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symptons return while on 20 mg pred,insomnia worse

Posted , 8 users are following.

cheryl74384
cheryl74384

yes, well i wish i could continue on my original story and facts, but have to reiterate everything to explain where i am with treatment, oct 12, gp started me on 40mg,had full blown symptons of pmr, no baseline bloodwork done before starting pred, from there every 3 days had me drop 5 mg, until down to 30 at which time i saw rheumy, have to say pain for most part being managed at those levels, she then had me continue taper 3-5 days down to 25, then 20, seem to be managing at 20 til about 9 days in on that dose, then boom, symptons returned, contacted her, to get explanation why would take 9 days on 20 to have symptons reappear, she said, i must have been to active day before symptons came back and see how i did over next week then call, thing is , insomnia is getting out of hand, sleeping shorter spurts, awakening at 2:30-3 in mornings now,cant go back to sleep, i asked bout splitting doses ,didn,t want to go back to 25, nor was she ok with that, but she told me, see my gp for sleep problems before we could start thinking about splitting doses, and or increasing dosage, so for 7 days now have had bad shoulder pain on awakening ,taking 5-6 hrs to subside after meds at 6:30 am, then starts up again in evening around 9 or so, and cycle starts all over, try to go to bed by 11, wake once or twice, then up by 3 at latest, done in by mid morning, thing is, i wanted her expert advice re dosage adjustment etc  and all she is saying is see gp for insomnia first, which is kind of ironic, as ive been told, prednisone can cause insomnia, i have taken lorezapam the odd time for insomnia, doesnt help, as  i go to sleep right away, even without that, but just don,t stay asleep, for longer than 4hrs, any advice out there and is insomnia making symptons feel worse for me,

0 likes, 13 replies

13 Replies

  • EileenH
    EileenH cheryl74384

    Posted

    The only thing I can say is you have to adjust to your new normal, you need to put yourself first and rest/sleep when you can. Most people have the insomnia problem at higher doses, you really do have to accept that is the way it is and manage YOU the best YOU can. Don't go rushing around after other people, however much you may want to and try to have a rest in the afternoon - you don't have to sleep, resting also helps a lot. You may even sleep. 

    The insomnia probably IS making the symptoms feel worse to you because you are panicking about it and that causes tension. Try looking for some relaxation apps/CDs and practise them. But this is why we keep telling you - you MUST accept you are unwell and behave appropriately If you had flu or had had an op you would rest wouldn't you? It is no different.

  • Anhaga
    Anhaga cheryl74384

    Posted

    I was a lifelong insomniac.  I don't seem to be any more since I usually take a calcium dose at bedtime.  But even in the summertime when I had temporarily discontinued that supplement the pattern must have been broken and I continued to sleep well.  Being used to perhaps having a nap, then waking up and being unable to get back to sleep, or maybe never actually dozing off, I got into the habit of getting up, going to a comfortable chair in my living room, and reading, perhaps trying to do a crossword, usually I would nod off after a while.  Because I was used to not getting to sleep it never really bothered me.  I was more concerned about disturbing other people in the house which is why I would often lie in bed wide awake for hours.  Apparently the idea that we should sleep for eight hours straight is a modern invention.  In the olden days many people used to have two sleeps.  They'd go to bed for a while and sleep and wake up somewhere in the middle of the night, get up and do something by candle or lamplight like write, read, etc.  Then they would go back to bed and have another sleep until daybreak.  Of course with electricity we don't need to do that any more.  Can you imagine how bored we would be during the time of year it's dark by 4 pm and doesn't get light until after 8?

    • cheryl74384
      cheryl74384 Anhaga

      Posted

      well Anhaga, i think everyone is different , and requires different amount of sleep, some can function on 4-5, others 8-10, we have learned that good quality sleep is healthy, for heart especially, brain, and several other important organs, sleep deprivation can cause several health issues after many years, takes toll on body, but to each his own as they say
    • Anhaga
      Anhaga cheryl74384

      Posted

      That is very true.  I just wanted to suggest you might be able to get your sleep in a different format.  As Eileen suggested you might get some of your needed shuteye sometime during the day.  You are already getting about half of it at night I think?  
    • cheryl74384
      cheryl74384 Anhaga

      Posted

      yes Anhaga, i do try through the day, because bout noonish or before, i feel absolutely like a worn out old rag, like lead, i do lay down somedays i can nod off for a bit other days not, today i was up at 3, but lay on couch at 2 , and went into pretty deep sleep for almost hour, felt much better after that, i am trying to rest when i feel that wave come over me, and at night, ive decided, when i am so fatigued and fighting sleep by 10, i am going to ive in and go to bed, by thought was, don,t go to early, you,ll get up too early , but that is happening regardless, so going to try sleep when i feel i can,t fight it,
    • EileenH
      EileenH cheryl74384

      Posted

      It actually often works better to plan a time for a rest and stick to it - BEFORE you get so tired. Remember how we used to say our children were "past tired"? - same applies for us I'm afraid.

