prednisone for pmr, and side affects

Posted , 8 users are following.

well i have now been on pred since oct 12, so, almost a month started at 40, down to 20 for last 9 days, only getting 4-5 hrs sleep a night if that, have to rest thru day, today really feeling strange though, up before 4, so 3 1/2 hrs sleep, have tried to lay down rest 3 or 4 times so far today, and just feeling so dragged out and weak, head is kind of spacey, anyone out there have this as side affect of pred, blood pressure had dropped last visit to dr week ago, couple times now, was always controlled by 160 mg diovan, usually read 130-140 over 80 last week reading 120 over 80, which dr said was good, wondering if it has continued to lower giving me this strange woozy, spacey sensation, in body and head ? or is it simply the prednisone itself, or lack of sleep, just feeling like a zombie, no energy today whatsoever \/

0 likes, 14 replies

14 Replies

  • Posted

    Probably all of the above cheryl! It really is a whole new ball game - but it DOES improve. For the moment you need to treat yourself kindly and try to rest even though you can't sleep. Many of us have to rest during the day and pacing is very very important. There is a link right at the bottom of the post here

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    and the second one in the post it links to is particularly helpful - it isn't written for PMR but all autoimmune disorders have fatigue as a problem.

    Your blood pressure has probably dropped because the inflammation of PMR narrows the arteries and increases the resistance to blood flow - and that raises blood pressure. Getting rid of the inflammation reverses that.

  • Posted

    Hey Cheryl, I had the same reaction. Whenever I respond with what I'm doing the moderator stops my note!!!! We're suppose to help each other! Every time I disclose what I'm doing they don't let it go through!!!

    It's too bad!!!

    Best of luck!

    Tinaj

    • Posted

      You can send a private mesage to Cheryl.  Click the envelope uner her name.
    • Posted

      Hey Anhaga, Thanks!! I sent a private message. Hope all is well with you.

      Tinaj

    • Posted

      It depends what is in it - links except internal links will be captured for moderation first. The computer does it automaticallyso sometimes simple errors result in a capture - and the moderator doesn't really work weekends so you have to wait for Monday morning. And there are things that aren't allowed in public (although they may be discussed on the Alternative therapy forum) - whether you agree or not is another matter but it's their site and they can make the rules. 

  • Posted

    Yes Cheryl, definitely the reduction in pred doing this to you plus lack of sleep! I was reduced from 60 to 30 in one fell swoop and I can honestly say its hard to remember a time when I've felt worse!! Weak, sweaty, palpitations, dizzy etc. It does balance out after a while but very unpleasant while it lasts. You definitely need to try to nap during the day if you're not sleeping or at least lie down and rest. Hope it all improves quickly for you.

    • Posted

      well thank you, it,s scary to feel this way, you don,t really know what,s going on with your body, 
  • Posted

    Sorry Cheryl that you have to go through this! When I was diagnosed with PMR in April of 2015 I had a terrible time with not only sleeping but very irritable and short tempered. I called it my prednisone brain! But it gets better with lower doses. Just be sure and go slow when tapering. I am now down to alternating 1 1/2 and 1 mg a day! 😊

  • Posted

    Hi Cheryl, 

    I had the same reaction re sleep, 4 hours and was totally exhausted, its lasted 8 weeks and the last 2 whilst I've  been at 19mg of prednisolone I have had 6-7 hours so starting to feel more human again.

    my blood pressure also rose when I was at 25 & 30 mg giving me bad headaches and a posterior vitreous detachment of my eye ???? Related I'm not sure, again my blood pressure is normal under the 20mg mark. 

    Hope you feel better soon.

    Try an Epsom salt bath about an hour and a half before bed. It might help with relaxing, and can help with inflammatory problems.

     

  • Posted

    I definitely felt spaced out when first taking Prednisolone (I was on 20mg for 2 weeks then down to 15mg for 3 weeks) also suffered from extreme fatigue. However once I got down to 12mg the spaced out feeling disappeared so just go with it and be patient, it will get better. I am now on 7mg soon to reduce to 6mg, still get extremely tired, havet o pace myself during the day and rest when everything gets too much. It's a nuisance, especially when one is used to being very active, it's just a question of learning to accept it. At least apart from a bit of stiffness in my fingers I'm now pain free. Good luck.

    • Posted

      Careful with the fatigue at this level - it could be your adrenal glands aren't up to speed yet so go slow to give them a chance to catch up.

      Good luck

    • Posted

      i know about the adrenal gland affected, read a lot, but rheumy wasn,t interested in hearing about it, nor did she seem open to doing test for that, said she sleep problems shes doesn,t deal with , she is very quick , wants to get on to next patient, so i leave with a feeling of uncertainty about being confident in her, and has my best interests, it,s a business, i realize that, only seen her twice, don,t know if i will ask for a referral to another rheumy, maybe
    • Posted

      Cheryl - my reply was for Fran, as she is reducing she is now at a low dose of pred where adrenal function has to kick back in and if it is slow she will feel very fatigued. These forums have people at all different stages of pred treatment for PMR so there will always be comments that apply to the person I am replying to that won't apply for others.

      You do not have to worry about that at the stage of treatment you are at. The doctor wasn't interested in hearing about it because it is irrelevant until you get to well below 10mg and there are no tests to be done at this stage that will provide any meaningful information. It isn't that she is "in a business", it isn't that she doesn't have your best interests at heart, she just knows that there is no problem there to worry about at the moment. There is no point doing tests that won't provide information that is meaningful for how she manages you.  

      Anyway, even when you get to that stage, if you are reducing slowly and steadily and having no problems there is nothing to worry about - and that applies to most people. It is only if you get to somewhere in the region of 5mg and you are getting more and more tired that it is worth asking about testing. But there are only two or three people out of hundreds on the forums who have any adrenal insufficiency problems. For most of us it is just a question of patience - WHEN WE GET TO THESE LOW DOSES. Not before.

    • Posted

      Cheryl, I hope you have read Eileen's reply and taken it to heart.  You should feel reassured.  Now I will tell you how I've been, and perhaps you will find as you reduce to a low dose that this will help you:  ever since I got to 7 mg I have felt tired.  Every reduction seemed to come with its own load of fatigue.  But by the same token, this fatigue relieves to some extent as my body adjusts to a lower dose.  Seven was hardest because it was the beginning and I didn't know what to expect.  A few weeks ago I was beginning to worry that I wouldn't ever be able to do anything again, and almost to the stage I wanted to ask my doctor to run the relevant test.  Fortunately, perhaps, I only see her every three months.  Because although I'm now reducing to 2.5 I feel a whole lot better.  I've learned over the past year to do a lot less.  I'm ashamed of the condition of my house and consider getting things presentable enough to welcome company akin to Hercules cleaning out the Augean stables.  But most of the time I cope quite well.  I walk my 10,000+ steps every day, and do my other exercises, and manage to do the bare minimum of housework and cooking to live a reasonably healthy life.  And I'm now feeling quite confident that at 2.5 and energy increasing the adrenals are finally getting up to snuff!  PATIENCE!

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