DSNS Taper Question

[skipspmr]

PMR started 3 years ago. DSNS taper staying at low dose for 4 weeks. At 2.5 now for 2 weeks. When waking pain in shoulders and hips which quickly go away after moving, stretching, or getting up. So. I'm thinking. Ignore? Stay at 2.5? Reverse taper up? Go to 5 temporarily? Switch from prednisone to vodka?

[DorsetLady PMRGCAuk volunteer]

Two options -

Stay at 2.5mg for another couple of weeks,

Switch from Pred to vodka🤣😂🤣...maybe!

[PMRpro Ambassador]

Definitely stick at 2.5mg for now. If it gets worse over time you may need to go back up but it may improve. It is a low dose with few risks - Prof Dasgupta told us a few months ago that he keeps patients at that level indefinitely as it reduces the risk of relapses. No hurry - wait for spring

Vodka? Maybe, maybe not. I wouldn't recommend it - but then, vodka doesn't float my boat in any shape or form!

[Daffodilia]

Vodka

[HelenDaisy]

Wine.

[Manchild]

Bourbon please.

[ZenZen]

I'm in a similar place, but at 5 mg after one year. My rheumy prescribed 200 mg hydroxychloroquine daily in addition to pred, and after 3 weeks it seems to be working to reduce pain. We'll see how it goes once I go down to 4.5 this weekend.

[PMRpro Ambassador in reply to ZenZen]

Why the rush? More than half of patients take over 18 months to get to 5mg - I don't understand this desperation to add unproven drugs with their own side effects when the patient is already at a low dose of pred.

[ZenZen in reply to PMRpro]

He seems very set on getting me off of it asap. Perhaps I should seek the opinion of another rheumatologist!

[PMRpro Ambassador in reply to ZenZen]

He'll only get you off it when the PMR allows. I don't get why they diagnose PMR and ignore the realities of the illness and its management: It lasts at least a couple of years, a median duration of management with pred of just under 6 years and the only option besides Actemra is pred. And there there is rather a difference in price and availability ...

[TabLock55 in reply to PMRpro]

My rheumatologist says 95% of her patients don't experience PMR symptoms after 1 year on prednisone. I've been on prednisone for 18 months and now at 3mg/day, all my symptoms have returned. Doc says it's not PMR because my blood work shows no inflammation. I only know I feel the same way I did 18 months ago. Seems most people on this forum have had PMR much longer than a year.

[Constance13 in reply to TabLock55]

I wish! I've been on Pred for 8 1/2 years and still very much "experience PMR symptoms".

Your rheumie is the average one, ie "no knowledge of PMR!!!

[PMRpro Ambassador in reply to TabLock55]

Not sure what world she lives in - can't have many patients or she can't diagnose PMR very well!!! You might not have raised markers now - but they do often lag behind and it will come.

[Sasol]

Tapering but chest pains nausea have you experienced it too

[skipspmr in reply to Sasol]

No. Hangover once in a while.