frustrated PMR sufferer

Hi Annie - how disappointing for you but oh how familiar! There have been a few people on the forums recently who had managed to get down to a really low dose, well below 5mg, only to have a good going flare and needing to jump back up the doses. I am appalled at the way the consultant behaved - and as you know, if it is PMR ordinary painkillers won't help at all. He is also allowing the inflammation to get going really well before doing anything about it and many of us know from bitter experience that getting it under control again is not easy. As long as the underlying disease is there you need some pred - and if it flares it is obviously still there.

What sort of relationship do you have with your GP? They are often quite competent to deal with a non-complicated case and yours might be far more sympathetic. They need educating about PMR anyway so they can recognise it and cope with it long term - far more accessible than a disinterested hospital consultant when there is a problem. The UK one I had was even worse and I never went back.

Have you visited the pmr gca northeast support group site? Which has even more info than is to be found here - all medically approved, including guidelines from the Rheumatologists Association, a DVD about PMR and personal stories. Or the other pmr and gca forum at forumup? Where you will find a load of laughs as well as info and announcements of meetings of support groups all over the UK - think they are also on the northeast site.

Keep us up to date about events - we're a nosey lot!

Eileen

Hi Annie B,

NE forums are here pmrandgca.forumup.co.uk/ and the general site here www.pmr-gca-northeast.org.uk/

Alan

hi annie b quite understand how frustrating this is when you have managed to get down to virtually a maintenace dose unfortunately a inflammatory process like sinusius can trigger a liitle backward step but it may only be a temporary blip get you sinusitus sorted and see if a short blast of slightly higher dose of pred might just dampen it down enough for you to get back to where you were ,my gp and i sort out the dose i never bother with the rheumy he was not interested .hope it all gets sorted dont lose heart and come back to us and let us know how you get on .carolk

I also havent bothered with a Rheumatologist but just tinker with my dosage with my Drs aproval

I have found that any cold /throat infection seems to bring about at least a mini flare in my PMR and over the last nearly 4 years have had to up the dose and let it all settle down again

There was an interesting post on the other forum from someone in Remission and her Dr lets her take a small dose of pred say 3mg if she feels she might have some symptoms starting again As i am on my 2nd bout of full blown PMR I am going to investigate this with my Dr at some point in the hope that if ( or when !! ) I recover form this bout I could do this and hopefully nip another bout in the bud

Hi Annie,

I have had PMR for over 4yrs now. Have been on Prendnisolone for over 2yrs as it took 2 yrs to get a diagnosis. I am a fit and healthy apart from my PMR 55 yr old and have managed to get on a quite a low dose (down to 3mg) However this last winter I had a couple of really big flare ups when I went down with a nasty cold virus. Both times I was left with sinusitis. The first time I had it, nothing would clear it up and eventually my Doctor prescribed antibiotics but also told me to use a Sinus Rinse which I did and it went, however it did come back several weeks later so that time I just used the Sinus Rinse as I suspected that was what cleared it up and it went straight away. I have since read that antibiotics will not get rid of sinus anyway.

I would recommend you try this as I believe if sinus problems go un-checked you could end up with a long term problem.

I have mentioned this on another thread somewhere but I find that taking Vit C at Zinc seems to help me. I did used to take Echinacea but again read somewhere that it is not a good idea to take this if you're on Steroids.

I hope this helps you. Sue

I just wanted to thank you all for replying to my moans and groans it was a bad day! To get all those replys was great I really feel that I'm not alone with this PMR, which is how I have felt in the past. I think I will try going back to my GP who had asked how I was getting on with the hospital some time ago and wasn't surprised that they were not too helpful. He said he had only sent me because my bloodtests are never conclusive. The ESR level is never too high so this test is not the best way diagnosing this condition. I have hospital on Friday will see how it goes and then see GP.

Thanks again, you are a great bunch! Will let you know how I get on.

Annie.B

Annie - I have never had a raised ESR either. You didn't say how old you are but a fifth or so of PMR suffers don't have positive blood results and it is more common amongst younger patients. I was 52/53 when it was noticeable and 57 when it hit me like a truck - never ever a high ESR or CRP test. At nearly 60 the ESR is still 4 or thereabouts. The only diagnosis is a clinical one (from the symptoms) - which might be backed by a high ESR or CRP but not necessarily. And many doctors hold that a vast improvement in symptoms within a few days of starting a course of pred is pretty much diagnostic - 70% or so within a couple of weeks. In my case it took just 6 hours after my first dose of 15mg pred to be able to walk downstairs properly, not like a 2 year old.

SueH - it depends what is causing your sinus problems. If it is bad drainage from the sinuses antibiotics won't do a thing, especially if the extra secretions are due to a virus (a cold or flu). If, on the other hand, the bunged up gunge gets infected with a bacterium (what is called a secondary infection), the right antibiotics will help by killing the bacterial infection. Sinuses are a pain - literally! But mine have been loads better since being on pred - it's an ill wind ...

Eileen

Hi Eileen- I was 48 when first diagnosed now 51 but feel about 81 at the moment! The same with me as soon as I took the steroids I could feel the difference within hours.

Thanks Alan for the website address looks good will spend more time looking later in week.

Annie. B