Tired.

[Flosy]

Hi,I am always feeling very tired and I get this feeling sick most days.i just wondering what was going on

Iam on 7mg pred.have been on them since april 1st.go down to 6mg on may 1st.

[HeronNS]

Did this start when you tapered to 7 mg? It's a good idea when you get ot this level to taper by only half a mg at a time, if you have pills which can be cut. If not, to use a slow taper method to ease yourself down. At this dose level you are at the point where your adrenal glands have to start producing cortisol again and it can take a while for them to pick up the pace. Can you stay at this level until you are feeling better? And if you don't start to feel better perhaps you are simply not ready to taper further at the moment. How long have you been taking pred and have you tapered by a full mg monthly throughout? The lower your dose the larger the percentage drop each time, and that's why the taper works better if it's slower. The lower the slower.

[Flosy in reply to HeronNS]

I am been on pred since march since 2020 started at 60mg.yes I have been loweing down july last went down til15 mg.then 10mg in aug stayed at that dose for 2 months then from oct til now it's been 1mg a month.how do I go lower.

[PMRpro Ambassador in reply to Flosy]

"how do I go lower."

SLOWLY! 1mg per months is the ideal - but not everyone manages it and at the stage you are at, as HeronNS has explained, your adrenal glands must start to wake up and contribute to normal functioning. That doesn't happen overnight and at this stage you often need to slow down just to let them wake up. Half a mg at a time is even better and not rushing from one dose to the next is essential.

[HeronNS in reply to Flosy]

What sort of guidance are you getting from your doctor? Usually what happens is patients are encouraged to taper a bit too quickly, especially once their dose gets lower as yours is, and we have to back up a bit and go more slowly to avoid either a flare of symptoms, or pred withdrawal (which feels like PMR but happens sooner and gets better) or, as may be your case, tiredness because of sluggish adrenal glands - which means the taper has to become really really slow, even if the PMR is feeling okay. We have some slow taper plans in our pinned posts list. I use Dead Slow Nearly Stop, and DorsetLady's Simple Taper also has good reviews. There are others. All are aimed at helping us achieve our lowest best dose without too much pain, where we wait it out until PMR has gone into remission, which can take a couple of years or often more.

[Flosy in reply to HeronNS]

Hi.am getting what I am doing,1mg.amonth wants to get me off all together by end of the year.i had a really turn today came over all hot and my heart was racing,sat down for 20mins,then carried n doing my work.cause I was at work.

[PMRpro Ambassador in reply to Flosy]

Your doctor may well want you off pred by the end of the year - it isn't their decision.

You are now at a stage when there are two higher authorities than the doctor: the return of adrenal function and how your PMR is. It doesn't go away to a timetable, it comes when it wants and goes when it wants, and as long as the underlying autoimmune cause of the symptoms we call PMR is active, you will need some pred to keep the inflammation under control. Your funny turn could be due to poor adrenal function but my atrial fibrillation is often worse if I am on the edge of being at too low a dose for the PMR inflammation and they can be like you describe.

[HeronNS in reply to Flosy]

Please let your doctor know as soon as you can what is going on with you. With any luck they'll see the light and give you better support and "permission" (which means prescribing sufficient pred) to taper at a rate which better matches your needs.

[SnazzyD]

This stage is a tricky balance between waking up the adrenal glands by challenging them in gong lower and not going too fast your body has a crisis. 7mg is not quite enough for most people’s day but still a bit too much for your natural cortisol production’s alert system to notice. The only way is to reduce below this awkward level, BUT slowly and as long as your PMR is stable. If felt pretty rubbish from 7-5mg when finally my body realised it had to make some of its own cortisol. From this stage 1mg per month was way too fast so I did 0.5mg drops.

[jinasc]

Flosys

I notice from a post you wrote about 10 months ago that you have GCA, I am presuming you have both PMR and GCA and that you were diagnosed just before that date.

You are just one year with GCA and PMR and down to 7mg, in my book is a very fast reduction.

Methinks you need, as the others have said - a long chat with your medics and before you do

I would be reading up on these two links:

British Society of Rheumaologists guidelines on GCA.

academic.oup.com/rheumatolo...

The following is a link to the easier to read GCA Guidelines provided by PMRpro.

guidelines.co.uk/cardiovasc...

[Jantayl in reply to jinasc]

Hi. I have had both PMR and GCA for 3 years. Interested in Flosys post as I too am feeling tired, and sick all the time. I am at 5.5mg and am now on a 3rd course of antibiotics for UTI started 3 weeks ago. My GP has suggested that I increase the steroids. Do you think this will help?

[PMRpro Ambassador in reply to Jantayl]

Depends how you look at it - the fatigue and nausea are very likely to be due to poor adrenal function. The only way to encourage it to come back is lower pred so if you increase the pred, while you may feel better it won't encourage the adrenals as well.

Did the doctor test for a UTI? You can have the symptoms without the bugs - and 3 lots of abx is a lot.

[Jantayl in reply to PMRpro]

Yes - gave urine sample. I self catheterise and have had several UTI over the past year - but don’t remember being so nauseous or tired before.

[PMRpro Ambassador in reply to Jantayl]

It sometimes really clobbers me if I have a UTI - and of course abx do the same and you've had 3 lots.

[Flosy in reply to Jantayl]

Sorry but what is a UTI

[Jantayl in reply to Flosy]

Urinary Tract Infection - sorry it is just a term I have got used to over the past 2 years. As if PMR and GCA is not enough! I keep learning about illnesses/ conditions I had never heard of before.

[Afwalsh]

Flosys I know exactly how you are feeling. I was diagnosed mid Dec 2020 and started on 15mg. I have been decreasing monthly and am now down to 7mg, this is the 2nd week from 6mg. I am so exhausted I can barely move. I have some PMR aches but I can live with those but the fatigue, the calf knots, the major sweating sessions and the aching head make me want to get off prednisone ASAP but..... Not to mention the weight gain. OMG I have been watching what I eat, I dont have enough energy to do any exercise except walking home from work about 6 blocks and I gained 4lbs last week. Can't I just stay home and rest 24/7?! Nope I am divorced and live alone, my son is about 3000km away and most of my friends are in other parts of Canada, places I use to live. Sorry I am dont mean to sound negative but I am just so tried of feeling so tired and achy and basically like a bag of sh*|.

Hang in there, together we will get thru this.

[Flosy in reply to Afwalsh]

Thank you I know what u mean,I have aches and pains.but feeling tired is the worst isnt it,make me have no energy.

[PMR2011 in reply to Flosy]

Hi Flosys, one year to be at 7 mg seems very fast for GCA which can last 2-5 years or so. Agree with the others, would talk with your Doctor about slowing it down. Have you had inflammatory markers checked recently? My biggest symptom of large vessel GCA was horrible fatigue. So it could also be a flare.

[Flosy in reply to PMR2011]

Yes they what I am suffering at mo.yes I have my marker last week.they were all ok.thanks