Morning all! I'm at last down to 5mgs but, like many others, the tiredness has kicked in again. Another of my silly questions coming up - how long is the tiredness likely to last?
Eileen, I know you have been on 5mgs for ages. Do you still get tired? (Excessively I mean).
I have a doctor's appointment coming up and will ask about adrenal glands being checked.
Does anyone know if RA causes tiredness? Can't imagine it does, but........?
Thanks in advance for comments.
C.
RA certainly causes fatigue, any auto immune condition does - at the moment I can't think of one that doesn't.
5mg is an awkward dose, you are waking up your adrenal system and it's got very used to being asleep and doesn't want to waken. You really will need to pace yourself throughout the day and rest when you need to. (I have no choice in the matter; if I try to defy it, I just fall asleep wherever I am which has led to some interesting days).
I do hope you get over it as soon as possible, it is so frustrating!
How long is a piece of string?
It may just be the change of dose - give it a bit to see if it improves. MrsO's lovely rheumy keeps patients at 5mg for up to 9 months to let their body catch up.
No I don't really get excessively tired - at least, I didn't during the China trip and I had every reason to do so! Long days and lots of walking and even more steps!
Yes - RA is an autoimmune disorder and it is also associated with fatigue, it is a component of the autoimmune part of the disease. Nefret has said it all!
If you'd like some reading - have a read of Rheumablog, written by a lady in the USA who was first diagnosed with rheuma in Germany (hence the name of her blog). Wren can wax lyrical about the fatigue. She's had it for years.
Constance, as Nefret has said, around the 5mg dose can be a 'awkward' dose, and one at which many of us have stumbled for a while, probably due to our adrenal glands trying to kick back in with their pre-steroid supply of natural cortisol. Until that happens, we can have a shortfall in our bodies once reducing from around the 7.5mg dose until our own production catches up. If the fatigue is that excessive, then it might be worth increasing back up a couple of mgs for a short while - that will give you an answer and, if it works, it will prove that you need a little longer at a higher dose to ease the fatigue and prevent further unwanted symptoms creeping back in. I had a severe flare which started at 5mg and by the time I reached 3mg couldn't walk. I had to increase to 10mg to control it and then once back at 5mg (via 7.5) my rheumy kept me there for some 5-6 months. It worked and I then followed a painfully slow reduction process, reducing by just half a mg at a time, and taking 7 weeks to taper to each new dose all the way to zero.
Hi Constance,
I cannot offer advice, just sympathy.
I am sort of where you are. Am alternating between 5.5 and 5 mg every other day. I am experiencing fatigue. I do all the things I usually do, but just with a feeling of fatigue.
I have been asked to report for Jury duty and hope I can get out of it. Cannot imagine they want a half asleep person sitting there. Sitting is the operative word. I need to get up to stay awake!
Hope you feel better!!
Paula (ehemalige Muenchnerin)
In the past, being on pred has been taken as automatic excusal from jury duty - it is associated with an inability to concentrate and impaired decision making. There will be a number to call or someone to write to - ring them asap.
String did occur to me, of course!😄😄
Paula, I was excused Jury service long before PMR/GCA due to having spondylolisthesis and being unable to sit for long periods without getting up and walking about - think they thought that might disrupt the trial! Let tthem know how difficult this would be for you - the person I contacted was very understanding.
Do you remember - 50s girl also was excused jury service because she was on pred?
congrats on being at 5mg and my sympathies at the exhaustion. I hope your doc has some info for you.
I do, Eileen.......now that you have reminded me!!!
RIGHT NOW I AM ON 6MGS. I WOULD LIKE TO TRY YOUR STYLE OF ALTERNATING BETWEEN 5.5 AND 5 EVERY OTHER DAY - HOWEVER MY PRED TABLETS ARE SO TINY I CANNOT IMAGINE HOW I COULD SPLIT THE 1 MG TABLET (THE PHARMACY GIVES ME A SUPPLY OF 5MGS AND 1 MG)
The pharmacy will sell a pill cutter which most people are able to use to cut their tablets, even tiny ones. Alternatively, cut the 5mg tablet to give 2.5mg and add 3x1mg to give 5.5mg.
Another way of reducing very slowly is using the "Dead slow and nearly stop" plan described in the replies section of this thread:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Hi Margo
I use a pill cutter to cut the 1 mgs in half. Mine have a line goint through them.
Hi Eileen and Mrs O.
I have to provide a document from my doctor to get out of Jury Duty.
'Thank you for your email. I am sorry to hear of your illness. Do you have a doctor that would be able to write a note saying that you are not able to serve as a juror due to your illness. I would need a note or other documentation to be able to excuse you.'
Called the rheumy today.
I found I had to stay on 5mg for about 3 months before I felt less fatigued and able to start another reduction.
Paula, I didn't need to produce doctor's evidence. On receipt of the request to attend Jury Service, I rang the relevant department, explaining my problem, and I was excused there and then. It was some years ago, so perhaps the rules have changed, or perhaps they differ from area to area.
I hope your rheumy is accommodating!
No doubt there will be a charge for the letter...
I'd have thought photocopies of any diagnosis letter to the GP plus a current prescription for pred would be adequate.
Personally I think you need to be at ANY dose under 10mg for at least 2 months before proceeding and 3 is better. I know the doctors say 1mg per month - they don't have pMR!
Definitely agree as long as 3 months if necessary at each dose below 5mg.