here we go again!

Oh beev - what a pain! Literally and metaphorically!

Try 2.5 daily and see is my suggestion. Or maybe 3 or 4 days at 5mg and then straight back to 2.5mg. But definitely every day. They usually say add 5 to current dose for a short time for a flare (that's what my guy here did in the summer and it was a \"is this GCA\" sort of situation. I had been on 10mg, spent a few eeks on 15mg and am back at the 10mg level again despite having had a possibly dodgy batch of pills that let the PMR have a go at coming back (apparently far too low a dose being absorbed).

Shame you hadn't gone for a blood test when the niggles first started, you might have been able to stop the inflammation in its tracks before it got going again. It does sound as if you are one of the people who needs a very long time at a very low dose. What are you now on for the other things? Wonder if any of them interfere - or gave a false low for the ESR?

Never mind - if the other things are improving, even if slowly, it isn't all bad. And whatever - have a very happy birthday despite needing a bit of pred. Not the end of the world in the great scheme of things - unless you let it be :wink: Think positively!

:bubbly: :choc: :cracker:

No happy birthday over here - and no snow or skis on the other site so I'll indulge myself :ski: in the hope we will get some snow :oops: Bit bare at present - though you can ski on the top on artificial!

all the best

Eileen

Thanks Eileen

I'm glad you are so quick off the mark.

I asked the nurse to add ESR to my latest load of bloos testa 2 weeks ago (RA factor and auto-immune profile) but she didnt!!! They all came back ok anyway.

I wasn't taking anything new when the ESR was so low at 6 (but had been on antihistamines for a few weeks and the carbocisteine for my lungs).

I wonder if all my latest stresses have caused this flare? I will try 2.5 every day I think. Hope thats enough. I dont have as much soreness and stiffness as at the onset though, just the arms/shoulders. I have just been on Nitrofurantoin antibiotic. Would that have put it up??

Beev

HAPPY 60th BIRTHDAY BEEV :diva: I hope you have a lovely day and start to feel better very soon.

Take care and love from Lizzie Ellen xxx

Hello Beev

Oh dear, just when you had got down so low. But because you have had so many other problems to deal with (not to mention stress over!) plus so many antibiotics, it was perhaps a little inevitable, unfortunately. I would probably have taken Eileen's second suggestion and increased to 5 for a couple of weeks (still a very low dose as far as side effects are concerned), but that's probably just me! I do hope the little increase works for you - and that the nurse doesn't forget to do the ESR blood test before reducing next time! :roll:

Best of luck, Beev, and my very best wishes for your special birthday tomorrow - hope you're having a special treat. :gift: :bubbly:

Shirley(MrsO)

Hi Beev

Sorry you have been poorly again Very difficult for you not being able to take the non enteric coated tabs

You have been given advice already so all I will say is I hope you have a good Birthday despite everything else

Best wishes

Rosemary

Hi all

Thanks for your good wishes. My family gave me a wonderful day yesterday. Surprise breakfast in a restaurant, a surprise holiday with all the family to Berchtesgaden in April, a 3 day trip to Bath with theatre and a spa treatment and a trip to mamma Mia in London in 10 days! They had also spent mnoths making a dvd with loads of contributors and a Beverly book. I was so touched.

Unfortunately I had a worse day with my down below problems and was on paracetamol all day! Feels like a sore bit deep inside me around my ovary area when its bad as well as urethral pain.

I've taken Eileen's advice and am taking 5mg for 3 days then dropping to 2.5mg. I am worrying now incase the raised ESR could be to do summat nasty in my bladder or bowel (seems to be implicated somehow) rather than to do with my PMR??!

Many thanks

Beev

Beev

Wow! What a wonderful birthday, full of surprises. I saw Mama Mia recently and absolutely loved it...didn't want it to end. :P I can imagine the surprise DVD with all your family and friends contributing would have been very 'touching' - what a lovely keepsake that will be.

What a shame your special day was somewhat marred by your internal pain and obvious worry about it. I believe you've had scans but can't remember whether you've had an ultrsound of the problem area - if it were me after all this time I would be demanding serious investigation even if I had to pay for it. Did you try the cranberry tablets my friend recommended as finally curing her UTI after several courses of antibiotics?

Yes, of course, the raised ESR could be related to any other infection going on in your body, apart from PMR. Perhaps Eileen can help further here, but do stay positive Beev and get well so that you can enjoy all those lovely pressies ahead.

