Advise/Experience gratefully accepted

[Janieb293]

Hi all, I really appreciate this forum and although I don’t post often I am always reading. Anyway, at my last visit to the hospital, the dr told me to reduce my Pred, a mg a month which I have been doing. I was on 10mg which was just keeping my PMR under control. I am now at 6mg and all my body hurts, I’m stiff and for the first time since I first started taking Pred, the stiffness in creeping around my back, neck and shoulders. I don’t see the consultant until after Christmas and don’t know what to do. Do I continue to reduce and live with the pain and misery, you all know what I mean, or do I go to my GP and get my Pred put up to a higher dose again? I have no idea what to do as it was the rheumatologist who told me to reduce. Please help! 😊

[DorsetLady PMRGCAuk volunteer]

Hi Janie,

No point in reducing any more, your pains will just get worse. Either ring your Rheumy department or see the GP - explain the problems and say you need to increase Pred to get your symptoms back under control. Hopefully going back to 10mg should do it. But don’t think about reducing again until you are absolutely sure you are back on track.

Discuss your tapering with whoever, and maybe suggest 0.5mg tapers in future, or at least give you the option of managing your own reduction plan rather than rigidly follow one that is not working for you!

Good luck.

[Janieb293 in reply to DorsetLady]

Thank you so much for your advice, it’s so much appreciated and fantastic to have the wisdom of others to lean on. I never seem to get anywhere with hospital or GP’s. I had a hip X-ray this time last year as I could hardly walk. The GP told me that my hips were fine, I had no pain when I started on the Pred, now the rheumy tells me I have osteoarthritis, so I find it all so confusing! Sometimes I get the impression that they don’t really have a clue!!! Anyway, thank you for your help, I will be taking your advice. 😊

[DorsetLady PMRGCAuk volunteer in reply to Janieb293]

So agree about GP Rheumie and misunderstood illnesses. Even though we need the first two I think once we gain confidence in our own abilities we manage much better in dealing with the illness.

Most people over 50 have arthritis (OA) according to my reasonably sensible GP , it’s just in some it hurts and others it doesn’t. Wish I had the sort that didn’t!

Take care

[SheffieldJane]

I have hit the same brick wall at 6 mg. Dismaying isn't it? Do not live with the pain and misery, if this is a flare then it can only get worse. When I was reducing I think I was better on 7 mg. perhaps we could creep back up and see what level we obtain relief at. At this rate we won't be able to lift the turkey or do anything at Christmas. I am going to take DL's advice and once I am stabilised I will do my dead slow reductions 0.5 at a time. I was diagnosed 19 months ago and started on 20 mgs that had the miracle effect. Gosh this can be wearing! Like dragging a ball and chain around.

[Janieb293 in reply to SheffieldJane]

Hi SJ, thank you for your reply, you are certainly right, this is like dragging a ball and chain!!! I get so confused with what to do...Thank goodness for this forum!!! I am also going to take DL’s advice, I need to be raising a glass or two at Christmas as well as the turkey!!! Good luck 😊

[CT-5012]

Hi, I too am 19 months into dragging my ball & and chain around as Jane says. I too listened to my Rheumy and had a massive flare as a result, I have just finished my first week of DSNS reducing from 10 mg to 9mg and so far am OK Listen to your body only you know how you feel. Rest as much as you can and do something you enjoy. Best wishes.

[Janieb293 in reply to CT-5012]

Great advice, thank you so much! Seems to be a really misunderstood condition! Good luck on your journey x

[PMRpro Ambassador]

If 10mg was just keeping things under control - that is where you should have stayed. It sounds as if your rheumy really doesn't know much about PMR - and why has he decided it is OA not PMR?

The pred didn't cure the PMR - at the right dose it is clearing out each day's new batch of inflammation. Too little - and the inflammation isn't all gone and mounts up like the dripping tap into a bucket eventually fills it.

Good luck getting the GP onside - and if he won't help, try others until you find one who will.

[Janieb293]

Thank you for your reply. I have no idea why he decided it was OA, I was pretty shocked having been previously told my hips were ok. I do wonder sometimes if they just want me out the office!

[Rugger]

This summer I was merrily reducing at 1mg per month, but when I got to 4mg I had a flare! Back up to 10mg to sort it out and now I'm at 7.5mg, reducing in 0.5mg stages this time and LISTENING TO MY BODY!

Click on my name to see what happened in graphical form.

See your GP and nip this in the bud, so that you will be able to enjoy your wine and turkey at Christmas! Good luck.

Me: PMR for 18 months

[Janieb293 in reply to Rugger]

Many thanks 😊