tapering steroids.I have been on 15mgs of pred for 6 weeks, have been for review with Dr this morning.

[daveD]

he as advised me to drop to 12.5 for 4 weeks, drop 10mg for 4or 5 weeks then have a blood test.I asked him about esr some thing i would not have done till i joined this forum 13/2/14 was 49. 20/3/14 was 5, not sure but think that is A OK?.I am thinking PMRpro tapering plan might be called for,dont want to blow it now.Apart from Fatigue & sleep+ a few aches i am doing OK. THANKS to one and all. Take care. Dave

[PMRpro Ambassador]

Yes, an ESR of 5 is a good level, well in the "normal range". As you know by now - I'd say his tapering scheme is a bit optimistic! But then - I'm biased!

Good luck - hope you continue to improve as you have so far.

[Celtic PMRGCAuk volunteer]

Hello Dave

That ESR is looking good and you say you are feeling ok, hence your GP's advice to reduce to 12.5. That corresponds with the BSR Guidelines to get patients to the lowest dose possible that controls the inflammation and works for many people and hopefully you will be one of the lucky ones. I certainly managed 15 to 12.5 without any problems although admittedly I was coming from a higher starting dose.

However, all being well on 12.5, if it was me I would ask for another blood test before automatically reducing to 10mg - as you are someone who had raised markers at the outset, they can be a very useful guide as you reduce down through the doses. My blood tests (ESR and CRP) were monitored before each and every reduction at these higher doses - if my ESR remained stable and I felt reasonably ok then I was advised to reduce; if not then I would remain on the present dose for a little longer until the blood tests were normal.

Good luck, and make sure you take things easy for a few days following the reduction to allow your body to catch up with the new dose.

[daveD]

Thank you to PMRpro &Celtic.for your advice, I have always taken Drs word as given,on under active thyroid, diverticular disease.BUT on this one I will go with those that have bought the T/shirt.He has not given any set dates so i will go with what my body tells me and hopefully advice from fellow sufferers.On wards and upwards i hope.ALL THE BEST.

[suzieh]

I would advise tapering slowly even if blood tests look ok. I have under active thyroid too and since taking the steroids have had to reduce my thyroxine. ( first time in 10 years!). I have found my PMR and thyroid problems have left me feeling great sometimes and tired out at others even when blood tests look ok. I have been using a slow tapering ( 1 mg a month) and am now down to 5 mg. this has taken 18mths. Have only had one bad week since Xmas so feel it is all going well. Good luck with your reduction plan - keep us posted!

[daveD in reply to suzieh]

LO suzieh. I could never work out being called under active,more hyper, i am on 150mg levo.I am just starting on this journey, i wish you all the best for the rest of yours.and as we say Keep taking the Tablets.All the best.Dave

[suzieh in reply to daveD]

Ha. I felt the same - people who know me also used to say I was hyper too! I will be interested to see if anything happens to your thyroid dose. I was also on 150 mg 18 mths ago; started steroids and then within 6 mths had it reduced to 100 mcg; then another 6 mths later to 50 mcg. Feel ok dr has reacted to blood test results

[daveD in reply to suzieh]

THANKS suzieh, thats another thing to add to my list,with the under active thyroid i could not sit for more than half a hour before i would be looking for jobs to do.now with pmr,pred& advice a lot of my time is spent resting, I hope we are OK discussing thyroid probs on this forum i dont want to ruffle any feathers.will keep eye on it,just as a foot note the Dr had blood done for thyroid when i first had aches&pains.Chill. DAVE

[Tweetiepie]

I was at my usual eye clinic on Tuesday previous month I had a blood test my ESR had gone fro 9 to 33 .I was bothered as it was going in the wrong direction . The Doctor first asked my age which is 75 then halved it which meant it was still OK . Hope this helps

[PMRpro Ambassador in reply to Tweetiepie]

Hate to disagree with him, but no it isn't - if you have had a level of 9 and it has moved up that much it is an indicator there is something going on. Whatever the figure is.

The "half your age" calculation figure only should work up to about age 55 - so that means under 30 is the maximum anyway. The "normal range" is the range of readings found in a massive healthy general population - and for ESR it can be from 1 to 30 or so. That means some people have a normal in single figures, others have a normal of in the upper 20s. But what matters is YOUR normal - and if your normal is usually in single figures and suddenly it is far higher - you are outside "your personal normal". It should be kept an eye on.

It's a common misunderstanding of what a normal range is - and why regular (say annual) checks of "bloods" provide so much more information about you as a person and your health. In this case - another test should be done in a month or so to make sure it isn't continuing to go in the "wrong direction". It may start going up before you have symptoms - but equally it may remain stubbornly where it was for some time after you have symptoms. It is only n indicator and must be taken together with everything else. So, if you feel fine no need to panic, but keep checking.

[daveD]

thanks PMRpro,Tweetiepie, I am afraid i am not very bright on this subject, I am due to have blood tests in two months time.I will try to act on how my body & brain? feels. I am starting a slow drop to 12.5 keeping a eye on your system.Please keep up the good work.

[Tweetiepie]

I am far .from bright on the subject Dave hospital wanted another blood test the next week but the district nurse took another 10 days to show up and don't think she would have come then if I had not said I had lost one eye to GCA and did not want to lose the other for the sake of a blood test. Think in view of what I have been reading here will talk to GP again . The consultant eye doctor has written to my GP saying I need regular blood tests and she sent me a copy and that is a first.

[daveD]

LO Tweetiepie. IT all seems a bit hit and miss i asked the Dr about the Bristol hosp reduction plan no interest shown.I hope to start a reduction this weekend from 15mg to 12.5. I will try one at 12.5mg then four at 15mg i hope that is ok..With out this forum i would be really floundering.it does not matter what time of day or night you know some one is there for you.its all enough to drive one to drink.HAY HO. take care. DAVE.