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cant understand too much about PMRiI

Posted , 6 users are following.

mary238
mary238

I was on 15mg for about 6 months ubtil i saw it was too long on here, 2 weeks ago i started 12.5 mg, i told doctor, how long shall i stay 12.5 please, then what do i do please, also doctor gave me a weekly bone tablet but not taking them at moment because he not gave me a bone scan although am 79 so i suspect my bones not good . Has any one had loose bowels on steroids and i still get very tiredbut no pain atmoment

0 likes, 18 replies

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  • EileenH
    EileenH mary238

    Posted

    The Bristol group say 15mg for 6 weeks, 12.5mg for 6 weeks and then 10mg for a year.

    The tiredness isn't really improved with the pred - the tiredness is due to the underlying autoimmune illness which the pred does nothing about. The pred is being used to relieve the pain and stiffness which is due to inflammation. Pred relieves the inflammation so helps the pain.

    What other medications are you on? I've never heard anyone find that the steroids themselves cause loose bowels but other medications the doctors often hand out when you are on pred can.

    • mary238
      mary238 EileenH

      Posted

      Thankyou Eileen, i expect the loose howels need to be discused with my doctor, i am on amlodipine, spirolactone doxazosin and statin and lansoprazole. Too many, but blood pressure not too good, also i heard someone got diabetus from steroids, anyhow i feel relief with no pain, shall i reduce byb1mg a day in 4 weeks, sorry to keep asking questions , thankyou
    • MrsO-UK_Surrey
      MrsO-UK_Surrey EileenH

      Posted

      Mary, I see you are taking the PPI (Proton Pump Inhibitor), Lansoprazole.  That caused diarrhoea for me, as can many other PPIs, and I was taken off all those that I tried pronto.  I relied on a daily 'live' yoghurt with my breakfast each day before taking the steroids to line my tummy from any possible steroid side effects in that area.

      Many blood pressure tablets can also cause a loose bowel - I have recently had to stop one BP pill (Diltiazem) for this very reason.  Still not quite back to normal on the remaining pill but much better.

      Yes steroids can induce diabetes but it can help if we avoid eating too many refined carbs such as in potatoes, white bread etc - as well as incresing steroid-induced weight gain they turn to sugar in our bodies and could add not only to steroid-induced weight gain but also the the risk of steroid-induced diabetes.

      Trying a reduction of just 1mg a day after another couple of weeks at 12.5 should prove successful for you - if you experience any returning pain immediately following the reduction that can just be due to withdrawing the steroid and should disappear within a few days.  Just be sure to take things very easy around the time of the reduction to give your body chance to get used to the new dose.  Good luck!

    • MrsO-UK_Surrey
      MrsO-UK_Surrey EileenH

      Posted

      Eileen, sorry about the post addressed to you but intended for Mary - brain not in gear.  Teaching grandmother to suck eggs........!
    • mary238
      mary238 MrsO-UK_Surrey

      Posted

      Mrs 0 thank you so much, just noted that what you wrote about carbs, that probably means white rice as well. Although I dont suppose everyone gets it , diabetus, do they? I feel more happier when i come on here. Thank you all very very much
    • MrsO-UK_Surrey
      MrsO-UK_Surrey mary238

      Posted

      Mary, no everyone on steroids for PMR certainly doesn't get diabetes.  I'm in touch with a lot of sufferers and very few have been unlucky enough to succumb to this side effect of the steroids.  Those who have a very close family member with diabetes  might possibly be more at risk.  And certainly we can help ourselves by watching our refined carb and sugar intake.

      It is difficult to answer your question about how many weeks you personally will take to get from 12.5 to 10mgs as our bodies are all different and therefore can respond differently to the treatment.  But if you try just a 1mg reduction after a couple more weeks and find that works, then you can repeat with just a 1mg reduction another few weeks later.  In this way you can easily spot at which point the inflammation might start running away again and quickly return to your previous dose.  It will very much depend on how you feel, and if you had raised blood test markers at the outset, ideally these should be repeated before each reduction.   I hope that helps.

    • EileenH
      EileenH mary238

      Posted

      By no means everyone develops diabetes with pred - in fact I suspect it is often people who are overweight to start with and who eat a poor diet with a lot of processed carbs such as bought cakes, bread and so on. Many baked goods from shops are made with something called high fructose syrup, made from corn in the USA and wheat in the UK. It makes the baked goods keep for months instead of weeks and is cheap. Unfortunately it makes cells in your body resistant to insulin and many overweight people are already at that stage. Pred probably makes this progress faster.
  • debbie27473
    debbie27473 mary238

    Posted

    Hi Mary

    If you read through some previous discussions on this site, you will see that everyone who has tried to reduce preds too quickly has terrible problems with returning pain. 1mg drop per week sounds horrendous! I am now on the slow reduction programme that Eileen recommends and so far so good. This involves taking a 1mg drop on day 1 then taking your old dose for 6 days then new dose on day 8, then old dose for 5 days, then new dose on day 14, old dose 4 days etc. Before I started this I could not get below 13.5mg. I am now on 12.5 and starting my next decrease to 11mg. The tiredness flares up if I overdo it for a day or so. Pacing your activities comes very hard but seems to work. Do what you have to do in small chunks with plenty of breaks. This means things take longer to get done but a bit like the pred reduction you get there without the pain!

    I too have high blood pressure and I have definately noticed looser bowel movements since starting medication for this. I am currently on Furosomide and Lercanidipine.

