Is Exhaustion a reason to stop a slow reduction of Prednisolone?

I have slowly,with some stop and starting, reduced my Prednisolone dose by 5 mgs.

I have now been on 15 mgs for 3 days. The aches and pains are slight and quite manageable, however I feel so tired I could fall over. I am having to sleep deeply at least twice during the daytime as well as hours of sleep at night with some waking. For the first time last night I felt sick and dizzy with fatigue, as if the room was revolving slowly. My eyes hurt when I move them around. Can anyone tell me what, if anything these symptoms are telling me about my reduction programme?

I have recently had 3 days of antibiotics for a UTI, symptoms already creeping back.

22 Replies

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  • Could well be a reaction to the antibiotics primarily, they can be some pretty powerful things! Or it might be that the two drugs together don't suit you very well, or could be steroid withdrawal symptoms.

    I would be inclined to stick at 15mg, hopefully if it's withdrawal symptoms they will pass in a couple of days. Think you just have to ride the storm for a few days. Did you only have 3 days anti-biotics? Or are you part way through the course? If you only had 3 days wouldn't have thought that was long enough! Whatever, hope you feel better soon, or you may need to speak to GP.

  • Hi SheffieldJane

    From similar experience and what I've learned from experts on this forum, my best guess is that despite your best efforts, your symptoms of extreme fatigue and dizziness are due to a possibly too fast and / or too great a reduction in the preds, probably causing adrenal withdrawal symptoms which can be quite serious in themselves. It seems that even the most gentle, calculated reduction in the preds can cause these types of symptoms (more than the normal pain and stiffness associated with PMR).

    The usual advice in this case is to stay on a dosage plateau for a while or perhaps nudge the pred dosage back upwards slightly (e.g. 10% or so) to control things in the meantime. If it means taking longer to reduce the average periodic dosage, so be it.

    As for the eye pain, I strongly suggest banging hard and fast on your GP's or Rheumatologist's door about this since eye problems can be an indicator of the more serious condition of GCA. There are lots of reference articles and posts here if you have the energy to trawl through them. Either way, try to do your homework and get things checked out as best you can medically asap - the uncertainty and stress around what's going on can make things feel a lot worse.

    Hope this helps

    MB :-)

  • Fatigue is a symptom of PMR. The pred just reduces the inflammation and thus the pain. I think we all have good days and bad days. PMR is life changing and we cannot carry on as we did before, we do need to take it easy and rest when we can. Overdoing things is not a good idea. The dizziness can be a side effect of pred. Learn to pamper yourself!

  • Thank for the replies. Yes the anti biotic course was just 6 tablets. I thought that was not many. Normally pain stops me reducing Pred. But this time it is just the woozy tiredness. I will plateau on 15 mgs and see how I go. I haven't been over doing it just trooping off to bed like a naughty child when everyone else is doing something interesting. Mind you my dream life has become very vivid!

    Is there a thread on here about UTI? I've got a feeling it's something we might be prone to. Still trying to navigate my way around, this site , this condition,this new life. Thanks for being there.

  • UTIs have certainly been discussed many times, but I think they have been in replies rather than in the initial post. So that makes it more difficult to find, although someone who may have replied before may see your question.

    Fortunately not suffered myself! But think it is quite common.

    You might find answer if you type in "UTIs and PMR" in browser!

  • Have you thought that it dizziness and nausea may be a sign that the UTI is more advanced than first thought? I'd get an emergency appointment with G.P. Feel better soon. X

  • Hi again SheffieldJane

    I absolutely agree about the woozy tiredness! It's different to a normal, 'nicely' tired feeling. At its worst, I call it 'deathly tired', and you can sometimes feel really wiped out for no obvious reason. I know what you mean about vivid dreams too - if only you could record them!

    As you say, it's a very different life with PMR - one that takes a lot of adjusting to at many levels - but fingers crossed that there's light at the end of the tunnel.

    Keep smiling on the journey

    MB :-)

  • Interesting that you say dream life has become very vivid.. ..I have wonderful dreams every night ever since I started taking pred. No nightmares, just really strong dreams. Are we alone in this?

  • Perhaps we are having adventures in our sleep. My dreams are lovely, colourful and humorous. Unlike a lot of my waking life. How odd.

  • Last night I dreamt I was a pair of curtains. I mentioned it to my GP, she just told me to pull myself together.. ;-)

  • 😂

  • When I was at this dose, I can remember that all I seemed to want to do was sleep! I still do that after lunch almost every day. I put it down to a combination of PMR and the preds. I would say, though, that it has got better over the weeks/months.

