Bad Rheumy experience.

Oh Jenny, I don't know what to suggest to you. Isn't there one GP who is any good? Or could you change Practice? You need someone on your side.

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.

Hi Jenny

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

Hi everyone

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

You have PALS in England don't you, perhaps they can help.

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

My markers were also very low and were used to evidence that I can't have PMR, I am 49 and have had this for 6 years, as everyone else reports steroids were an amazing and instant cure and I am now down to 1 mg, have tried several times to stop but pains and stiffness return immediately. Rheumy says carry on 1mg not a concern, GP says must stop taking it as it is a concern!

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

Cornishmaid, that is interesting, I saw my Dermatologist yesterday and described symptoms not dissimilar to yours. I am on 5mg/day Pred and MTX 10mg/week for a different disease but the same pills and problems! He thinks it might be my thyroid, so I had loads of bloods done and await the results. My GPs would never have thought of that! I sometimes think it is all connected with wind direction! Sometimes the GPs say that they have a lot of patients who have been on steroids for years..............make of that what you will.

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.

I find this insistence on raised markers by ignorant doctors so very annoying! In 15 years (2 undiagnosed, but the onset was further back than that) I have had raised markers once and that by only a very small amount and due to something else entirely. I'm hardly alone with this, about 25% of patients diagnosed with PMR don't have raised inflammation markers either.

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.

Thank you so much for that, I have ended up feeling bad arguing my case for steroids but on 2mg I was living a comfortable life most of the time, I could get up and about, now I am back to feeling like I am 20 years older than I am, I am back at the doctors surgery on Fri for another battle, good news is I m moving house in 2 months and will have to register with a new doctor so fingers crossed they will be a bit more helpful. these posts are so useful as it seems you guys know more than they do.

thanks