Nightmare

[cazhew]

I was diagnosed dec 2019. Only just worked out how to use this forum. I sent a message six months ago and couldn't find the forum for replies....not tech savvy!! Anyway I'm on 10mg of predicted and have been since beginning of December. Im still in pain and my joints crack and hurt. I struggle to get to standing from sitting. Gp wants me to reduce to 9mg in a couple of weeks. Is this normal. Ps. I don't work and am sheilding.xxx

[Charlie1boy]

Hi,I shouldn't really comment on what your GP wants you to do, so I won't!

Suffice to say that if It was me, I would not think of reducing if I was still in pain. Indeed, it sounds from what you say that 10mg is insufficient to control the inflammation and maybe you should consider increasing. Others will be along to provide more specific advice. If in doubt, you should talk it over with your GP..

Round about 10mg can be a difficult period with pmr - it certainly was for me

and it took me six months to get from 10 to 9mg.

Not everyone is the same though, and ultimately you may be more fortunate.

Good luck

Paddy

[cazhew in reply to Charlie1boy]

Awww thankyou so much. Xx

[PMRpro Ambassador]

I could say something rude about your GP. I won't. You are almost certainly on too low a dose NOW, the last thing you need to do is reduce any further,

You say you are still in pain - have you ever NOT been in pain? Or at least, at least 70% better than you were pre-pred?

[cazhew in reply to PMRpro]

No. On initial doses it went bit then came back ive been in so much pain ever since. Every day. I hobble like an orangutan!!!

[PMRpro Ambassador in reply to cazhew]

What dose did you start with and how did you reduce the dose - please tell us those sort of details too so we can comment usefully.

I've just looked back at your original post:

healthunlocked.com/pmrgcauk...

If you didn't manage to find it and read it then then do so now - before we repeat what we have already said then. By the time you posted that you were obviously already at too low a dose - you should never be in that much pain to need other painkillers - the pred acts for pain management of PMR symptoms.

You need a different doctor who has some idea of what they are doing - because at the moment you don't. A great deal of the problem is because you reduced too far too soon and now it is out of control.

[cazhew in reply to PMRpro]

I can't remember what I started on but had been advised to drop by 5mg then when I got to 15mg I had to go down by 1mg on alternative days 15mg then 14mg. For a week then stay at 14mg for a month and so on. But because of lockdown we have only spoken on the phone once a month. I have been in pain so have increased and decreased a lot myself. Obviously not knowing the full extent of the damage that does. Ive been to doctors last week as I developed cushingoid symptoms and saw an agency doctor. He made an appointment for bloods but I asked my own gp if I should cancel as we went into tier 4. I accepted this as he said it wasn't cushings it was cushingoid due to me yo yo ING my steroids. Im now on 10mg since first week in January and to stay on that for a month. Also if I have too much steroid it kicks off my arterial fibrillation. Ive had that for 8 years but only diagnosed in March when it got worse. I now have a cardiologist and on tablets for it. Im also on 175mg thyroxine. Ive got my next phone appt on 20th January so I will discuss these issues with him.

[PMRpro Ambassador in reply to cazhew]

It isn't due to the yoyoing - it is just pred. Try cutting your carbs drastically, especially processed ones and added sugar. You may have some of the fat face bit but it should be a lot better if you control the pred weight gain/fat deposition.

Funny - I have a/f too but caused by the autoimmune part of PMR and I need the dose I am on or the a/f gets worse with lower doses. What does trigger my a/f is a G&T!!!! No G&T and the episodes are far fewer and shorter. Magnesium also helps - and pred makes you low on magnesium.

[cazhew in reply to PMRpro]

Xxx

[DorsetLady PMRGCAuk volunteer]

Hi again,

See you managed to find us!

As others have said - GP needs retraining! Or even training....

PMRpro has asked what I would have....but will just reiterate you need to explain to GP how difficult things are....and maybe suggest an increase in steroids rather than a decrease.

Sounds as if you’ve never got the initial inflammation under control, so you may be one that needs more than 15mg. Other health issues may not help either.

[cazhew in reply to DorsetLady]

Thankyou so much. I feel like crying with relief!

[piglette]

Rule of thumb is if you are in pain DON’T reduce, STOP where you are.

[Daffodilia]

Don’t reduce TIL pain bearable

[PMRpro Ambassador in reply to Daffodilia]

I'd say better than bearable!!

[Pollynolongerinagony]

hello pugwash, I feel so cross you have been put through this unnecessary pain, but you will get excellent support and advice on this forum, I am a techno phobe too, but you will soon find your way around here. This is a long and winding road, but you are not alone, experts and members will help you on your way, together , best wishes Polly.

[cazhew in reply to Pollynolongerinagony]

Thankyou Polly.xxx

[Sandradsn]

If you are in pain on current dose,don't reduce,it's your body .I sacked my previous gp as she nagged me to drop dose everytime I saw her.