ESR 2 CRP 5 !!

:magic: :cracker: :bubbly: :cracker: :magic: That's what we like to hear Mrs G. Great news - quite a few of us in the 2.5/2mg club now :lol:

Keep well, really pleased for you.

Love from Lizzie :ok:

Well done Mrs G 8)

I am down to 11mgs now after my first year of PMR, and due to drop to 10 next Monday....so fingers crossed.

I will be going to Mexico next weds for another Vit D top-up :wink: , but the weather here has really got much milder and have been able to get out for a walk without being wrapped up in a hundred layers :roll: 8)

I do find that getting out a bit more is great for the mind....even if the body sometimes complains a bit :lol:

have a lovely day everyone and hope you are all having the lovely sun that we have today

Love, Pauline

Mrs G that is fantastic news.......... you give me hope down the line and something to hang on to :D :D

Interesting to hear what your doc was saying about the AA so makes me feel a lot happier having stopped taking it :D

Pauline have a great time in Mexico..... wish I was on a plane going somewhere soon but since the weather is fantastic here at the mo ( well until the week-end at least) pleased to be pottering at home and in my garden doing long overdue jobs :lol: :lol:

Hubby and I trying to decide where to go ( shorthaul) for some sun in September now that my doc has given me the thumbs up for a short flight. Spoilt for choice :lol: :lol:

Hope everyone is feeling good. I dropped down another 1mg to 16 and all well so far.......

If I manage to hit 15mg next week in time for seeing my rheumy, should I stand my ground and insist I only go down 1mg at a time, or do the 'suggested' next drop which would be to 12.5....... would like some advice please.

Hello all

Thanks for your good wishes

Have a great holiday Pauline

Fifties Girl It does all depend on the Rheumy I can discuss things with my Dr on a mutual basis but Ive has some dicatators I know best in the past !!

You can start with beacause of how unwell Ive felt I have been reading as much information on this as I can and I dont really feel as though I could cope with very fast reductions and would prefer to go at a slower pace but it is a delicate situation Good luck

Another great day Off to lunch again !!

Mrs G

Fiftiesgirl: two questions (cos I can't remember), 1) how long have you been staying on each dose before going down again 2) how often do you see the rheumy?

Me, I would insist on sticking to the 1mg at a time since you have done so well with it so far but the other option would be to agree with him but do 12.5/15/15/12.5 etc for a couple of weeks and then 12.5/15/12.5/15 which means that over 3 days you aren't going down more than 1mg. Some people don't get on with alternating the dose like that but most do and you have plenty of scope for adding an extra 2.5mg if you do feel bad. It probably means taking 4 weeks rather than 2 to drop - but if it works you have done well in that 4 weeks, if you drop from 15 to 12.5 just like that maybe it won't and you'll feel rough again and you'll have achieved nothing.

I must say I'm becoming more and more impressed with the third GP in our practice who I saw last year when I decided I was unhappy with the AA and his immediate comment was \"It's had some bad press - I think a wait and see policy is fine. Stop taking it, I'm happy with that.\" As for the pred - I've managed to get from 20/2 days to 19/2 days in 4 weeks by going 1/2mg at a time. That's after just over 18 months with a bad period last summer which lasted until after Christmas - not a flare, an undiagnosed UTI, very cold weather and another UTI! So now I'm keeping my fingers crossed!

Oh MrsG - all these parties - what will you do when they come to an end? You won't know what to do with yourself! And Pauline - have a good holiday - another one???????? One of the skiing neighbours is off to India next week - usually 4 of them go together, this year it's just 2. I'd love to go - but my other half isn't interested

I've just been sitting up the mountain in my sleeveless T-shirt toasting! It's not good for the snow so the skiing doesn't last long, just about an hour or so, but the coffee break is that much longer!

EileenH

Hi fiftiesgirl,

I too would definitely stick with the slower reduction of 1mg at a time. It was suggested by my GP and Rheumatologist that I do 15/12 and a half/10, but I asked to do 1mg at a time and that's what I'm doing--so far so good, on 8mg at the moment. Been on steroids since 12th October 2010.

Best wishes,

Molly.

,

Fiftiesgirl,

I forgot to say that since 9mg, I'm coming down half a mg at a time, 2 weeks at each dose.

Cheers,

Molly.

Thank you everyone for your input..... very helpful.

