here we go again!

Posted , 6 users are following.

Hi all

I havent been on here for a while due to my other health problems! I'm hoping that's going very very slowly but still have symptoms.

Now I have been having sore upper arms/shoulders for a few weeks and have just had my ESR tested - up to 36 again . I was at 37 when my PMR started sad . So it looks like I will have to increase Pred. :wah: It has been in the teens since I've been on Pred then suddenly dropped to 6 a couple of months ago, as if it plummeted before pinging up again (anyone experienced that??).

Some advice please from your combined experience. I have been on a 2.5mg tablet every 5th day for a couple of months now. Should I increase to 2.5.mg every day for a while and see what happens?? Is that enough??

Am seeing my GP on Wednesday about the other health probs but thought I should start an increase before then. It's my 60th birthday tomorrow so what a lovely birthday present to increase my pred, eh!!!

Beev

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  • Posted

    Hi all

    Advice needed as usual!!! You might remember my ESR went up to 36 so went on 2 weeks of 5mg. ESR then came down to 19 so have done 2 weeks of 5mg/2.5mg alternate days. Do you think I can drop now to 2.5mg every day if my ESR is ok??? (I've just had blood taken again this morning so results in 2 days). I really don't want to do the slow taper again if I can avoid it.

    Thanks in anticipation!

    Oh and Happy new Year to you all!

    Beev

  • Posted

    And a Happy New Year to you Beev :bubbly: I'll leave the medical advice to Eileen :doctor:

    Love from Lizzie Ellen xxx

  • Posted

    Hi beev,

    I'm sure Eileen will be along sometime to reply, but the most successful drops have usually been only 10% at a time... [b:35871de471][i:35871de471]especially [/i:35871de471][/b:35871de471]when you get down to the 5 mg level. 10% of 5mg is only .5mg so doing 5/2.5mg alternate days is an average of 3.75mg... or 25% at a time. At the 5mg level you're already near the level your adrenal glands would normally produce anyway.

    If 5 is working for you, why not do 5,4,5,4,5,4,5 for a few weeks and see how you feel and then go from there?

    Just a suggestion.

  • Posted

    Hi beev - happy new year and hope 2012 is a lot better than 2011 was! As well as the ESR being down - are you feeling well?

    Is it you who only uses 2.5mg enteric coated tablets? I'd wait and see what the ESR has done before deciding but I think if it were me I'd go to 2 days 2.5, 1 day 5 for a few weeks before plunging into all 2.5mg. As Rick says that is a biggish percentage drop and it would be a shame to spoil the ship for the proverbial hap'orth of tar. It's the gap that always bothers me - one dose is that bit too high, another is that bit too low, the smaller the shifts the less likely you are to miss the baby bear dose :lol:

    Eileen

  • Posted

    Eileen, Rick, Lizzie Ellen etc

    Yes it is me who only takes the coated tablets. I know about the 10% drop thing but you might remember Eileen that only 4 weeks ago I was on 4 days of nothing and 1 day of 2.5 and had been for a couple of months. So, I was thinking maybe I could drop back down more quickly than when I was tapering before - like you do when you have only been on steroids for a short time eg for lung inflammation. What do you think Eileen?

    Yes I am feeling fine again PMRwise and even my bladder problems seem to be a lot better although still a bit variable. I don't know if this is better because of a simple very slow improvement or because of meds I am now on. I have been using oestrogen cream for a couple of months (now twice a week) and have been taking 10mg Amitriptyline at night for about a month. She (GP) gave me this as she thought my description of some of my symptoms suggested possible nerve involvement. She said to stay on this regime for about 3 months then gradually come off one thing at a time.

    I've also been going to a private gynae physio for pelvic floor exercises and being attached to a machine which helps. I expect you know what I mean, Eileen.

    I am also managing to drink red wine again!! Maybe that's the best medication! :D

    Yes, I will wait for ESR results before I drop. The thing is I took ages to drop from 5 then from 2.5, doing a very slow Ragnar type regime. I think this few weeks of 5 and then 5/2.5 might well have been enough to get the inflammation under control again....???? I suspect that the stress I've been under could well have been responsible for the flare?

    Let me know what you think, Eileen. I will do as I'm told!!! :?

    Beev

  • Posted

    Yes - I was remembering you were on 1 pill every fifth day, Beev. You know how you feel - and I wasn't thinking in terms of spending weeks on each reduction anyway. The thing with PMR tends to be the underlying autoimmune disease whereas in lung problems it is an inflammation from something else that is being aimed at, once it is gone it shouldn't come back. Maybe one day a week less of the high dose and one more of the low each week would work well?

    However - have you looked up amitryptyline? It is used beneficially in several things that could have been considered with regard to the problems you described, especially the bladder problems and they are sometimes unusual manifestations of vasculitis. I wonder if she has hit on the answer by accident since she appears to consider the nerve involvement use for amitriptyline to be primary.

    Eileen

  • Posted

    Hi Eileen

    Sorry - being thick. What do you mean by high dose/low dose? Do you mean a week of 2.5, 2.5, 5, 2.5, 2.5, 5?? or straight to 2.5??

    By \"symptoms I described\" do you mean the bladder ones? Would amitriptyline control vasculitis??

    Beev

  • Posted

    PS

    Eileen,

    Could you look at my question on \"prednisolone weight gain\" thread please? About ESr going very low just before jumping up to 36.

    Thanks

    Beev

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