Rhumi, Doc or my body (2)

Posted , 5 users are following.

Having carefully read all the contributions in part one I wanted to express real thanks and appreciation to everybody, especially those who share a greater knowledge and experience.

For my part I decided to opt for covering the pain, giving it chance to settle and then head for the long haul . . . . . but out if this comes another serious question and that's about the 'hissy shakes' (I think that was what it was called).

They come and go and I can't find a pattern, cause or cure!

i don't wake up with it but within an hour or so they start, it's almost like the Prednisolone sets the off. But that's not the complete story because they can return anytime during the day.

What are they please?

0 likes, 17 replies

17 Replies

  • Posted

    Hi David,  I haven't had that with pred but it does sound like a drug reaction.  What drugs are you on?
    • Posted

      Thanks for showing an interest . ..

      i start art the day with oxytetracycline for eyes, then I have my Prednisolone, next it's omeprazole to protect my insides and also to control acid reflux. I gave Losartan and Hydrochlorothiazide for blood pressure AM and Slozem PM, afternoon and evening it's Adcal-D3 and once a week risedronate sodium.

      Not surprising I rattle like an old tin can.

    • Posted

      Welcome to the club!!  My kitchen looks like a pharmacy!

      I use the drug interactions checker on Drugs dot com.  I'll pm you the link,  I forget whether they approve it when I post it!  

      You might find something.

  • Posted

    I wonder whether it has anything to do with Omeprazole.  I take Ranitidine and soon discovered it causes 'restless legs'.  I now take it once a day instead of twice and don't seem to be getting the restless legs
    • Posted

      Hi, I've been taking Omeprazole for long, long before Polymyalgia Rheumatica arrived. Plus this low grade fever feel is intermittent but persistent. (Don't tell anybody but a wee drop does help it) . . . Now please don't attack me!
    • Posted

      In that case it could be you have also developed an essential tremor - that is often helped by a small amount of alcohol (that's my husband's exuse anyway!). Muscle fatigue is one of the common causes - and that would fit with what I wrote in the other reply.  Low blood sugar is another cause - and I have similar experiences in the morning occasionally, together with feeling quite nauseated, which defintely improves if I can force something down despite the nausea. The low blood sugar will compound the muscle fatigue of course.
    • Posted

      Love it! Your husband sounds a sensible man! Muscle fatigue would seem a good thought but why start now? Low blood sugar another one but as a rule I run well on that and check up every six weeks of so but I have noticed a much lower reading at the start of the day, so that could fit. Again thanks for the input.
  • Posted

    Several people have complained about this sort of effect when on pred and the tendency is to blame the pred. It is a listed side-effect, mainly at higher doses and can be all the time or just at intervals. It is one that should be mentioned to your doctor apparently but it does tend to improve as the dose goes down.

    In fact, PMR can cause similar sorts of tremor and clumsiness so it is difficult to say 100% it is the pred. The PMR often causes difficulty with repeated or sustained actions however minor - like holding a cup or bottle for example. So it may be that you are noticing it once you start to need to use your muscles and they are being exhausted. I have my own theories about the reasons for the fatigue and poor muscle state and they would fit with the rest overnight and then starting to overexert them (in terms of their ability in PMR that is, not normal overexertion) during the day. The pred won't have much of an action in an hour, it takes about 2 hours to peak in the blood if it is normal white uncoated pred tablets, especially if you take them with food as you should.

    • Posted

      Thanks Eileen . . It sort of fits as when I wake up (on the right dose) I do feel great (compaired) but the moment I get out if bed it starts to kick in. I take coated pills and only use un coated ones to make up numbers. It does go, not sure when but I'll try and monitor it. It when it kicks in again say mid afternoon or yes, on exertion that I notice again.

      Any suggestions . . .

    • Posted

      If you are using coated tablets they take much longer to get into your system - anything up to 6 or 7 hours in some people. I have asked a research rheumy what she thought about using coated tablets overnight because of that lag in effect. I use a form called Lodotra which is designed to do just that: you take it at 10pm with a sandwich or something and it releases all in one go 4 hours later so the peak level in the blood is about 4am, before the body sheds the substances that cause the inflammation so the pred is there ready and waiting to "catch" them. It isn't available in the UK - but she did agree that it was possible you could use enteric coated in the same way.

      Some people find they avoid the side-effects by taking their pred at night - and using my reduction scheme very slowly (i.e. starting with the 7 day gap between days of new dose) there is no reason why you shouldn't reduce in 2.5mg steps so you wouldn't need the ordianary pred to make up a dose. Worth thinking about. 

