Hi Everyone! I had finaly tapered down to 1 mg. and have had no symptoms for quite a while. My lab work this week showed CPR 0.9 and sed rate was 5. My doctor said I no longer have PMR! I'm aware that the lab figures are not always a sign that PMR is no longer existant. My labs have always been on the lower side anyway, but not this low! Thanks to all of the different comments I have received, and I will continue to follow this forum. I was dx with PMR about 18 mos. ago and was practically crippled before I started pred. I still have somes of the side effects, bruising, thin skin, bleed easily, etc. but have learned to live with it! The best to all of you. (Yes, I'll keep in mind that it could come back at some later time)
Happy to hear there is a potential end for some folks.
Good luck in the future.
Awesome Elijo...just in time for summer!
Avoid carbs and rock on!
So happy for you. It give hope to rest of us. Enjoy every pain free day with joy and happiness
Woohoo! That’s great news!! AND gives others hope. Enjoy your improved health!
Oops, I meant to say that I was dx 2 1/2 yrs ago. Thankyou all for the nice comments!
That is wonderful! I love to hear stories like this... gives us hope.
Brilliant;so pleased for you
Great to hear some fantastic news! Be thankful you are a man as all 4 of my PMR men friends were off pred within 2 years and one was even off in 22 months and not one relapse. Avoid stress and rock on PMR free!!
That’s great Elijo, not bad going 2 1/2 years. Enjoy the new ‘you’ - long may it last.💐🍾🍸
You're one of those lucky people who skews the statistics towards the over optimistic " It will last for 18 months to 2 years" which enrages many patients who are still on Pred. five years down the line. Good for you and I do hope you stay lucky and it's gone for good.
Diana, Thanks for your good wishes, but whatever made you think I was a man? I am a mature woman married to a great man! Elijo (Elinor)
Hang on. You're still on 1 mg pred? Keep a supply of 1 mg tablets just in case. Don't want to rain on your parade but there are so many people who felt great at a really low dose (I was at 1.5 last year) and believed they were in remission. But in fact they still needed that last 1 or even .5 mg. I learned to my dismay that the drop from 1.5 to 1 was enough to trigger a relatively minor, but long lasting, flare. So it would be wise to do DSNS to zero, not stop cold turkey.
All the best and I really do hope you're ready to join Club Zero. Don't forget to post on the Zero pred thread!
Funny! Made me laugh! Congrats on completing your journey; best wishes to you!
Elijo, that's great! Just be cautious that some of us have had to taper even from 1 mg with 0,5 for a while. Like me you are at the shorter end of the treatment cycle. Since the median time for PMR is 5.9 years then half of us shake the monster in less than that, so congrats and stay well.
Oh Sorry!! I was getting muddled with Elijah which is a man's name!! Well, even better well done as you are female. Stay Fit!
I am trying to understand what is happening in our bodies at these very low doses to make it so difficult. (Just so I kind of understand if and when I get to those doses)
Does that mean our bodies are kicking in making most of what we need, but not quite enough?
I think there are two reasons. One is that PMR may still be active. As you know, pred doesn't cure anything, merely dampens the inflammation so we can have a life. The other reason is as you suggest our adrenal glands may take a long time to get up to speed. This is why we should carry a steroid card or wear a medical alert bracelet for a year after coming completely off pred. In case of accident or illness we might need a top up if our adrenals are not capable of making enough cortisol to handle the extra stress.
Ok. Thanks. So at a really low dose like1-2 It is kind of a safeguard in case we still have some PMR.../ or our body can’t make any or enough?
If we are able to get to 1-2, mg.. that must mean our body is making at least some I will assume...or we wouldn’t be able to go that low even if we didn’t have any PMR...
Thank you... and have a nice weekend