In Remission

[Amber1414]

I am so excited to say that after 3 years I am in complete remission with my PMR. My SED rate was 25 when I went in for testing. It was a long three years. Now I am slowly tapering off the Prednisone and can't wait to be done with it as well.

[DorsetLady PMRGCAuk volunteer]

Hi Amber1414,

Good news. But the real acid test is when you come off Pred - and have no return of symptoms.

I ”felt“ my GCA had gone into remission, but wasn’t 100% sure until I’d finished the Pred and was symptom free.

Hope you are too.

[micheleinnaples]

That's great news! Sending you continued positive thoughts and well wishes!

[HeronNS]

Great!

[PMRpro Ambassador]

Who said the PMR is in remission? Your doctor?

Sorry to pour a damper on things - but the only reliable test to say PMR is in remission is when you stop the pred and the symptoms don't come back! If you are still on pred your ESR SHOULD be in normal range - if it isn't you aren't on enough pred. In fact, you should stick at the starting dose of pred untilthe ESR is not only in normal range but also as low as it will go. Only then should you reduce really. If my ESR were 25 I would be in trouble - my normal is about 5.

[Amber1414 in reply to PMRpro]

Thank you

[Hidden]

If your ESR was 25 now, I would still be a little concerned. Sorry to put the damper on things but PMRpro is right, you will only know when you are off pred for some time.

PMR has the habit of biting us in the proverbial.

Pete

[Amber1414]

Thank you

[Hindags]

Amber 1414... Hey, I am assuming that 25 ESR is in the low range for you. So congratulations on achieving that. Do you feel better? Out of pain? Not likely to hurt if you haven't over worked your PMR hot spots. If you feel better and are less reactive to stress, physical and mental, I think you might well be on your way to remission. But, as others have said, you still need to taper slowly on the Pred and wake up those adrenals before it is over. How much Pred are you taking at this time?

But still reason to celebrate.

I just checked my medical record back to 2007. All my ESR numbers were in the upper 20s. Early on with PMR last Dec. I was at 107. I've been in the upper teens to low 20s since last April. But I'm between Pred 8 and 7 now. I have a ways to go.

I'm not counting on it ever being "over" in some ways. PMR will always be there, in my life, in my outlook and in my body in some ways. I've learned a lot from PMR and this community. It is a crazy journey and how I live it is what counts for me, one day, one taper, one dose at a time. Patience.....

[Amber1414 in reply to Hindags]

Thank you so much! I am at 8 mg and only reducing by 1 mg a month. I feel great with the PMR but have other issues going on. I have been on vicodin and oxy for 9 years for complications from back surgery. I recently had a procedure the help with that pain and am now reducing those meds as well. I have gone from 40 mg of oxy twice a day to 20 twice a day! I reduced the vicodin from 30 mg twice a day to 20. I will go down to 10 mg of oxy next month. It is so exciting to be pain free in my lumbar area after being miserable since the 80s. Trying to figure out if the PMR or chronic pain was worse!

[Sandy1947 in reply to Hindags]

Very well put! Learning to live in the slow, cautious lane is an important PMR lesson! Happy New Year! I’ll be in bed by 8!