GCA/PMR 7 years... finally got down to 2mg Tuesday but haven't been feeling great, last 2 days terrible pain in my wrist (was diagnosed with PMR with swollen hands and wrists a year after PMR) have been reducing by 0.5mg per month but today I went back to 2.5 and it has eased the pain a lot .... please can someone advise me where to go next? Doctor wants me off as soon as possible but worried about reducing to 0 and not sure how long I should stay on 2.5 or how to reduce 3 Rheummy appointments cancelled.
Last results
ESR 53 CRP 10
I have major problems with right ankle so possibly the raise in esr could be due to this
Many thanks
Written by
suszannah
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Then they are being very silly. Those bloods and the return of symptoms that are relieved by more pred show you have gone to too low a dose. Listen to that doctor and you will end up getting worse not better.
Any dose under 5mg is low and safe for long term use - and if 3mg hold the symptoms and blood markers steady that is where you need to be. And if it needs more - then it needs more. No other ifs or buts. Professor Dasgupta said in a webinar a month or so ago he keeps patients on 2-5mg longterm as it reduces the likelihood of relapses.
When did you first notice the wrist pain? Any other niggles? What was the previous blood test result?
Thank you for replying blood test in June was crp 11 and esr 47 mine has always been high even before the illness, I have arthritis, bone spurs tendinitis and tenovenocitis in right ankle so always going to be in pain been waiting since January for injection.
Been a bit achy since tuesday but not a full blown flare, feel a little better for taking the 0.5mg extra though
Pro has already said what l was going to, especially the bit about what Prof Dasgupta said about maintaining the low dose indefinitely.
During the 7years you’ve been in Pred it’s been masking any other ‘Wear n Tear’ or Arthritic Conditions that have developed so although they may feel ‘sudden’ to you they could have been developing over a long period.
When l got to 5mg (Post Chemo) literally my Achilles Heel started to play up again, my ‘Frozen Shoulder’ resolved when l first started Pred & other old ‘War Wounds’ disappeared but they reappear when my dose is lower!
I’ve got a new ankle issue, it’s mechanical rather than anything to do with PMR but l’m not perusing it at the moment, l will mention it at my next Appointment but for now l’m just aware of it.
You could try writing to your Consultant explaining what’s going on, l did & l’ve had an increase in Meds so that has helped enormously.
Thank you I woukd like to get off them if possible if not be happier with low dose, already have cataracts and osteopenia from pred it just seems never ending, this is the lowest I have ever got though
Most people have osteopenia anyway even without a pred history - it all depends what degree, And cataracts are not going to go away because you get off pred - but they are easily dealt with!
We all despair at doctors who “want you off Pred” when at such low doses - which are causing nothing in the side effect line! ....but obviously keeping your PMR under control.
Stick with the 2.5mg if it’s working for a few weeks, and then maybe try tapering again.
Who is writing your prescription? Your GP I guess, but if you are still under the remit of the Rheumy, then as MrsNails suggests maybe contact his office.
thank you DorsetLady 2.5 seems better today than 2mg amazing how much a small difference can make this is my 1st week out if 4 at 2mg but will do as suggested and carry on with 2.5mg fir the next 3 weeks , shared care with gp and Rheumatology gp prescribes the pred, already had 3 cancelled appointments so doubt if I will get seen this year
If you aren’t already, as it doesn’t sound as if you are, maybe try a slow taper over weeks rather than an overnight step down - such as this - others are available- healthunlocked.com/pmrgcauk...
Sorry you have been experiencing pain. I completely relate. I was recently in Club Zero, for a whole month, the first three of which were fine, the fourth not so much. With a little experimentation (I took 5, then 4 for a couple of days and so on down to 1) I am now at 2 mg, which is where I was last year around this time, and where I'd been with occasional forays into unsuccessful taper territory, or up again to 2.5, for several years. My doctor was happy with me when I got to 3, and although she encouraged me as I tapered lower it was at my speed. She just gives me the prescription I need. I do have the beginnings of cataracts, but after five years on pred and being kind of old anyway, who knows if the pred had any effect or if it's something which would occur anyway? I actually improved my bone density while still on a higher dose of pred (over 5 mg for at least half of the year between DXA scans). So when doctors want to blame everything on pred they are overlooking the sad but undeniable fact that we are all aging at the same rate as we would have without the medication. And, most significantly, with a small dose of pred enjoying our years much more than we would without it.
Thank you yes ageing isn't helping and I do wonder if any little ache or pain is pmr or pred related, often say to daughter that I would love just one week on 10mg just to feel normal again as I was getting lower the more tired I felt have lost interest in lots of things I used to enjoy .... don't think I will ever get off them but just want to feel like my old self again, just don't feel like me just now ..... will see how I go on 2.5 for a few days and if no better will try 3 ... not long after I had taken 2.5 instead of 2 pain in wrist started to disappear so something was going on there
I know what you mean about wanting to feel 'normal' again. Like you, I had overshot the dose at 1.5, couldn't manage the ever-increasing pains and stiffness any more, so on the advice of PMRpro, went up to 5mg for 7 days. What a difference! Felt like the old me. Then have dropped down to 3 (gp had suggested 2 but was erring on the side of caution), and so far am feeling pretty good so staying here for a couple of months. Will be speaking to a rheumatologist nurse later this morning, be interesting to see what she makes of it. Been more aware of soreness at top of spine, also feels bit swollen or bumpy like bone sticking out maybe, so will ask about that. Gp gave me some neck exercises to do back in May, haven't really made much difference. Think it could be cervical Spondylitis as doctor Google tells me. Seems to be an age thing. There's always something though isn't there?! Xx
To be honest I would rather take the advice from here where people have had the experience of the medication, pretty sure Doctors get a number out of thin air and I bet none of them have had these illnesses... hope you get sorted soon
I really think my problem was thinking that the "race to zero" was going to be a "silver bullet".
As I've reduced the prednisolone many of the pre-existing conditions I'd almost forgotten like an arthritic knee and an old elbow problem have magically re-emerged.
I've decided to just change the things I can. I'm watching my diet. Avoiding stress, where able, and a little gentle exercise ( When my golden retrievers aren't dragging me through the nearest bush !)
yes I do agree with you also at the lower dose the ankle problems seem a lot worse but the doctors drum into you get off them ASAP.. just can't seem to win lol when I was on about 9/10 mg I could walk my dog but now I have to pay a dog walker
Listen to your body - if it’s complaining then Professor Dasgupta won’t make you go relentlessly to zero. He always told me he’d like me to get lower but if I couldn’t get lower than
If you can get to zero - and many can and do - then that is good. But don't try to force a reduction because the PMR will always win. The slower you go and the smaller the steps the more likely it is you will get very low. But there are plenty for whom just 1mg, even 1/2mg is enough - but zero doesn't work. Ask HeronNS
Thanks to everyone for the input, taken it all on board and will hopefully stay at 2.5 or a little more if needed, don't see the point of struggling on lower dose and feeling like I have been what will be will be... many thanks all x
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hope for some expert advice please 
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