      Before pred I was in bed soon after 8.30pm, I'm still there at 10pm even now! You don't have to tell me twice to go to bed redface

  • maid_mariane
    maid_mariane cheryl74384

    Posted

    Hi Cheryl

    Seems like I'm emailing you alot. I know how you feel about insomnia which is both rhe disease and the drug. My GP got me on the most heavy duty sleeping pill and i was lucky to get 2-4 hours of sleep. Cat nap when you can it helps.

    This goes back to a previous thread on my medical tobacco in Canada. I would do it with the pill and started getting more sleep, it has really helped. Food for thought.

    I now still take my pill and it works better since i did 2mos of smoke and when my sleep falls off i smoke again.

    Mariane

    • cheryl74384
      cheryl74384 maid_mariane

      Posted

      thanks maid mariane, don,t want to be  a sleep pill junky, but am looking into your alternative suggestion, res

      earch, and personal experiences from many people are advocating medical tobacco etc, 

  • dan38655
    dan38655 cheryl74384

    Posted

    With pmr symptoms raging, I was lucky to get even two hours at a time of sleep withut having to get up and walk around for ten minutes before trying again.

    With my pmr symptoms better controlled, I sleep better, proportional to how well my symptoms are under control.

    I am getting better control by fasting, to the tune of just a 2-4lb weight loss, even as I have further reduced my dosage of prednisone. And my digestion feels more at ease, further helping me get my needed hours of sleep and with seemingly fewer trips to the bathroom.

  • susan29426
    susan29426 cheryl74384

    Posted

    I've had similar experience, particularly with the pain schedule and falling asleep easily enough, then waking up wired. Splitting the prednisone dose has helped a lot with the pain. Regarding sleep, my doctors were very happy to give me ambian and things like that which I do not want to take (the side effects being very scary - already have enough of those from the prednisone). It works well for me to take tylenol with codeine before I fall asleep. It kicks in about an hour later, about when I would be waking up, and I sleep most of the night. Of course, opiates can be problematic, but this seems to be o.k. It's fairly light weight, and, if there's an addictive high involved, I'm asleep when it happens! Also, I never have more than one a night and have been committed to that or less for the last six months or so. My GP monitors and feels o.k. about prescribing. The otc stuff like tylenol p.m. has just the opposite effect - I wake up a couple of hours later wired.Am considering looking into CBD. Best wishes.

     

    • cheryl74384
      cheryl74384 susan29426

      Posted

      what is CBD susan? ive resorted last night and tonight to lorezepam, 1 mg, but i too dont want to make a habit of that, they are addictive, and have had a bad experience years ago when i lost my husband,and was taking them regularly, but i do need some sleep, think lack of sleep makes pain feel worse,and get so worn down, the advice ive been given on this forum, is to just rest when body is telling me i need rest throughout the day, and i do try to do that now, it helps somewhat,with the hope this last flare up, for 9 days, is going to settle, and the 20 mg of pred i,m on will keep inflammation under control, by rheumy, nor myself for that matter want to increase dosage again, trying to get down, and i a have a test on tues, saw urologist, because ive had blood in my urine on 3 urine tests, so not sure what that,s about, but happened bout same time this pmr diagnosis was done,also had people on this forum telling me to take one day at a time, and not to worry about things we don,t know the outcome of yet, and that,s hard to do,well good luck with your issues, 
    • susan29426
      susan29426 cheryl74384

      Posted

      CBD is a form of cannabis that doesn't get you high, but is said by some to relieve pain and inflammation. I also have to watch my addictive inclinations, so I think there might be some hope there. Will post the results at some point. In the meantime, best wishes to you.

    • cheryl74384
      cheryl74384 susan29426

      Posted

      and same to you, yes my son is looking into something like that for me, i have been doing lot of reading and research about benefits from cannabis

       

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