Problems with Prenisolone, Tired, Frustrated

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New to this Forum and recently diagnosed. I am a 39 year old male and have recently been diagnosed with RA. I was given prednisolone just before Christmas and this took the swelling down but joints that previously wasn’t giving me grieve started to. My sleep pattern was also disturbed in that I was getting around 2 hours sleep before pain woke me up and then would spent time trying to get comfortable before giving up and getting up. My family live around 2 hours away and due to issues over Christmas I had to drive to see them 3 times in 6 days. I had no swelling but the day after each drive was a wipe-out for me, painful and exhausted did I do too much? or did prednisolone not work for me?. I did blame the 'done too much' until I went back to work, I reduced the prednisolone in line with the prescription and found myself at work feeling like that I had been spiked (punch-drunk, dizzy, drowsy, unsteady). As I have to drive quite a bit for work this left me feeling unsafe so I visited my doctor (very unsympathetic by the way) and he advised reducing my prednisolone quicker to come off it. Here the problem as I reduced prednisolone the swelling has started to come back and with more pain. I have read on this and other forums only positive feedback regarding Prednisolone, As anyone else had problems with prednisolone? it may be worth adding that I have had the steroid injection twice before and each time it only worked for around a week or so.

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14 Replies

  • Posted

    It does seem like we re always trying to work out f the RA is affecting adversely- or the meds we are given! It is frustrating!

    But the increasing pain, to the extent you can't sleep sounds like good old RA to me.you say you have recently been diagnosed. Have you also been prescribed a DMARD? Maybe it hasn't had time to work tet( 12 weeks) or maybe it isn't working and they need to try another. Prednisolone is only ever a stop gap though sometimes a long one. I too didn't have a lasting response to steroid jabs. About 7 and half mg pred works for me and once I taper down below 5 mg the joints react again.

    but I think it's all about finding which med/s actually hold the disease back .it took about 9 months for me, all the time with increasing symptoms. Then a biologic was added which has made a great difference and I am also nearly off orednisolone 21 months after diagnosis. So hang on in there to get the optimum treatment you can.

    just a tip on taking orednisolone- I read it s better to take it between 2 and 6 in morning if you hapoen to wake( take with food) as that mirrors the normal time our adrenals produce similar.

    hope you get something sorted.

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    • Posted

      Thanks for your kind words,

      I was pescribed 20mg Prednisolone to reduce to 15mg after 2 weeks then to 10mg after another 2 weeks then to 5mg after another 2 weeks just as a stop gap until i start on methotrexate.

      I am due to start Methotrexate next week although i have just received an answer phone message to contact my consultant regarding recent blood test (doing that today).

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    • Posted

      hello

      i am taking 5mg prednisolone a day for RA but i also suffer COPD if my chest is bad i take 50mg per day yes it takes the swelling down with RA so you need to work outwhats best for you it will affect your sleep patterns so take them as early as you can in the morning as for pain i take a pain killer but thats not often now my meds seems to be working carol

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    • Posted

      Was your blood test showing more inflammation?

      Some people have an adverse reactionto methotrexate but many,many are really helped by it-  but they're not often the ones writing on these forums! 

       

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  • Posted

    Hi never- ready predisilone is a antinflammatory I also think it suppresses the condition. I've pretty much overcome my ra through a program in UK. However I have taken pred and the shots worked fast but was short lived but less side effects and withdrawal than tablets.

    i took 10mg tab for 3 months and when I came off them albeit too fast I was paralizesd in every part of  my body the pain and inflammation was like never before. 

    After three weeks I could take no more pain so I decided to go it alone and experiment so I asked doctor for 5 mg tab and worked up untill the inflammation and pain was minimised up to in my case 15 mg then I reduced to 10 mg. I'd read that up to 10 mg showed much less side effects as in osteoporosis etc. I stayed at 10mg for weeks eventually reducing to 5 mg. I don't eat certain foods and have epsom baths. It's important to shower off the acid drawn from the body by the salts the following morning. You can get to a much better place with ra.

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    • Posted

      Hi Nathan, could u elaborate on which foods u avoid? I did the eliminating food groups but maybe I didn't do it for long enough etc. I'm in the UK too. I think the NHS could possibly save a lot of money by referring those willing to a nutritionist or alternative therapist to alleviate ra symptoms instead of throwing drugs and more drugs at us all the time. I've started a biologic cos I was desperate and eligible. But I'm still mentally struggling with pumping my body full of things that ultimately shouldn't b in it. Gemma.
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  • Posted

    HI, I don't have RA but PMR.  I have, however, been reading tons of stuff on how statins are  powerful anti-inflammatory drugs and in one double blind clinical trial of RA  patients on 40 mg Lipitor, patients reduced CRP in 6 months by 50% and the sed rate by 28%.  This sounds great to me so I am wondering if  you guys take statins?

        In the case of PMR it is more complicated because 5-10% of people who take statins get muscle problems, which is the primary symptom of PMR.  I have personally decided the problems are rather different and can be distinguished. I have restarted statins because that anti-inflammatory aspect is so appealing, but I suspect most PMR patients won't do that.  

        Statins sound much nicer than too mucy prednisone or metheltrexate.

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  • Posted

    Ummm, statin can actually cause muscle/joint pain, not reduce it - in some people that is.   I discontinued statins a few months ago, for urticaria rather than RA, it certainly helped with the urticaria but did nothing in reducing the pain from RA.   Tapering prednisolone varies from person to person.   Your taering regimine sounds a bit severe from my experience sounds rather severe to me, I'd be surprised if you don't have a reaction.   Also be aware that methotrexate can actually increase the pain, it certainly did with me and as a result I had to increase my prednisolone dose to deal with it - it didn't work!
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  • Posted

    I would like to ask the group something about prednisone, I only take it during flares and not everyday like some of you do. The pills I take are 200mg and kind of like a z pack. They last for 9 days and that is it. How much predisone can you take everyday? 20-50 mg sounds like a lot and then you have to spend months weaning yourself off, because of side effects? I have not experienced this. Under what condition does a doctor prescribe prednisone everyday?
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    • Posted

      Did`nt think you could get 200mg!  only 5mg and 1mg....this is extremely high dose.  when taking consatnt Prednislone for PMR like myself, steroids have to be lowered VERY slowly or the side affects are dire, and there will be a flare up!  On the PMR forum the slow/dead slow method is recommeded (if taking longet than 2 weeks)....hope this helps...good luck!
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    • Posted

      LOL, I looked again, it's 20 mg, not 200. So that makes 60 mg for 3 days, then I taper down to 2 for 3 days, then 1 for 3 days. Sorry bout that LOL
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    • Posted

      Hi river, during my recent flare that seemed neverending my gp prescribed 20mg oral pred for me for 2 weeks then 10 mg for another 6 weeks. The result of taking 20mg a day was enormous, I could function again, I was dreading cutting down tbh but it was ok. I've got another two weeks to take 10mg , now I'm dreading stopping them lol. No side effects yet tho!!!
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    • Posted

      Hi Gemma

      it s fantastic how oral pred helps a flare.

      i don't think you ll have to stop suddenly after 10 mg . You have to taper down off prednisolone.

      i was on 10mg for about 2 months then 7 half for 9 months while waiting for DMARDS to work. Since then have been decreasing 1 mg a month.

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