Advice please on tapering

[Markandevie]

Good morning,

I was diagnosed with PMR 18 months ago and have been on a bumpy journey but have managed to taper off prednisone to 1 and a quarter daily taken at 3 am every morning. My issues is with the joints in my hands, wrists and elbows ( all bi-lateral pain) which continue to be painful for a few hours each morning. The past few days I am feeling particularly stiff and achy and wondered if I need to increase my dosage. I am being pressured by my GP to get off steroids quickly and am having trouble getting these on prescription as he feels I should be off them.

I know no one in their right mind wants to continue on steroids but the thought of ever having the pain of PMR come back fills me with dread and would rather stay on them until I wean myself off by a quarter every 2 months.

I am not sure what I am after from you but just wanted to put it out there.

Thank you

[DorsetLady PMRGCAuk volunteer]

To be at 1.25mg within 18 months is pretty quick… even if your doctor is one of those that believes in the ‘PMR only lasts 2 years’ brigade. It may do for some, but there’s a lot that it doesn’t..as we will know from here.

Would suggest you treat as flare, [as explained in link] provided you have enough tablets - and then drop back down to a slightly higher dose than 1.25mg… say 2 or even 2.5mg.

healthunlocked.com/pmrgcauk...

Is there another GP in your practice that might have more knowledge of PMR - or at least a more sensible approach to it.

See these -

pmrgca.org.uk/pmr-myth-bust...

healthunlocked.com/pmrgcauk...

[Markandevie in reply to DorsetLady]

Thank you. I have some 5mg so I will try 2.5 and see how that goes

[PMRpro Ambassador]

A study found that the median time to get from 15 to 5mg was about 18 months. You are well ahead of the curve.

Your GP may want you to get off pred asap - but he isn't in charge, the PMR is. It hasn't burned out yet, as is obvious from your symptoms, and if you reduce even further, it will get worse and eventually you run the risk of being back where you started. Ask him what he would do then - just leave you to stew? If they want to diagnose a patient with PMR, then they also have to be willing to manage the symptoms in the only way that is an option in the UK: with enough pred to manage the inflammation at any stage.

You could suggest your GPs visit the charity site and even join - it is free. There there is a set of myth-busting articles by a leading rheumatologist in the field - including one about the 2 year myth. Something like 2/3 of patients with PMR need pred for longer than 2 years - you have done really well so far, don't let them spoil it.

[Markandevie in reply to PMRpro]

You are right, I am not going to get pushed around and carry on with my quest to get to nothing but if it takes another year or longer then so be it. I am not going back to them initial symptoms thats for sure.

[Markandevie in reply to Markandevie]

At last I have had a conversation with a GP that actually listened and supported me. I have been advised to increase to 3mg for a few weeks then decrease to 1.5 and start again. Just thought I would share the good news.

[PMRpro Ambassador in reply to Markandevie]

Great - I hope the small increase is enough. We think a bigger increase bit for a shorter time probably achieves more since the longer you are at a higher dose, the harder it may be to get back to the old dose. Two weeks isn't long enough to suppress the adrenals again but by 3 weeks, it may be.

[Markandevie in reply to PMRpro]

Thank you and I will keep it going for 4 weeks then take a drop.

[DorsetLady PMRGCAuk volunteer in reply to Markandevie]

Would suggest a drop to 2mg rather than 1.5mg as that is where you had your issues… if it happened at that dose once there’s nothing to say it won’t happen again. As many have found half a mg, even a quarter, really can make a significant difference at such low doses.

Plus you are less than 2 years into PMR… and whilst many males generally [although not always] fare better than females, at the risk of being boring and sounding like a broken record, there really is no great rush to get off the Pred. 😉

[Charlie1boy]

Hi,

Just to give you a bit of context, and I know we are all different, but it took me over four and a half years to get from my starting dose to 2mg. Also, initially I did not have any pain in my wrists or hands, but these did kick in after two and a half years on pred when I was at four mg. I was advised at the time to increase to 7mg, and that worked perfectly- all pain in that area cleared up in 24 hours.

Methinks patience is required, and a lot of it. I was lucky enough to be allowed by my GP to manage on my own taper, and my golden rule to avoid a flare was just to listen to my own body. Having no pressure from a GP helped no end.

Good luck.

[Markandevie in reply to Charlie1boy]

Thank you. Patience is the key I know that but my word its hard!. No idea where this PMR came from and no idea when it will end.

[Charlie1boy]

Join the club! I’d never heard of it when diagnosed, and had to ask the GP to repeat it more than once, so I could write it down.

Not a lot of fun.

[Daffodilia]

Try a different GP?

[Perigrina]

I have been off pred for 5 weeks. lower arm, wrist and hands started aching as I tapered on lower doses. I thought I might have carpel tunnel syndrome (many people with pmr seem to get it). As I was travelling I could not seek medical advice and started CTS Exercises (from the web) and a splint at night. I repeat them 3 times, several times a day and it helps during the day although I still wake to stiffness and aches. I have been doing this for a month. Not cured it but managed it.

[Markandevie in reply to Perigrina]

worth a try.thank you

[Chiqui1950]

Dear Markandevie, I do hear your concern--- The wisdom in this forum is/ has been my guidance---- and also an opportunity for me to listen to my body----it has been hard for me because I want to heal quicker--- I am 5 years into this journey and at 3 1/2 now----but I am accepting that my body has its own journey to healing and I can help it with gentleness and acceptance. My best wishes to you!

[Markandevie in reply to Chiqui1950]

Appreciate your kind words