Can I ask does anyone have the physicl symptoms I have when lowering pred - its like suddenly my body has used up all its reserves it has built up and literally like deflating a balloon. Very black circles under my eyes and sore eyelids - and seriously depressing fatigue. I become a shell. Then I have to give in and put it up a bit. (I know recently I was trying to reduce!) Its like I'm looking out at everything but not "there". Just wondering if anyne else gets like this.
Pred - physical symptoms on lowering: Can I ask... - PMRGCAuk
Pred - physical symptoms on lowering
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powerwalk
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PMRproAmbassador
In how big steps are you trying to reduce? Many people do experience various effects on changing their dose - the smaller the step down and the more "buffering" you can instroduce the better. The Dead Slow approach means your body only experiences the changed dose one day at a time to start with and is back to normal for a few days - and that usually makes the effects less apaprent.
This has happened me a few times - it kind of scares me - I don't even look right. I've put the dose up to try get a handle on it. So I'm hoping a few days on the hight dose and then back down a bit will do the trick. Obviously just back to dose I was ticking over at. It might also be all these UTIs I've had not helping - and breaking my toe - I suppose its all stress to the body.
If you aren't well and have injuries it really isn't a time to even try to be changing the dose. But you haven't told me how big steps you are trying?
Sorry - had been on 4.5 - so tried over a few weeks to gt to 4 - so that didn't work felt rotten - So I put it back to 4.5 - but it was like I just didn't have enough reserves - so have put it up t. 7.5 - thats how rotten I feel. So presume I can get down to what I was on - 4.5 when I feel a bit normal again? How long should I stay at the higher dose. I feel I;ve ruined it - though in fairness I've been on 4.5 forever.
Do you feel better on the 7.5mg? If you just stay there for up to a week you can drop back to 5mg fairly easily. But think hard - was the 4.5mg really enough? There is no virtue in trying to survive on too low a dose. One top PMR rheumy likes to keep patients at 5mg for up to 9 months - and it seems to help. These are low doses that really aren't doing much, if any, damage.
Oh really? Yes in fairness I was barely ticking over on it. Still shocking tired. Yes maybe the 5 for a while. Would like to be half civilised for Christmas!! Not that I'm doing anything exciting!! Thank you.
I would. Quality of life is the most important aspect of living. We can bumble along feeling awful for years - or we can take a tiny bit more and feel pretty good. I know which I choose! Luckily I have doctors who agree - but really even 1/2mg can make a noticeable difference to how we are able to live with PMR.
Yes unfortunately that seems to be the way. My GP will have a heart attack when she is finally told - when I need the next prescription!! She thinks I'm well down the scale at about 2 or so.
Is there another in the practice who is a bit more realistic?
No - not really - I've been kind under a compliment as they say - as she's aware the Rheumy took me off the Pred. So she keeps saying that. (though as I said before the Rheumy took me off it way too early - 12 months). So at least I have about three months prescription left - and hopefully get her on a good day!!!
DorsetLadyPMRGCAuk volunteer
Hi,
Further in from your previous post, I think you need to be sure whether it’s steroid withdrawal - does it come on virtually straight away ? Or do you think it’s the beginning of a flare - it comes on a few days to a week after your taper?
You did say in previous post you were doing a slow taper, so perhaps you have just got the level of Pred you actually need at the moment, and should stick to that for a while.
Not everybody’s SW or flares are exactly the same- unfortunately!
Yes - its very odd - its like you literally deflate me. Even my physical appearahce changes. I did panic a bit this morning because I was very stiff around my shoulders. Brought back very unpleasant memories of when this all started!! Including the deathly fatigue.
Well that sounds more like the beginnings of a flare then to me.
The deathly fatigue is something I can associate with very easily, I was like that on and off for about a year while my adrenals dithered.
The only way is very slowly, and as SnazzyD says have you had them checked?
Winter is very often not a good time to reduce, and as you’re still working it might be wise just not to try for the next couple of months.
No point in not taking enough Pred, when just an extra mg or two might give you better quality of life.
Yes the fatigue for me too was horrendous before diagnosis. I will keep the synachten test in mind again. Gp said only if you are on 7.5 or more for a prolonged time. But i will ask again. Thank you.
