Stuck at 3mg

[Sanekate]

Feeling disheartened at not being able to get below 3mg - I have been stuck here for 6 months, and whenever I try to reduce, I flare. I'm caught between a rock & a hard place as I have also been diagnosed with a scary malignant melanoma, and the immunotherapy treatment (which I have not yet been prescribed) is inhibited by steroids. In fact, it is known to provoke autoimmune conditions even when there were none there, and to make existing ones worse. Anyone on here with experience of PMR and MM together? Or just with an encouraging reducing-after-being-stuck story?

[DorsetLady PMRGCAuk volunteer]

Have to say if you were only diagnosed with PMR in summer of 2021, then you have done very well to get as low as 3mg in such a short time...many would be delighted at that.

Suggest you just stay put for time being, stop worrying about reducing, you will be able to do it in future, and when you do maybe try a slower tapering plan - see links for couple of versions - and try by 0.5mg (if you haven't already)...

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Sorry can't help on the MM side of things...

[Sanekate in reply to DorsetLady]

Thanks so much for the reply - it's the MM that is driving the rush to reduce. They won't give you immunotherapy if you are on pred. MM is making me long for the time when PMR was my chief worry!

[DorsetLady PMRGCAuk volunteer in reply to Sanekate]

Fully understand - between the devil and deep sea! Best wishes you can get appropriate treatment asap.

[Sanekate]

Thank you 🙏

[PMRpro Ambassador]

Looking at it as having identified the endpoint you are aiming for when titrating the dose is a more positive view than "being stuck". You aren't heading relentlessly for zero, you are looking for the lowest effective dose that gives the same result the starting dose did. Yours is 3mg and to be there after 15 months is excellent - the median time to 5mg is 18months, you are well ahead of the curve.

I do appreciate the desire to get off pred for the immunotherapy but all that will do is bring back the PMR, with or without the immunotherapy. My SIL had malignant melanoma before the option of immunotherapy, the first was removed and I think she had a couple more removed later but lived well for years - and it wasn't that that killed her.

[123mossie]

Yes, I got stuck at 3mgm and had to pause for about 6 weeks before attempting a slow 0.5mgm. taper using the dsns method, often adding another week or two in to make it even slower. I had to pause again after that but I did eventually get down to 0. But I didn’t have MM. have you had a chance to discuss things with your oncologist? There may well be a threshold of steroid dose that doesn’t affect the other tx.

[Louisa1840]

Dear Sanekate, it has taken me five and a half years to get to 3mgs daily so you are doing really well. I too seem to be stuck. Any reduction causes a flare. I do understand your need to come off entirely though. Good luck!!!

[pilgarlick]

So sorry to hear that you have another medical problem to deal with. I was diagnosed with GCA six years ago now, and, although I managed to reduce my pred. to 5mg fairly quickly, I haven't had much success in going lower. At least six times, using the slow technique i.e taking seven weeks to reduce the dose by .5 mg , I have succeeded in getting down as low as 3mg. But, on each occasion, returning symptoms have taken me back to 5mg, on which I stay for a month or two before trying to reduce again. The chance of getting any professional advice these days is precisely nil, so I am quite happy to follow the advice here and on other internet sites. It seems that a dose of 5mg or lower is not a long-term problem and I am rather reconciled to continuing my regime for the rest of my life. As I'm over 80, I don't think it's much to worry about.

[PMRpro Ambassador in reply to pilgarlick]

Even with tocilizumab my rheumy isn't aiming for anything better than 5mg. And I'm "only" 70,

[SusanEleven]

I hope my story is encouraging. I was at 4mg for an entire year. I could not go lower. I’m not sure how to accurately describe it but I eventually developed a feel for when the time was right. I went down *very* slowly and over time made it to 2mg. I’ve stayed there (except for two flares in the last few years that each only required an increase to 5mg for 10 days). I’m getting that “feel” again so may try another reduction.

Also, I know your situation is different but I did want to mention that my endocrinologist and rheumatologist are fine if i stay on my low dose forever.