Bad Rheumy experience.
Posted , 6 users are following.
Oh Gosh. What a bad experience I had today with my first rheumy appointment.
I have normal markers but had really bad pains. Within 3 days of taking steroids apart from my hips I have no other pains.
Went to see a rheumy today who gave me a 10 min appointment pulled my arm twisted my neck and didn't take any notice that my blood pressure was 170/110. She told me that because my markers where normal she didn't know what I had and that I will have to come off the steroids 12.5mg tomorrow and bit by bit then stop them. She also gave me a blood test as long as a shopping list (all these test were done within the last few months all normal)
I have been in a constant pain in the past in my arms, shoulders, neck and unable to get out of a chair. Since the steroids my life is wonderful.
I have had some excellent advise from Mrs O Eileen and lovely people but what can you do when your GP is a new trainee and will take the side of a experienced rheumy. Several of GPs at the practice are sheep minded and all are on the side of high inflammation markers.
I cannot bear to return to pain. I am beginning to think that perhaps it is all in my mind!
Do you have any advise for me. Kind regards Jenny x
2 likes, 8 replies
mrsmop
Posted
I had a similar experience with a Dermatologist, there were 3 Consultants working the same clinic and they all saw each others patients. I kept getting the same woman, whose main object seemed to be to get shot of me. I eventually discovered that the clinic nurses decide who sees whom and now I ask to see the Consultant I want to see. I dread him moving.
Do you have a nurse in the clinic you can talk to?
I don't know what else to suggest. I wish you well.
beev
Posted
I have sent you a private message too.
My ESR was only 37 when I started with PMR. This is lower than expected but research shows, I believe, that inflammation markers are not raised with everyone. My symptoms disappeared by 98% by 4pm on the day I started taking the Pred - started with 20mg I think.
You could contact Prof Dasgupta who is the main researcher in this in the UK I believe - even request to be seen by another Rheumy? Certainly try a different GP in your practice?
All the best
Beev
jenny_sussex
Posted
I'm just so pleased that I had the benefit of this forum before I went for my first rheumy appointment. I did have a sympathetic GP, so I'm luckier than many - and it gave me the confidence to let the rheumy give his grudging agreement to 'atypical pmr' and then ignore his treatment advice until I see my GP again!
My esr was 27, but it dropped to 4 post pred, so is it about relative numbers and not the numbers themselves sometimes?
I know doctors train for years and work hard for their status, but patients have more access to information now - and it's not all 'off the wall' stuff, but accurate and specific. Time the docs learnt to feel less threatened........
I'm certain that the likes of Eileen and Mrs O have more specific and detailed knowledge than consultants who have never had to deal with pmr. My husband contracted bullous pemphigoid a few years back - another auto immune disease even more rare than pmr. He was also lucky to get referred to consultants confident enough to open a book in front of him and look up what and how to do.
Hang in everyone - stay strong and keep on keeping on. It's your body, your pain - not theirs.
Best wishes to all
Jenny
mrsmop
Posted
I'm interested to hear that your husband had bullous pemphigoid, I have that too,with Cicatricial Pemphigoid which is notoriously difficult to treat www.nhs.uk/Service-Search/Patient-advice-and-liaison-services-(PALS)/LocationSearch/363
I've found a link for you, good luck Jenny
cornishmaid
Posted
I always only had pains in hips, thigh and lower back/bum area but as soon as i try to reduce it can appear in shoudlers/arms and now elbow (anyone else?)
have to say, pains are less or I am used to them, I have a problem with some discs in my back (another reason GP wants steroids to stop) and at times it is difficult to tell exactly where the pain now comes from. Have an appt for a scan on my back next week, hope it shows something that can be treated, am taking Naproxen to help with Steroid reduction but doesn't help much
mrsmop
Posted
It seems to be more difficult to come off steroids the lower the dose you are on and to come off 1mg, you might have to do it alternate days/weeks/months and very very gradually come off them. I would listen to your Consultant.
Nefret
Posted
Is there any one of the doctors in the practice that would refer you for a second opinion? Would it make any difference if you printed off the BSR guidelines for PMR and took them with you? Can a family member go with you to provide moral support and backup?
Otherwise, all the other options I can think of right now have been covered. Cornishmaid, I was tried on every anti-inflammatory known to man before diagnosis and not one of them helped at all. The problem is that if you are on steroids then you shouldn't be taking anti-inflamms anyway as they can both affect the stomach lining.
I am currently on a 5mg maintenance dose and will be on it for life. Why doctors get so tetchy about small amounts baffles me, but I suppose many of them aren't used to steroids being used long-term.
cornishmaid
Posted
thanks