3rd attempt at tapering, should I report it to the doctor

[camshall]

So, having watched the podcast on YouTube via the link in yesterday's posts, should I be reporting to the doctor for a referral to a rheumy or just carry on without any medical intervention. There are so many stories of poor rheumy experiences I'm not sure about seeing one. I am currently on 3.5mg steroids, up from 3mg after 1 week on 8mg due to a slight flare just before a short holiday. Still have slight shoulder stiffness, mainly on the left very slightly in the right, hips ok. Can manage okay, lift right arm ok left requires a little bit of effort, which gets easier in the afternoon. Been on latest dose for nearly a month.,don't really want to increase any further but stay on current dose for another month. Any suggestions on what to do?

[PMRpro Ambassador]

You aren't heading relentlessly for zero - you are looking for the lowest effective dose, the lowest dose that gives the same result in terms relief of symptoms as the starting dose did. It sounds as if you had found it - 3,5, POSSIBLY 4mg if that works better. You find it by tapering to the dose at which symptoms start to return - and going back to the last good dose. Which is what you have done. Time to take a break from tapering - give it a few months and then try 1/2mg and wait a month or two to see if that still works - if it does you can repeat that step. No hurry, no forcing, no panic.

In the current climate in the NHS I seriously doubt you would get a referral to a rheumy for months and months. The desire for PMR patients to be seen by rheumies is outweighed by the practicalities of overloading the system with patients who are doing well and are not at risk - as GCA patients with visual symptoms. I don't think you need input from a rheumy - it is just down to patience and care now.

[camshall in reply to PMRpro]

Thank you for your reply and helpful advice, I will stay on my current dose for a few months and then try to get down another 0.5mg. Doctors don't seem to be interested so I'll go it alone with the help from this fantastic community.

[PMRpro Ambassador in reply to camshall]

That is often a decided advantage!!

[DorsetLady PMRGCAuk volunteer]

Slow your tapering down a bit would (like PMRpro) be my suggestion. Plus only one week at higher dose is not always enough -it’s okay to stay 2 weeks -and get flare completely under control.

There really is no rush.. if you keep going below the level your PMR needs it will keep reminding you! 😳

[camshall in reply to DorsetLady]

Thanks DL, appreciate your help and advice

[alangg]

I agree with PMRPro and DL - slow down! Far better to stay on a low dose for a while (if it is effective) than 'yo-yoing'.

And then taper by 0.5mg using a DSNS plan over 4 weeks and stay on the lower dose for another 4 weeks to be sure that it is still effective. This is the scheme that I presented to my GP and she was happy to prescribe accordingly. If your doctor is willing to do the same, stick with them and don't let a Rheumie get involved!

[Wizards]

I agree with all of the above. I'm off prednisone and for me I always used the Dead slow method and then stayed put for weeks if not months till I felt no symptoms and felt great.I never reduced if anything hurt. I constantly hear it's manageable. Not good enough. You will probably flare.

It's not a race but I know when your so low it's tempting to race. Don't!

Good luck