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Fuzzy feeling with aching legs

Posted , 10 users are following.

jackie87166
jackie87166

Hi

My husband has been diagnosed with PMR and is taking prednisolone, 12 mgs. a day.  He takes 7mgs in the morning and 5 mgs. at night. In the morning he feels tired, fuzzy in the head, with aching and weak legs and a higher heart rate until about 3pm. He usually just falls asleep in the morning until the symptoms get better. Does anyone else feel like this? Thanks Jackie

1 like, 28 replies

28 Replies

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  • Oregonjohn-UK
    Oregonjohn-UK jackie87166

    Posted

    Jackie - firstly sorry to hear about your husband reactions to preds.  Was there any reason why he was asked to take them in 2 doses?  Was 12 mg the starting dose or has he reduced down to 12?

     

    • jackie87166
      jackie87166 Oregonjohn-UK

      Posted

      Hi Oregonjohn. Thanks for your reply. My husband was diagnosed with PMR in April of this year. Previously he had Atrial Fibrillation and had just had an ablation which has cured the AF and he could stop taking all his tablets, straight after this he got PMR and started with 20mgs of steroids. He split them into two doses because he has never been pain free and thought that the morning dose had worn off causing the pain to start up again. However, he is now wondering whether to go back to one dose. He is feeling very despondent as he was looking forward to a tablet free existence until this happened.
    • Oregonjohn-UK
      Oregonjohn-UK jackie87166

      Posted

      OK - We are are different and of course depending on other medical conditions we have different effects.   Some folks do split their dose but the majorty don't.  It is important to remember that their are two types -
  • Oregonjohn-UK
    Oregonjohn-UK jackie87166

    Posted

    enteric coated tablet and white.  Does he take any other tablets such as calcium or omeprozone?

    The enteric are usually red in colour and can't be cut and don't dissolve in the stomach so are better if there are stomach problems.

     

    Tiredness I'm afraid is one of the side effect a lots of us have to deal with but it does get better as we reduce the preds.

     

    Don't try to reduce too quickly - if you look thru' the post you will see many have been advised to cut down or stop far too quickly - it will only mean the return of the symptom that he started with.  There is lots of advice on this page https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

     

    Do come back as other will be able to offer you advice as well, and sorry I hit the wrong key halfway through!

     

    Best of luck John

    • jackie87166
      jackie87166 Oregonjohn-UK

      Posted

      Thanks John. He takes the non-coated preds. and also calcium and lanzoprazole. I think you are right about reducing too quickly, he followed his doctor's advice, but lots of people have posted about the disadvantages of this. He is going to go back to one dose and see how things go. Thanks again. Jackie
    • Oregonjohn-UK
      Oregonjohn-UK jackie87166

      Posted

      The gereral rule is to only reduce by a max of 10%, this is a lot easier from 20 to 10 mg but after this you will be close to what is the maintainance dose of Cortisol that our Adrenal glands naturally produce - thats were a lot of the difficuilties start.  It's findind the minimum at a particular time and staying there.  The underlining cause of PMR is NOT cured by preds and will (hopefully!) go into remission at some point usually around 18 months to two years - but don't bank on this - we are all different some are stuck for life or many years.
    • ptolemy
      ptolemy jackie87166

      Posted

      I  am so sorry your husband is having a rotten time, PMR is a b*gger. I took the coated tablets which means you should not have stomach problems. The only trouble is they are only available as 5mg and 2.5mg. Although I know some people mix the non coated 1mg with them. I assume your husband is taking vit D with the calcium. Also has his doctor arranged a Dexascan for him as steroids can cause bone density deterioration?

      I get terrible fatigue, I now just give in to it. 

  • tavidu
    tavidu jackie87166

    Posted

    Hi Jackie. I agree with everything John has advised. Firstly I am glad your husband had success with the AF, my wife has her ablation next month so we are all fingers crossed that it works for her.

    To drop from 20mg a day to 12mg a day in just over 3 months is quite quick so if pain continues it may be worth upping to 15mg a day to see if the pain subsides, if it does then stick with that dose for a couple of months before starting a slow reduction. I had to up my dose from 15mg to 20mg and then to 25mg before I was pain free and am still on 15mg a day after 14 months so unfortuantely it is something that cannot be rushed. I now take mine split 10mg morning and 5mg evening but as John says this does not suit everyone. Good luck, we will all get free of this one day. Dave (tavidu)

    • jackie87166
      jackie87166 tavidu

      Posted

      Hi David.  I hope your wife's ablation goes well. It was certainly a huge success for my husband and he has no regrets whatsoever. Touch wood his AF keeps away now but he has had no problems so far.
  • audrey80537
    audrey80537 jackie87166

    Posted

    Hi Jackie,

    i was diagnosed in March but am currently on 19 mg. coming down from 25 after a flare.  I split the dose at 25 mg because of muscle weakness which was greatly improved after that.  I do get the fuzzy head feeling around mid morning and it lasts most of the day.  It's like a lightheadedness.  It's a bit uncomfortable but not a major problem. I also have a slight discomfort in my ear for over a month and thought that may be the cause.  Have been seeing ENT but so far they have not detected a problem. Will have more tests mid September if it does not clear up.  As far as pains in legs I do not have any pain at all but I am still on a much higher dose and this time plan to reduce very slowly.  To sum it all up I feel like my head is screwed on backwards most of the time.

