i am 20 months into PMR taking 8 mg daily...feeling "stable".
Problem is that After resting I only have so much social "energy", meaning that when I am in a group socially, especially at night, I become lethargic....I even wonder if my eyes glaze over....I have no energy to contribute to the conversation. Will that energy return when I am on the lowest dose of prednisone?
Mine didn't it got worse the lower the dose but the head sweats meant I could not go out anyway. Total risk of pneumonia for a start and very antisocial! If they come back I will definitely consider jumping I. The lake.
Providing your adrenal glands are able to resume producing cortisol (the body's natural corticosteroid) you should do. You are just at the stage of that having to happen again and if you body is being a bit slow in taking up the challenge you may well feel more fatigued now than you did at higher doses.
Whether they are going to be able to do so is something that can be checked with what is called a synacthen or ACTH stimulation test - they measure cortisol levels before and after a stimulationg injection (done at 9am) to see if they produce what they should. It can be done why you are still taking pred, the results just have to be interpreted a bit differently. Do ask your GP - endocrinologists have said they think it is a test that should always be done at about this dose, it would save problems later.
I wouldn't do that if I were you, it's very chilly at this time of the year, and the worst of it is you can probably swim!! 😃
Anyway, we would miss you.
Have a good, pain free weekend.
I'm down to 4mg/day, Between reduced pred level and exercise from coronary rehab which has returned a good level of fitness I have heaps of physical and mental energy. Most of the pred side effects had faded by 5mg/day, before coronary stuff but still low energy.
Actually swimming is the one thing I really cannot do anymore. I was a keen swimmer before PMR now I just sink like a stone. I think. It may. Be to do with the water retention. My legs are four times the size they were before Pred
My rheumy (and you know what I think of her) the last time I saw her (and hope it`s the last) handed me a piece of paper and said, the next time I see you, I want you down to 5mg....( I`m at 11mg right now)..and one morning when you are, don`t take the pred have this blood test...and it`s the ACTH which you mentioned above.....she`ll have a long wait...because I`m doing it very slow....much slower than she wants....
I have to say though PMR is a very puzzling condition to me...inas much that some people can do exercises...walk distances, others even on pred like myself...struggle with everyday life...it never makes much sense to me, only that we are all different in what we respond to and react to....people keep saying to me...if your`e on 11mg why isn`t it giving you lots of energy and why do you get side affects after all this time (4 years).....I just don`t have the answers
I, too, find life challenging and find it difficult to walk any distance, let alone exercise on a regular basis. I rarely have motivation to do things and when I do, I tend to overdo. I'm almost 2 yrs. into PMR and am currently taking 9 mg. of pred. to which my rheumy is constantly tellling me to reduce, reduce, reduce. I got down to 8.5 mg. and had a flare so am back up to 9 mg. again. I don't have the answers nor does my rheumy!!
Thank you. Will be home for a few weeks at Christmas...will ask my rheumy for the test. What problems will it save later? He will not like it that I am stuck on 8 mg for so long.
Part of it may be that people who are a lot fitter to start with remain able to do more. There is no question that doing what exercise you can does help manage it. In the first 5 years I was at the gym every day for an aqua class and it was much better for the rest of the day. When I moved here it wasn't an option and other problems came along to join in but even now I feel a lot better when I've been out and had a good walk. If I do a longer walk I notice it the next day but not badly.We do try to walk for 1/2 hour every morning and I notice when we miss.
There are things I've always been able to do quite comfortably - but housework is the end for me. Any bending/reaching to clean something, you know what I mean, and my back just goes into spasm. It's far better than it was but still lurking. Good excuse not to use a broom or the vacuum cleaner!
Some side effects don't go away just because you've been on a medication a long time, some do. Like everything to do with PMR, everyone is different.
Hi Julian, it's really heartening to hear you say the side effects fade at 5. I will look forward to this! This week, I became really determined, due to the last 4 months of exhaustion, to try build up some strength again, without doing too much and experiencing a flare. So I think it's worked so far, though just 1 week so far. Bi-daily, half hour brisk walk, daily if possible. Bi-daily, 10 sit ups, 15 arm pulls, 15 arm pushes and 5 mins on the walking machine alternating fast/slow bursts. I've also started ginseng as apparently it stimulates the adrenals. Plus nettle tea which provides faster uptake of vit c. Will keep you all posted on if it works. Also started herbal water tablets, which seem to be reducing my bloated face and tummy.
To Katy at 20mg, I had a strange mixture of frenzied energy levels as well as exhaustion, and the exhaustion has worsened when I got down between 9 to 7 where I currently am. I agree it's the adrenals struggling to take back their job that might be the cause.
Keep up the good fight!
Don't be disappointed if they don't fade - everyone is different.
Do be careful with ginseng along with prednisone - even herbal sites recommend care as it can affect blood sugar levels and make them rise. The same applies with the herbal water tablets.
I know - I'm a miserable old git sometimes but it is all about being safe.
Last paragraph! And wouldn't we all be in a mess if you didn't put us in our places?
I'm a glass half full girl really
Funny, mine's nearly always half empty. Cheers🍷
As I`ve said before...it mst be a Linda thing!....my rheumy uses the dreaded r word...but what can we do, when we reduce and we keep getting the flares!
No it s not a Linda thing, it's a PMR thing. I'm 4 years in now and on many days I have to struggle to excercise, even a half hour walk shatters me sometimes. PMR hit me quickly. From being a very active 72 year old I became an old lady within just a few weeks. And now, at 76, I keep waiting for this miraculous "PMR just fizzles out" attitude of the Rheumies to kick in.
Keep fighting and hoping. We'll get there sometime.
Hi Eileen, absolutely appreciate your feedback, and will monitor how it goes with ginseng and water tabs. I've just had enough of feeling dominated by these awful drenching sweats day and night, exhaustion, bloating, weight gain, and feel it's important to keep trying to not loose my old self completely by giving in. I'm keeping a daily lives g to chart any progress, so will let you all know how it goes.
To Kathy; my exhaustion did worsen when reducing, most noticeable from 9 and below. At 20mg I recall I had muddled thinking and out of control emotionally. Take good care of yourself to get through it.
Accepting our new limits is sometimes difficult, but I am treating myself with new, more sedate ways of enjoying myself. Go for fun things not the lake. I have always been a shrinking violet, but I have now got floaty cotton scarves so I can mop my sweaty brow. My glasses are more often perched on top of my head, when I am out, as foggy lenses are a real give away that i am having a head sweat. I probably look more like Aunt Acid (a cartoon character I love), but I prefer to imagine I'm Audrey Hepburn. Lets not let this old age stuff get us down ! Pineapple juice seems to keep my fluid retention down.
Once again your story is the same as mine, 4 years in with PMR...and really struggle,
I have had ME/Fibromyalgia for over 20 years, so know it`s not going to just go easily with me......and exercise is out of the question, I am often housebound for days at a time.....my struggle is with the Pred itself, I have never been able to tolerate medication of any sort since getting Fibro.....like you say Linda, we`ll get there!