Yes but you have been over that dose for some time. What to the GP is a prolonged time?
I got the impression she meant years. She was so dismissive she made me feel stupid even asking.
Having looked back at your previous posts it seems that neither your Rheumy nor GP has much idea of how to treat PMR. Not sure how long ago you were diagnosed, but it’s seems about 18 months or even less - if so then you’ve had a very rough rollercoaster ride so no wonder your poor body doesn’t know whether it’s on its head or it’s heels.
And although that may not be a prolonged period of Pred in respect of PMR terms, it’s long enough, and along with the yo-yoing you endured to affect your adrenals.
Any chance of seeing another GP or another Rheumy - realise that may not be easy, but if you can I would try.
Two and a half years now. I do think i will ask for a referral if i need it becsuse she wont keep giving me the steroids. But i have about three months prescription left. No way il be off them by then. But certainly not to my original rheumy!
Where are you?
Dublin.
I can't remember for sure, it was a while back, but someone in Dublin recommended a rheumatologist and I think it was the guy at the Dublin sport surgery clinic. I know your system is different but not much about it - do you have to pay for whoever you see? There is also someone down in Cork with a good PMR reputation - but that isn't very practical is it!
Sounds about right. There’s no way I could jump from 4.5 to 4 in one step and stay there. I do the dead slow routine but even then my body certainly knows when I’ve got to 2 or 3 new doses in the week. At times I have felt a bit hopeless about it but popped out the other side. If I’m ill, I don’t push it.
Yes - I did do it slow - but it was obviously just too low - then having to build it up again!! What a pain. But I need to feel half human again. This is just hell. Thank you.
Have you had a Synacthen test? When my adrenals were clearly not working very well I felt the worst of all.
No - I did mention it to her but she said only people who have been on 7.5 or over for a long time!! But its not off my mind to bring up again.
Er - weren't you?
What have you been on over the years then? If you have PMR I would jolly well hope you’ve been treated with over 7.5mg for more than 5 minutes at some point.
Yes started at 20. I need to try think how the phase for 7.5 and above was.
That has nothing to do with it in terms of adrenal function. You have been on sufficient pred for long enough to potentially have problems regaining adrenal function. You were at above about 8mg for more than a few months. That's where it all starts. You haven't been at below 5mg enough for it to have returned.
I was thinking about posting the exact same thing right this minute when I read your post! Was going to title it “I really don’t understand this illness at all.” Had 2 days—Monday and Tuesday—where I was able to do a few things. Not as much as a normal person, but little short outings, very enjoyable. Wednesday: whammo! Today: whammo! And I too get frustrated. Sad. Mad. I just want to be able to figure out how to “pace” myself when I seemingly do so little. There doesn’t seem to be a way to predict, at least for me. Obviously I don’t know when or why I’m gonna be pmr-flattened.
I’m doing dsns to 5 1/2 mg pred, into my 2nd year of pmr, started pred September 2016. For me anyway, I don’t think it’s the reduction as much as it is the illness. Feels unmanageable, like I get blitzed for no reason—am wondering how I will make it through the holidays. Best wishes to you!
Oh i know exactly what you mean. Between the condition and trying to humour the pred. Ive been so bad ive barely been able to think. I may keep it up for a bit. Thank you.
You have summed my life up. On good days I manage some small task, which then knocks me back one, two days or more when I can't do anything sometimes can barely walk. It''s so frustrating and depressing. Can't get the hang of pacing, it's all so unpredictable. Trying to reduce from 9.5 to 9.0 DSNS but not much succuss yet but have got below 10mg fo the first time after nearly 3 years, woo!
Yep. Gotcha. Can't walk, can't do much of anything. yep, unpredictable. That's the part that bugs me. I get it when I can look back and say, "oh, I overdid it" or "my body is telling me I need more pred;" I've had those days. It's the days when I can't for the life of me figure anything out, why I feel so rotten and just plan ill. And then I rebound for some unknown reason and plug away again. There is no sensible pacing involved because I've never figured out the reason why I feel this way. Frustrating and depressing, you nailed it right on the head.
