Club Zero - I think...

[Littlesky]

Hi all. It’s 18 months since I began Pred and 4 months since almost zero turned into a flare that sent me back up to 5 mg briefly. I’ve now been at 0 for about 6 weeks. Slightly achey in the morning but it goes away on its own. I’ve also been in a far-away time zone for the past couple of months so some major jet-lag stress. Still feeling pretty fine. Can I report I’m there yet?

[SheffieldJane]

Things are looking good. Like you however, I would be cautious. 18 months is a short period to have PMR. 6 years is around the average time. Good luck! Keep us posted.

[Littlesky in reply to SheffieldJane]

Right. I did live with the beast for around 5 months before dx, but still it's only been two years all-in. Not celebrating yet - just smiling more.

[DorsetLady PMRGCAuk volunteer]

Maybe, I do hope so, but bearing in mind the short time frame of your treatment and previous occurrence don’t shout it from the roof tops yet!

Look at this - something I highlighted recently -

Because relapses are more likely to occur during the initial 18 months of therapy and within 1 year of corticosteroid withdrawal, with a frequency of approximately 50%, all patients should be monitored for symptom of recurrence throughout corticosteroid tapering and for 12 months after cessation of therapy.

Relapses usually occur when the dose of prednisone is less than 5.0-7.5 mg/day or after therapy has been discontinued. If symptoms recur, the corticosteroid dose should be increased to the dose that previously controlled the symptoms. Recurrences of the disease more than 1 year after discontinuation of corticosteroid therapy has been reported.

Approximately 50-75% of patients can discontinue corticosteroid therapy after 2 years of treatment. However, some patients may require low doses of corticosteroids for several years.

[Littlesky in reply to DorsetLady]

Thanks so much for this reminder. And I still do wake each morning with a little ache in the hips - just not enough to require medication. It's gone within 1/2 hour on its own. But no shouting from roof tops yet!

[DorsetLady PMRGCAuk volunteer in reply to Littlesky]

Sounds hopeful.

[Grants148]

I sincerely hope so ,keep posting to let us know how you are,Good Luck !

[Hollyseden]

Sounds good. Fingers crossed for you. Keep us updated. Love to hear of someone reaching Club Zero

[Littlesky in reply to Hollyseden]

Thanks, I will!

[PMRpro Ambassador]

Early days but it is sounding hopeful!!

[powerwalk]

Good luck. Hope it goes well.