    I would guess that the antibiotics, and stress from the UTI, have contributed.

    Good luck and God bless.

  • Apart from GCA I have kidney disease, and often get UTI's, like you my Dr. only prescribes 6 tablets, I was told by my GP that there was no need for more than 6 . and my UTIs usually clears up with that amount, [ my last one 2 weeks ago was e.coli ] My ESR and CRP always rises with a urine infection, and was told not to increase my Pred. Urine infections can make you feel awful. Have you had your urine tested since finishing the a/biotics? you may need a different one.

  • This is all really useful. I will follow your advice. I hope you are enjoying a glorious sunny day in your part of the world!

    I imagine it's heaven where you are Dorset Lady.

  • Hi

    I have suffered numerous UTI both before and since PMR diagnosis, 18 months ago. The UTI can be very debilitating.

    I now use an alternative to antibiotics, which works for me. "Waterfall D- Mannose" taken at first sign of UTI. I buy on Internet from Sweet Cures, and always carry it with me. I was advised by my GP to use an internal moisture product every day. Together these have kept me free of a serious infection for some time.

  • I certainly understand the fatigue as this is a feature of my journey with PMR. In my case I feel like a wave of tiredness sweeps over me and the only thing I can do is go to bed and sleep deeply. This can happen at any time of day and even if I am not actually doing anything. This means I usually sleep for 14 or more hours out of 24. Feel like a dormouse :) zzzzzzzzzz

  • I feel exactly the same S4ndy you explained it just how I feel, Rheumy nurse said just 45mins sleep in the daytime but I go to bed in the afternoon have to sometimes I sleep for 1hr or 2hrs, still sleep at night, my body just goes to jelly and have to stop, feel much better after, do you think it's PMR or the steroids. Val

  • I think its a combination of both. I have noticed that as my dose comes down I have a bit more energy in the tank but it gets used up quickly. Can only do one thing a day so its a case of pacing. I just go with it now and sleep if I need to. Doesn't seem to stop me sleeping at night though :)

  • I recall MedPro or another sage person saying something to the effect that if they stopped reducing due to fatigue they would still be at the starting post.

    I posted this on another thread a couple of days ago and thought it might be of relevance here as well....Over my 2 plus years dealing with PMR, fatigue has plagued me from time to time to varying degrees (sometimes totally debilitating), and for varying lengths of time (a day or two, or weeks).

    I now know to expect a period of fatigue at some point with any reduction in prednisone.

    A recent change in environmental conditions, from a very dry climate to one of very high humidity pretty much knocked me flat after the noon hour for at least 3 weeks!

    Then, there are what I call my "sluggish, steroid brain" days following a day of doing too much.

    Fortunately, I'm retired and have a very understanding husband, so I can roll with the punches PMR delivers...

    I too have had UTI's several times, but most often at the higher prednisone levels.

  • Thanks for this, it's helpful and reassuring. I think it's beginning to dawn on my husband that this thing is not going to go away anytime soon. I feel like a permanent party pooper.

  • Not really at this level - if you were under 10mg I would suggest waiting a bit. Above 10mg you are taking well above the "physiological dose" so there shouldn't be any problems.

    However - you shouldn't be trying to reduce if you have something else going on - the UTI! Is it confirmed as a UTI by a urine culture? Often the symptoms can be due to PMR or even taking your calcium tablets and not drinking enough at the same time can be enough to dehydrate you enough to allow calcium grit to form - very irritating!!!!!!

    As piglette points out - fatigue is an integral part of PMR and the pred does nothing for that at all. At high doses you may find the fatigue balanced out by the pred effect - at some point it doesn't...

    Even after 7 years of pred (12 years of PMR) I still occasionally have those fatigue bricks! The other day I sat at the table in a restaurant and suddenly thought I was going to fall over sideways! Bed was the only answer.

  • Thank you for this it helps. I struggle with hairdressers and dental appointments too now. I feel like I'm struggling not to faint. Sleep feels like my favourite thing - time out. Just had a dispiriting session with a different GP who wants me to decrease Pred. By 5 mgs over 5 weeks, to 10 mgs. She also applied scary pressure about Aldronic Acid ( that's wrong but I mean the Osteoporosis drug). Damage to bones permanent etc. nothing backed up by knowledge or test results, bone scan fine etc. Urine tested with a dip stick and now sent off, long lecture about diabetes. I found playing dumb worked best and just said I feel so rotten I just don't want to feel worse. The informed intelligent patient is just fought with scare tactics. At the risk of sounding dramatic, I felt like shooting myself when I came out. Unlike how strong and buoyed up I feel after the thoughtful advice on here. Sigh!

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