Fatigue is getting no better the lower I reduce
Posted , 9 users are following.
I am currently on 6 days at two and a half pred ,I am in no real pain just the aches of getting older I reckon ,I manage to get out of bed ok but the tiredness is really getting me down , I just don't seem to have the energy to do anything at all , I've suffered with fatigue pretty much all through this journey but now it seems to be getting worse . I still wake up through the night sweating but this could be menopause the sweats have never stopped for me and I've just gone 60 and lately my nostrils have been very dry on and off even though I haven't had a cold or anything, it's quite frustrating. I enjoy reading people's discussions on this forum as I realise I have a lot of things they are talking about , I've recently been suffering from sore feet when I walk especially first thing in the mornings so was interested to read other people suffer from sore feet too this illness certainly has a lot of things I'm sure the rheumatologists don't know about or they don't tell you ha ha , I just want to feel normal again though I have never been as wiped out as this before .
Thanks for listening best best wishes everyone
Molly
0 likes, 22 replies
Anhaga molly1957
Posted
Yes, I have dealt with fatigue, and sometimes under certain circumstances, it can feel bone crushing. I have been at 1.5 for a while and I'd say things are getting better, but it doesn't take much to tire me out! I think my recovery is getting faster, though. Slow going, but onward and upward!
Anhaga
Posted
Twopies Anhaga
Posted
How long have you been at 1.5? I'm trying to figure out how everyone copes with the correct dosage to manage their symptoms...thanks!
Anhaga Twopies
Posted
I had just tapered to 1.5 when I had my last checkup with doctor in early June when she told me to use up the rest of my tablets then stop and see what happened.
I did try to taper using dead slow method but it was too soon for me to try, symptoms returned and got worse, and I have decided to stay at 1.5 a while longer. Saw a different dooctor today who gave me a prescription for enough pred to last maybe six months or more, so now I really feel I can take all the time I need. Tapering has become more difficult as I get lower. I got from 15 to 3 in something like a year. Then it took another year to get to 1.5. But happily it's been a steady downward movelment, which goes to show that slow really does work! Right now I'm thinking I really am at the level which mostly controls the symptoms, I don't think, this time, that it's pred withdrawal. But I will try to taper again in a couple of weeks if I continue to feel well.
EileenH Twopies
Posted
You can't really say - everyone is different. Not only in the dose they need but also in how long they need to stay at any given dose. There is no definite evidence, but the impression I get from observing the loads of patients I have contact with via the forums is that the activity of the underlying cause of PMR, an autoimmune disorder, may start off quite active but then over time that activity fades. As it fades they are able to reduce the pred dose because the amount of inflammation caused also reduces.
The speed of that is unpredictable - as is what dose is needed to manage it because different people react differently to pred and the amount they absorb, a measure called bioavailability, varies somewhere between about 50% and 90%. Unless it is measured - you cannot know where on the scale you are. And in everyday medicine it isn't measured. Plus - how long does PMR last? How long is a piece of string? I have had PMR for 13 years - others only 2 years, or 5 years. And in the 13 years my PMR has flared badly at least 4 times - requiring a return to a higher dose and retapering. It would all be hunky-dory if I got to 5mg, or 1.5mg and that was it. But it isn't.
Michdonn Anhaga
Posted
Good for you Anhaga, no need to rush. Don't you wish sometimes the doctors could walk in your shoes and feel the pain! I know I do. Big smile just thinking about it, shame me. 🙂