    Audrey.  Florida

  • Mrs.Mac-Canada
    Mrs.Mac-Canada jackie87166

    Posted

    Hi Jackie,

    Sorry to hear your husband is having such a difficult time.  I'm sure it must be especially difficult dealing with all the symptoms of PMR when he has just been successful in managing AF.

    I do not have medical training but I believe the prednisone usually relieves 70% or more of the pain caused by inflammation within the first couple of days of the first dose.  Some are pain free but I don't believe that is the norm.  Most people deal with morning stiffness and I think some of that is age related👵.  I am 65. 

    Like John said, decreasing very slowly is the key. The idea is to find the dose that will manage his symptoms.  At lower doses the side affects are dramatically reduced so there is no panic to get off the pred.  Quality of life is very important, at least to me.  I have played with my dose and have found taking it at around 4:00 am works best for me.  I do go to bed around 10:00pm.  I am 2 1/2 yrs in and currently alternating 9mg and 8mg. I've had 3 flares from reducing too quickly. Slow learner😬.  

    I think 18 mths to 2 yrs is a bit optimistic and believe new studies have shown 25% remission during that time, 50% remission between 2 and 5 yrs and the other 25% over a longer period of time and some may need to stay on a low dose of pred. Indefinitely.  PMR does behave differently in men I think so I hope your husband is one of the lucky ones.

    PMR does change the way we do things but, with patience, we can certainly enjoy our lives.  As frustrating as it may be it is not life threatening and will go away at some point.

    Wishing your husband and you best wishes in finding the way to manage his pain.

    Hugs, Diana🌸

  • FlipDover_Aust
    FlipDover_Aust jackie87166

    Posted

    Sounds to me like his pred dose isn't high enough. I'm nearly 12 months in and I'm only just getting down to 12.5mg - and it's been a struggle. I've sat around the 15mg dose for months - every time I try reducing it the symptoms flare up and it's the fatigue that's the worst.

    I've just started splitting my dose as I was feeling really awful in the mornings and it was taking hours for the pred to kick in - so now I take 5mg around 4-5am (when ever I wake up to go to the loo) and the rest when I get up about 7:30am. It's working really well as I'm feeling good when I get up and it lasts all day.

    When I was taking it in one dose in the morning it would take a few hours to kick in - make me manic for a few hours and then I'd start to feel normal mid afternoon. Too much day wasted!

    • jackie87166
      jackie87166 FlipDover_Aust

      Posted

      Thanks everyone for your replies. It seems that the main thing is not to reduce too quickly. He is going to try 14mgs a day and adjust how and when he takes it to see what suits him best.  He feels happier knowing that his symptoms are similar to other peoples and that he hasn't got an extra problem. Does alcohol affect PMR at all? My husband has just started drinking alcohol again, not much, now that his heart problem has been sorted and wondered if that could aggravate the condition. Once again, thank you to everyone for your helpful replies.
    • ptolemy
      ptolemy jackie87166

      Posted

      Alcohol definitely affects PMR, it cheers me up no end! I do try and limit the amount I have, but there is no contra indication with pred. Some people with PMR do give up drinking, I am obviously weak willed. 
    • jackie87166
      jackie87166 ptolemy

      Posted

      Hehe. Thanks Ptolemy. It cheers my husband up too so that's a plus when you are living with PMR.
    • FlipDover_Aust
      FlipDover_Aust jackie87166

      Posted

      I drink wine, and I find it helps when I'm tired and sore at the end of the day.... it takes the edge off and gives me enough energy to get through the dinner routine (I do the cooking as Mr Flip is useless!)

      I do like a drop and tend to over indulge at times, but the only thing it gives me is a sight hangover :-)

    • jackie87166
      jackie87166 FlipDover_Aust

      Posted

      Thank you Mrs. Flip. He does usually drink red wine so it's good to know that it probably isn't making things any worse.
    • ptolemy
      ptolemy Oregonjohn-UK

      Posted

      Good point I forgot about the anti inflammatory bit. Even more reason to drink wine. 
    • Oregonjohn-UK
      Oregonjohn-UK FlipDover_Aust

      Posted

      What is Ausie moderate?   I have been reliable informed that one small glass of red wine with your evening meal is not a problem - 2/3 is pushing it!  Forsters is out of the question!!
    • FlipDover_Aust
      FlipDover_Aust Oregonjohn-UK

      Posted

      one small glass? who does that? There's no point opening the bottle for one small glass! :-)

      I'm not a normal Aussie - I don't drink beer - horrid stuff. Give me a decent bottle of red any (every) day!

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