Yes - you litrally think you are getting somewhere - then - oh no you aren't!!
I empathise with all this. I think I'm making progress because I manage to walk more than half a mile or clean a few windows, then have a couple of days when I'm overwhelmed with fatigue and flu-like malaise. It's all so unpredictable. I'm so glad this forum exists as, sympathetic though family and friends are, they can't really understand what we experience and the variations from one day to the next.
Yes couldn't agree more. I would be lost without this forum. Especially when it comes to the steroids. I would have been trying to do my Rheumy's way- off pred completely after 12 months - honestly I wasn't even able to move. But I learned enough here to get my GP to prescribe them for me. Honestly what state would I have been in if I did it the Consultant's way.
Absolutely, although I must say I've been comparatively lucky in my rheumy, who doesn't seem particularly bent on getting me to reduce pred very quickly. I went down to 10 mg last week and she told me to stay at 10 until our next meeting on 27th February.
oh wow!! Just wonder why they all differ so much. Either there's a way to treat it or there isn't. Just can't understand sometimes why there is such a difference the way it is dealt with. Luck of the draw!!
Depends where they trained - anyone from Bristol, for example, would go slowly slowly.
I've just googled my rheumy and she trained at Cambridge and Imperial College.
I had a rheumy who used to lecture at London hospitals, he said on PMR. His attitude was that you should expect flares and should reduce as fast as possible to 10mg doesn’t matter if you were in pain. I don’t know what he suggested after 10mg as by then he was an ex rheumy.
That is an excellent description. I don’t think you are on enough Pred and you certainly shouldn’t be reducing and when you do it should be tiny amounts and very slowly. Rest, rest, rest. Moisturise those eyelids and take great care. If you have good doctors, see them.
Again, I replied before seeing all your wise helpful advice. I am Adrenal deficient and I recognise your description. I stick to what I said initially too. Even when your Adrenals are not working well, you just wait ages for an Endocrinologist appointment and must not rush off Prednisalone.
Oh no I won't. I can already feel the affects of putting it up to 7.5 for a couple of days - starting to feel somewhat human. Gosh its a bit weird the way it goes. Worst thing is getting the bloomin GP to understand!! Thank you its good to know I am not going mad. Everyone is just so good!
So you went back to 7.5 for a couple days and you feel better? (I'm glad for you!) What now? Will you go back to where you were and try again, or stay at 7.5 and start all over from there?
No - I'll do a few days to get me going - then go back maybe 6.5/6 down - to maybe 5 for a bit. See if I can still feel ok - because I just can't keep coming in to work in the state I was - not human at all. I'm finished work in Feb so maybe things might work a little bit better re the fatigue end of things. Won't have to be stressing over trying to look like a normal person in work - its depressing to say the least!! Definitely a difference even a couple of days on the 7.5.
I feel horrible the first week of every decrease. I am going from 2 to 1&1/2mg Pred. Feel it in hands and wrists, drop everything. At this low dose I developed spinal stenosis not sure if it’s related to drop in Pred. Maybe inflammation is not under control as it was with higher doses. 5 weeks of PT hasn’t helped much. Did decrease Zumba and just do very low impact if I do it. After a week of feeling bad I magically become OK.
Increasing your dose seems like a good idea. Remember, this illness has a mind of it’s own and rushing to decrease makes it worse. Feel better!
Hi Powerwalk, you have received some excellent technical guidance from our forum pros! These women have walked the PMR/GCA miles, and managed prednisone for years...some of them for a decade or more.
My contribution here is simply to say,...this PMR journey is not a race to get off Pred.
I was diagnosed with PMR in 2013, and even now, my pred dose remains at 6 mg. Since my diagnosis in Sept. 2013, I have tried to taper my pred daily dose down to 1.5-2 mg three different times before triggering a flare each time.
Early on, I hoped I'd be off pred in a year or so, and am now well into year five, and still using 6 mg. The tapering steps between 8 and 6 mg pred were most difficult, with depression, severe fatigue and flares plaguing me all the way.
I have only been able to taper 1/2 mg. Pred at a time, ...spread over months. Clearly my PMR is still "chugging along behind the scenes" (to quote PMRPro), and I am reconciled with the fact that prednisone is my longtime life-mate.
