a little bit for those 10 days, then tell them that's what you've done at the appointment, will anyone mind? That's exactly what I did, and no-one batted an eyelid. After all, some people are allowed to vary their dose a bit.
First let me say im sorry you feel so awful .what a cruel and unkind person to add to it ! SHE is the one who is meant to be helping you get better.Its horrible when your ill and feel so much more vulnerable ! I have also listened and followed what the Drs said, but the penny dropped and i started to listen to MY body ! I didnt go mad i just took control and tweaked my pred to a way it helped calm things down . Im not saying ignore them , im just saying that when they give you this advice, they are not walking in your shoes ! This site has taught me to think about my dose and pace myself. I feel much clearer now about what has to be done . Good luck and dont let her be rude or bully you. She has no right ! Best wishes Viv 🌷
I'm really angry on your behalf. I too have never seen my consultant since diagnosis on Oct 2020 but the difference is they are clueless as to what dose I am on, and could only have survived thus far due to this group. I am, wait for it to be cancelled, due to see her for the first time after nearly 15 months on New Years Eve (surely that is a given it will be cancelled). So for those reasons, and that she put me on toc, have kept with her. I think you need to get another as soon as you can, even perhaps, if you pay to see someone privately to give you an opportunity to ask all the questions you have. I would also write to your gp and say you have felt very let down and that you are very concerned about the GCA and possible sight issues etc.Pals to complain about the consultant is also a good idea. I hope someone on here can suggest a good consultant near you as you are entitled to ask for a 2nd opinion, actually anywhere, but the nearest would be better.
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