On the DSNS reduction, or other slow reduction regimes, should tapering be delayed due to daily fatigue?
From what Eileen posted yesterday fatigue is a part of the PMR therefore reductions sould be stopped a while until you feel not so tired even though the pain is a lot better. Well that's what I thought she was saying especially if your pred dose is below 7.5 as the side effects are minimal to none at the rate and lower. I was going to try from 4mg - 3.5 and I still get tired in the afternoons especially if I'm a bit active in the morning so I have decided to stay on 4mg for a few montha more or until the tiredness abates
Fatigue has been in my life for over 3 1/2 years, for me one of the most disturbing things of PMR. If I delayed tapering because of it I'd still be on very high dosages.😡😡
Hello Jean, whilst I was on the high doses - above 9mgs I never experienced any fatigue. But when I began my reduction from 9-8.5, then 8.5-8 I began experiencing fatigue. I only experience it at the very beginning of the reduction, but towards the end of the reduction method I assume my body has become accustomed to the new dose and so doesn't react against it. As Constance has said it at this stage, I didn't experience fatigue at the higher doses, if I stopped my reduction plan because I was fatigued I'd still be at 9mgs. However, I definately definately take things a lot easier in those early reduction weeks because I to have heard that fatigue is a symptom of PMR. I don't fight against my fatigue, if I feel fatigued I believe that's my body telling me to slow down because it can't cope with the new demands of the new reduction and all the activities I'm doing. Regards, christina
You need to distinguish between the reasons for the fatigue. Fatigue is part of PMR and you should be able to recognise whether this is the same fatigue from before.
However - below about 7 or 8mg your body has to start producing its own corticosteroid again. If that is taking time to settle down then you may feel MORE tired than before - something that surprises a lot of people. In that case it can help to slow down the rate of reduction, smaller steps anyway but also staying on the new dose a bit longer before starting the next step. And some top doctors like to keep their patients at 5mg for several months before they continue to reduce.
If you wait to reduce until you have no fatigue you never will! But as long as it stays about the same there isn't much to worry about - if you notice it is worse then mark time for a bit.
Thanks Eileen, and others. I'm still at what many would call a mediun-high dose. Currently holding at 14.5, having tapered from 40 mg over the last 11 months. I've had fatigue off and on throughout my journey, but never as consistently as I am right now. If I don't get in to bed and nap for at least 30 minutes every day I'm toast by 4 in the afternoon. I've been in bed before 9 pm every night in the past week. Mind you, I'm up at 5 am. Have always been an early riser and love the quiet morning hours. FYI, about a month ago I started taking the prednisone around 1:30 am. Waking around that time is not an issue since I'm up to the loo around that time. Although I set an alarm I've never had it go off as my internal clock gets me up consistently between 12:30 and 1:30. am!!
I agree --- fatigue is ongoing with PMR.
Same story with me - 14.5 and holding - going to bed by 8:30 p.m. and having to take at least 3 short naps during the day. I am up at 5 a.m. as well because I like the quiet morning hours. It works, but sometimes not very convenient. What can we do....... but adjust to PMR life.
I bet both of you are doing more now as underneath the fatigue you feel better! Spoons ladies, Spoons!!!!!!
Erika - thats about the time I nod off sat 'watching' the TV! Usually wakup about 2/3 hours later with a crick in the neck and wishing I had gone to bed!! I'm down to 6 mg and my body is saying 'take it easy' - so I'm following that. Keep well.
John, thanks! You are doing great getting down to 6 mg! I am far off with this pursuit. Eventually it will happen, not soon......with 1 mg a month!
I'll be even slower at. 5 mg drops. My body seems very sensitive to reducing. I had to go slower after 17 mg!!! Most definitely a tortoise ☺
Hi Christina, have you ever had light headedness I stand up and have to hold on to something for a minute or two then walk on. This has o occurred to day only. I am drinking fluids ,eating, nothing unusual. I just sit down freq. Taking potassium replacements ,calcium and vit D. Just asking. Thank-you.
Hi pat, no I haven't suffered from this light headedness, at least not pre diagnosis or post diagnosis. However, I am on high blood pressure tablets and when prescribed them my GP did warn me to look out for light headedness as a side effect to the medication. Luckily I suffered from no such side effect even when the dose was upped a tad higher. When I was young, well infact throughout my child bearing years I suffered terribly with anaemia and was constantly on iron suppliments. Once I was on 1000mgs for 6 months that's how anaemic I was. Throughout this period I was often light headed, infact it was the light headedness that warned me of my anaemia. Have you had your iron levels checked, that could be a possibility. Or you could have an inner ear infection. Hopefully it will pass, our bodies do such silly things! But if it doesn't I'd definately pop along to see the GP.
do let me know how you get on, and I hope this simply passes. Regards, christina
You are absolutely right I am anemic but never before have I been light headed Dumb as far as I am concerned for old nurse not to think of this .Thought it might go with the shaking from pred. Getting ready for next total knee so I am back on iron. By. Old nurse I meant myself no one else . Don not know anyone's prior vocations. Thank-you for your concern. I take BP med also. Pat
Hi pat, yes start taking iron and hopefully within a month you should feel a whole lot better. Good luck with the knee op. Regards, christina