No More PMR! Hurray!
Posted , 20 users are following.
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)
3 likes, 30 replies
rocketman42 Elijo
Posted
Good luck in the future.
JanetGarrett Elijo
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Harrie4 Elijo
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Avoid carbs and rock on!
leef Elijo
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Bethune Elijo
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Elijo
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constance.de Elijo
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That’s great Elijo, not bad going 2 1/2 years. Enjoy the new ‘you’ - long may it last.💐🍾🍸
margaret01981 Elijo
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gillian_25383 Elijo
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diana21296 Elijo
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Elijo diana21296
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Twopies Elijo
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BettyE Elijo
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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.
Anhaga Elijo
Posted
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!
margaret01981 Anhaga
Posted
Does that mean our bodies are kicking in making most of what we need, but not quite enough?
Anhaga margaret01981
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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.
margaret01981 Anhaga
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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
Anhaga margaret01981
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I believe you would have no trouble knowing if your adrenal function wasn't returning because you'd have signs around 5 mg, or maybe even slightly higher, with unrelenting fatigue to begin with. My adrenal function was very slow getting up to speed, but with a very slow taper nothing got worse, and has been improving. If I'd continued to feel very tired and otherwise unwell I'd have asked my doctor about having the synacthen test.
Twopies Anhaga
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margaret01981 Twopies
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margaret01981 Anhaga
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Anhaga margaret01981
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That's an interesting question, I haven't really thought about it for a while. I remember when I was at 7 quite suddenly feeling completely flat. I even posted about it, it was so sudden and disturbing. I must be honest and say I can't remember how long it lasted. But there came a day when I felt quite energetic, I remember that too, and knew there was light at the end of the tunnel. These days were infrequent at first, but gradually became more the norm. It was a very slow process, really taking the best part of a year as I continued to taper, using an even slower version of dead slow taper. What I found happened quite often, less so now, but it still occurs, was how very tired I would feel after certain activities. Even a cheerful morning coffee get together with a couple of friends would wipe me out for the rest of the day. I still get fatigued, but recovery time is much shorter. And I also think I've adapted somewhat and simply unconsciously schedule in that bit of down time after a period of activity. Social activity can be as draining as physical activity, sometimes more so. But both are important for well being so I don't avoid them. I was on holiday at the end of April, beginning of May, two weeks of solid unaccustomed activity, using body, brain and emotions, and at first I wasn't sure how I'd get through it. In the end I had a wonderful time, wouldn't have missed it for anything, and after the first couple of days was able to keep up with everything and thrived. So some of the "fatigue" I feel at home is undoubtedly all in my mind, because I don't want to do housework and I want to shirk all my responsibilities.
Anhaga Twopies
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Twopies, I mistakenly "replied to Margaret, see my reply to her.
Anhaga margaret01981
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margaret01981 Anhaga
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It is all good information. Right now in this journey, fatigue is the hardest part of it for me. Before PMR, I could go long days without fatigue so it does take some getting used to. 😀. It is better now though and I think the iron helped. My blood test did show some anemia. The prednisone is taking care of the pain, and I haven’t had any major side effects from the steroids. I recently reduced to 10 as my pain is gone! Going that journey to 7 and below will be interesting when I get there.