      Apparently the company that makes the Lodotra aren't willing to do a comparison of their form with enteric coated used in the same way. I wonder why not??????????? ;-)

    • Posted

      Hello again Eileen - I was very interested to read your reply to David Melville in view of the problems I have been having. I havn't yet tried taking the Prednisolone at night. I thought I would give it at least a week back on the 15mg to see how it goes. Yesterday I had a bad day again with my head feeling quite dizzy, hot facial sweats and feeling really unwell but today I am much better so at the moment I seem to be having bad days every alternate day. I am now just three days into my 15mgs. Only went back on the 15mg on Thursday.

      I know I am nowhere near the reducing stage yet but please could you explain your reduction scheme to me ( not quite sure I understand when you talk about a 7 day gap between days of new dose) as I am not looking forward to the time when I have to start reducing as all my problems seem to have stared the minute I reduced to 12.5 but of course I had only been on 15mg for three weeks and from reading your replies I think that three weeks was much too short a period to be on 15mg. I thought if I could follow your reduction scheme when the time comes I might fair better next time. Thank you.

    • Posted

      Again I must say how interesting this is!

      i wanted to take my Prednisolone in the evening but Rhumi was emphatically against it (no reason), so I put it out if my mind. But it does make sense if the coating puts such a delay in. I know if I take Prednisolone at 7am and have breakfast at the same time I usually fall asleep again and then get up very late but feel good. So breaking the cycle would suite me.

      Wanted to dig a bit deeper into the body shedding inflammatory creating substances in the early morning. Is there any research on that aspect as it seems to offer the ability to tailor steroid intake to way of life.

       

    • Posted

      I should have looked further on the site before asking you for your reduction chart. I have just found it on the site and have taken a copy. Thank you for taking the trouble to put all that information out there for us to see. I will certainly keep this and try it when I get that that stage. Thank you. 
    • Posted

      A study was done in Germany on rheumatoid arthritis patients who were in hospital for some other reason to see the optimum time to take your prednisolone to minimise morning stiffness. They were woken and given the pred at various times overnight and into the early morning. The best results were achieved by taking ordinary non-coated pred at 2am, the peak blood level being found at about 4am - it is known that cytokines are shed at about 4.30am in a normal sleep cycle. Obviously no-one is going to find it easy waking at 2am, taking their tablets and then trying to get a decent night's sleep so a German drug company developed a formulation of pred with a special coating which, when taken within 3 hours of food or with a bit of bread and ham/cheese to create the correct conditions in the gut, disintegrates after 4 hours, releasing the pred just as if you had just taken it like any other delayed release medication. Taken at 10pm it arrives at the right time. That is the basic research I'm basing this on. 

      Having said people wouldn't want to get up at 2am - I do know people who take their tablets then because they are often up to go to the loo and they all say it helps them a lot in the morning. We have always emphasised that pred should be taken as early as possible in the morning - often patients aren't told to do that and wait until breakfast time to take the tablets since they need food with them to avoid gastric irritation. Then they wonder why it takes half the day to feel better and complain the pred isn't working. Many take the ordinary pills very early - 5 or 6am - with a yoghurt or a sandwich they've taken to bed with them and then go back to sleep for a couple of hours. By the time they get up they feel much better. 

      Since the coated pills take much longer to disintegrate - there are papers that show the pharmacodynamics, the rate at which they are absorbed into the blood and so on - it is resonable to suppose you can do something similar with them, it will depend on the person.

      I was having to take my medrol before I went to bed in order to get any relief before early afternoon - if I took it before bed I could actually do something in the morning. One of the medical consultants in the local hospital said "That is very bad..." - I think they believe the side effects are greater and with ordinary uncoated tablets the blood level will peak in the middle of the night and some people find that disturbs their sleep a lot. With coated tablets that doesn't actually apply - it isn't released until early morning, about the same time the body secretes cortisone, the natural corticosteroid. Pred should be taken early and in a single dose for just that reason, it best resembles the body's normal state. One lady on another forum had awful problems and her GP suggested trying taking the tablets last thing at night - I suspect she does go to bed quite late anyway! It worked brilliantly and her GP said he'd make a note of that for next time! The rheumy isn't the person trying to live a normal life but when you get a good one or a good GP they are willing to experiment a bit and see how you get on. What you don't share with the consultant won't affect his judgement - good or bad. 

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