Shirley(MrsO)xx

What a lovely birthday! You must have enjoyed it despite the pain.

Shirley's right - off to the doc (I know, again :oops: :cry: ) and request a referral to gynae - there are all sorts of things that may be causing it but they are a good place to start! Then you can stop worrying about what it might be and deal with it properly so you can have your lovely holidays. I had a similar conversation with my daughter last night - she is priceless considering she is a healthcare professional herself :roll: :wink:

Eileen

Hi all

Just been to GP again! She suggested doing 5mg for 4 weeks to stabilise then 2.5. I suggested doing 5 for 2 weeks then repeat ESR then poss 2.5. What do you think? I have booked next ESR on 19th Dec.

When I described some of the odd symptoms I'm getting in pelvic area - weird tinglings deep inside, pains moving around, some feelings of numbness on the day after its been worse, some back-ache etc she suggested trying a small 10mg dose of Amitriptyline at night as she thinks it might be nerve endings triggering for some reason. If it works, she says an osteopath would help to realign spine. If not, she will refer me to a urogynaecologist.

Yes, I did have an ultrasound of abdomen, pelvic area and intra-vaginal.

Am seeing gynae physio tonight for pelvic floor treatment. Did I say, I have a cystocele and urethrocele? I am also on oestrogen cream to see if that helps with the urethral discomfort - started a week ago. That does appear to be better than it was most days (apart from my birthday of course!!)

Beev

Doing 5 for 2 weeks and then looking at the ESR still leaves the option of a bit longer at 5 if its needed. So she can't object! How sensitive are your markers? Make sure you get a test done a couple of weeks after the drop to 2.5 - just in case that is too big a step and consider a week or two at 5/2.5/5/2.5.

Anyway - as long as you are feeling better, that's the primary concern :D

Eileen

Eileen et al

One more question - from your knowledge of the NHS etc - my GP said she can not refer me for a MRI of the pelvic region. She says it would have to be a consultant who did that. Is this correct??

I am also going to challenge her about the idea that she cannot send me for gynae physio as I went to see the physio privately and she said she sees no reason for that as she gets several referrals from GPs.

I am wondering if it depends on PCT as the physio is in Yeovil which is Somerset and we are on the border of Dorset/Somerset but just in Dorset. This would not seem fair. I am beginning to wish we lived in France or Germany as I have been paying huge taxes throughout my life, about 50% of which I think goes to the NHS and now, in my hour of need, I am having to pay for things privately.

Beev

I think she is probably correct about the MRI - but she can jolly well refer you to a gynae consultant. Sometimes direct referrals are something the hospital offers, sometimes it is the PCT that makes the approach. Different PCTs have different rules but there are two sides to this. It is not uncommon in my experience for GPs not to have a clue about what they can and can't do - David's department, for example, took direct referrals for certain things and GPs in the area would deny this.

But something you can do is contact the PCT yourself. There is a person there somewhere who deals with complaints and someone else who can tell you exactly what you can have without asking for special permission from the PCT and also whether you can ask for a special dispensation. I know these people exist because my friend used to one of the jobs and now does the other! She thoroughly enjoyed/enjoys both by the way as she sees it as a great way of making the system work better.

Contact your PCT and try that mode of attack. I can't say I've been particularly impressed by your GPs in the past beev - why should they be any different now! There have been changes in the NHS but the worst to me is the concept of incompetent and disinterested GPs being the entry to the whole system - especially when they are arrogant enough to argue the toss about whether we are ill or not!

Eileen

Beev

Yes, your GP is correct, an MRI has to be ordered from a Consultant, and also ultrasounds etc. And I am in Gateshead.

I fell foul of the physio thingy as well. As the GP has a physio's attached to practice, and I wanted to go back to the physio I had seen before at the local hospital. No chance, as the practice pays for their physio and does not pay the Trust for the use of their Physio's. So it could be that your practice does not pay for the gynae physio you went to see.

I can see this happening more and more, if and when the Govt gets its way and GP's commission services.

Different PCT's have different regulations as well.

Hi Mrs K and Eileen

She did do a direct referral for the ultrasound, but I eneded up paying for one to make it quicker.

The gynae physio I'm seeing said she does get direct referrals from GPs but I suppose that could be from Somerset GPs.

Anyway, i will question this again when I see my GP next.

Beev