Eileen H...... saw my rheumy in October for the first time where he completely missed my PMR and diagnosed something else! Then saw him beginning of December and nothing until next week..... doc 'managing' me!

He reduced me from 15mg after three weeks to 10mg which returned all the horrendous symptoms and then my poor doc trying to get on top of it all over a month and finally putting me up to 20mg and a call to him where he told her he could not see me until next week!

So have come down from 20mg to 18mg..........stayed on that for two weeks because of some discomfort but when all ok moved onto 17mg and everything was fine and a week later onto 16mg and am fine........ due to go to 15mg next week when I will be sitting in front of him....... I only want to go down 1mg at a time and see how I go so all your comments have really re-inforced that.......my body and my pain...... would rather go slowly and carefully but will mention the 15/12.5/15/12.5 Eileen H has mentioned and see what he says...... at the end of the day I am going to do WHAT I feel comfortable with as he does not have to live with my pain! :roll:

Actually - if your GP is doing the day to day stuff you can do what you like with their approval - they are the people who write the prescriptions and that is what matters so you have the selection of tablets you need. You obviously had a rheumy like the two I had the pleasure of - NOT! Keep your GP onside and the rheumy at a distance!

Since the 1mg reductions have worked so well so far I wouldn't mention the other versions to him at all. He is an NHS doctor, he only has his job because of patients like you, just like the GP, and I would see the GP beforehand, tell him/her your concerns and if they are now happy to look after you, just say you want to stick with 1mg at a time. After all you are going down steadily which is what they want/need. Don't rock the boat.

Good luck,

EileenH

Thank you!!!! Going for the 1mg reductions

You are such wonderful ladies and don't know what I would do without you!

Mrs G

That's great - don't know how your ESR is as low as that tho! My lowest has been about 12.

As you have all been discussing your reduction regimes, I will tell you mine.

Was on 5mg in October - have been reducing very slowly since then but avoiding the 1mg tablets as they started up my acid reflux again. Have taken a small drop every 2 weeks - starting on 6 days of 5mg and 1 day 2,5mg then after 2 weeks, 5 days of 5mg and 2 of 2.5 (the 2.5mg at suitable intervals of course).

Am now on 2.5mg every day. Will check my bloods and with my GP before dropping below that. He tends to let me do what I want and from posts on here, I think I am lucky. He admits when he doesn't know stuff which is better than thinking he knows it all.

Beev

beev - my ESR has been 4 or thereabouts ever since I've been getting it looked at. From the first time I went to the doc saying I had sore muscles right through all the other bits, the stiffness, the eyes not being right and even the I can hardly get out of bed etc etc. And the high-sensitive CRP is about .22 where anything under 0.5 is good. However - the local vit D normal range is 10 to 15 whatevers - I've managed to get mine up from 20 to 58 over the winter. Which I see as a good start!

EileenH

hi eileen.

would just like to ask you a question, what should my esr be, just got blood test back and mine is 30. i've not been to good lately and i can't manage to get down to lower than 10mg of preds a day, my doctor told me not to increase as i'm seeing my rhuemy on 14th june and see what he says.

Thanks ascotlady

In young people a normal ESR value is up to about 20-ish. As you get older it increases and a rough guide to find what it should be is to double your age, add 10 and then divide the figure you get by 2. So at 60 your ESR can be up to (60+10)/2 = 35. Obviously, at higher ages the ESR figure \"allowed\" by this gets higher so common sense is called for.

Generally, however, once the figure gets to about 40 it is assumed that, however old you are, there may be something going on. The ESR is a very indication that there is some inflammation in the body - it is even raised in pregnancy and may be raised during a cold or flu. Some people have very low levels - as I'm sure you have noticed, mine is in single figures and always has been even when the PMR was really bad. So really - your 30 is fine according to the textbooks - but it would be a very high level for me. It's just an indicator - and cannot be taken as eveidence of anything on its own.

Does this help?

Eileen

hi eileen

thankyou for your reply, when i was first diaganosed with pmr and was really ill my esr was only 20 and went down when i started on steriods and i felt so much better, but the last 3 blood test i it has gone up, 23, 27 ,30 and ive been feeling quite ill with the pmr. got a feeling my rhuemy will put my steriods up again when i see him on 14th june. so i see that the esr doesn't always count its how you feel that matters.

ascotlady