Its 3:50 am, and I've been awake since 1 am..(another gift from PMR/ Pred).
Good night till the next..., Jerri
Oh no - nothing worse than being kept awake with the Pred. I remember it well. Yes - its the fatigue thats a killer when trying to lower. But the way I actually look "wrong" is just weird. My eyes look like they've done a couple of rounds with Mike Tyson. (Slight exaggration). I literally can't hold a conversatin with the tiredness. I've put it up a bit to try get a handle on it. I can already feel the difference. That in itself is scary.!! I'm turning into a half human! Who'd have thought when my Rheumy took me off it at 12 months that I;d still be on it after two and a half years. She'd have a fit!! As PMRPro said - she hadn't a clue! Thank you for your reply.
I am at 1 mg now and I have issues as well. Ankle not strong and muscle in my left leg is weak. I go up and down a stair slowly and it’s embarrassing. I am not at all fatigued. This illness is bizarre and frustrating because it really never leaves the body. In other PMR groups I belong, they went through the prednisone route only to end up back where they started and they take other steps to manage flares: Rest, exercise, Advil or Tylenol , anti inflammatory and gluten free diets and they say they manage better. Who really knows what really works. Ugh.
Disappointing is not the word at times. Not sure anything other than the Pred would do for a true full blown flare though. Thinking back to how I was in the beginning! But if it works for some - great. Thank you so much.
I just don’t know anymore. My head explodes with what I research or learn from others in support groups. My cousin has PMR. She said to me to listen to my body and my mind and what my gut says. She no longer takes prednisone and manages through exercise and diet and supplements.
My mind says that prednisone simply masks the pain and reduces inflammation but for many of us who have taperd slowly and carefully it returns confirmed by elevated ESR and CRP levels. Their is just not enough new evidence or research being done regarding PMR. Don’t know why. Again I am down to 1 mg and following a gluten free diet. If I consume a drop of sugar, my body feels it. And tapering in general is no picnic. 😖
Oh really? The sugar - that sensitive! Grikey your cousin managing without the Pred - thats great if it works. Yes - the Pred doesn't cure anything - just keeps the inflammation at bay - which is very important. Not a cure sadly. But don to 1mg - thats really good. When I was on 1mg - I literally could not walk. Or use my arms again.
Going through prednisone withdrawal is not easy and the symptoms you mention are those I had too. I was so determined to get of steroids that I decided to just go with the flow and wait for my body to catch up and kick in when ready. I found that after a medication change it would take about 3 weeks before I felt better. I think it takes time for our bodies to adapt. Check some information online about Prednisone withdrawal symptoms that might help explain what is going on in the body. Good luck.
powerwalk• in reply to
Yes - thank you. Might be better able to habdle these severe symptoms when I finish work early next year. Just can't handle it at the moment. Many thanks.
Hi, The circles yes, not the sore eyes, Pred can encourage Glaucoma, have you seen your optician? might be worth it, I have developed Glaucoma and cataracts since being on Pred.
Every time I reduce I get exhaustion, aches and pains, Mornings are bad, I take my pred about 7:00a.m. by 11:00a.m. I am improving and by 3p.m. in the afternoon I am perfectly normal, in fact energetic. So I can bear it as it is not 24/7. After three attempts I am stopping at 5mg for 6 months to try and give my body a chance.
Hi Powerwalk
I get those black circles under my eyes, they go right around the socket on to the lid, even concealer is fighting a losing battle!
In the scheme of things 4.5 or 5mg there isn’t much difference but might may all the difference to You! As you’ve gone to 7.5mg stay there until you feel better then try 5mg again & remember it is Christmas, l’m sticking to my 7.5mg until NYDay! 🥂🎉🥂
I do hope you feel better & take it easy to try & help as well.
Best Wishes
MrsN x
powerwalk• in reply to
Yes will do. I'm sure all the UTIs didn't help matters. Thank you. Best wishes.
I have experienced fatiguess everyone I cut Down on my pred. Unfortunately I always have to go back up to where I came from on the pred, because this inflammation kicks my butt over and over again
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