    Unfortunately gp's do not seem very informed about the progress of this disease and it's effects on patients. They focus on getting you off of steroids and can't understand when we have problems with this. Keep posting on this website and read other peoples posts as often as you can. For the rest of us it is a lifeline. Only other people who are going through this can truly understand. There is always someone who will read your query who has been through exactly the same thing and will offer you their support and advice. Good luck, Take care, Debbie

    • mary238
      mary238 debbie27473

      Posted

      Thank you so much, I am getting a lot of help here, also i tell my doctor. I cant thank everyone enough, by the reduction plan how many weeks will it take to get from 12.5 to 10, been trying to work it out but keep getting in muddle, sorry about these questions. Thankyou
    • EileenH
      EileenH mary238

      Posted

      Probably just over 2 months - it depends on how you feel. If it goes well then you can do it a bit faster but I was very sensitive to the drops and always started at 1 day new, 6 days old. If you aren't as sensitive you could start with 1 day new, 4 days old and also finish the reduction at 1 day old, 4 days new and go onto every day new. Then you start on the next 1mg drop in exactly the same way.
  • christine26681
    christine26681 mary238

    Posted

    Hello Mary,

    I had loose bowels when I first started on pred. Things normalised when I was down to 12. I wasn't on any other medication. It is listed as a potential sode-effect

  • MrsO-UK_Surrey
    MrsO-UK_Surrey mary238

    Posted

    Mary, I see you are taking the PPI (Proton Pump Inhibitor), Lansoprazole.  That caused diarrhoea for me, as can many other PPIs, and I was taken off all those that I tried pronto.  I relied on a daily 'live' yoghurt with my breakfast each day before taking the steroids to line my tummy from any possible steroid side effects in that area.

    Many blood pressure tablets can also cause a loose bowel - I have recently had to stop one BP pill (Diltiazem) for this very reason.  Still not quite back to normal on the remaining pill but much better.

    Yes steroids can induce diabetes but it can help if we avoid eating too many refined carbs such as in potatoes, white bread etc - as well as incresing steroid-induced weight gain they turn to sugar in our bodies and could add not only to steroid-induced weight gain but also the the risk of steroid-induced diabetes.

    Trying a reduction of just 1mg a day after another couple of weeks at 12.5 should prove successful for you - if you experience any returning pain immediately following the reduction that can just be due to withdrawing the steroid and should disappear within a few days.  Just be sure to take things very easy around the time of the reduction to give your body chance to get used to the new dose.  Good luck!

  • blodwyn
    blodwyn mary238

    Posted

    Hello Mary,

    I'm sorry your feeling unwell.I'm afraid that with this condition you are likely to feel tired.I find I have to adjust any activity accordingly and do things in small doses.

    I'm concerned that you think your bones are not too good but you are not taking your weekly medication.I think you probably need to push your GP for a bone density scan to determine your bone condition.I've just had one and to my horror have found that I have a loss of bone density in my spine although my hips etc are fine.

    I've now decided to stop climbing up ladders to decorate my kitchen and to take the weekly medication I've been given plus my vitamin D and calcium medication as I realise a fall could be devastating and could ruin the rest of my life

    I'm just glad I found out as I've recently moved house and have been doing a lot of DIY up stepladders etc.

    My GP says that how you feel is more likely to determine your dosage of Pred rather than an ESR level and allows me to decide for myself.Try to get your GP to explain to you what's going on.

    Just because you're 79 doesn't mean you shouldn't be helped to understan as much as possible about your condition.

    I hope this helps.

    • EileenH
      EileenH blodwyn

      Posted

      Blodwyn - the fact you have reduced bone density in your spine doesn't mean you are going to crumble next week! I have osteopenia in a couple of vertebrae and have done for over 5 years though it hasn't changed whilst on pred. It doesn't stop me skiing! I rarely go up stepladders nowadays - but that is more to do with the PMR and fury at a husband who didn't come to see if I was OK when I fell backwards from a stepladder when decorating (he was in the next room, even he couldn't have missed the swearing!). There are professionals for that.

      The main reasoning behind the "avoiding devasting breaks" is directed at hip fractures in later life which often are devastating because many elderly ladies (and gentlemen) in the past just gave up exercising - that is one of the biggest risk factors. They are also rarely outdoors to keep vit D levels up - though in fact by 70 we don't make much in the skin anyway and really need supplements. And they drink very little, both because as we age our sense of thirst fades and because many don't want the bother of having to get up to go to the loo, especially when they are frail. AS a result they become dehydrated.

      Studies have shown that the most effective ways of avoiding a broken hip include keeping muscle tone good by simple exercises, many of which can be done sitting, drinking sufficient through the day andkeeping vit D at a good level in the blood (this alone is one of the most effective measures). These, plus removing trailing cables and loose rugs, making sure lighting is good (the eco-friendly rubbish bulbs that aren't are a menace) especially on steps of any sort and wearing well fitting SHOES not "carpet slippers" will achieve a safe environment in the home. And of course - no standing on chairs as one of our 90 year old members on another forum did! A sturdy step ladder with a hand rail is best if you must go up one to hang the curtains!

    • blodwyn
      blodwyn EileenH

      Posted

      Thanks Eileen,my answer too not enough exercise on retiring for the third time was to get a dog who is 15 weeks old now.I've never had a problem climbing ladders since living 17 years on a sailing boat and climbing harbour walls with a rope in my hand.The problem is that you forget that you are no longer young and have to take more care.As for standing on chairs, as a long standing H&S rep.for many years and a Retail Training Manager, standing on chairs at any time is a major no no in my book.

      The biggest danger in the home is carpet slippers so I never wear them although I always wear shoes as I am diabetic.I try to keep my vitamin D levels up as I'm mixed race and dark skinned.I have a very good decorator and from now on he'll be doing any decorating for me.

      Once again,many thanks for the advice.

    • EileenH
      EileenH blodwyn

      Posted

      Preaching to the converted then!! However - I respond to such posts as much for the benefit of others looking in as you personally!

      Retiring for the third time? The first attempt at semi-retirement is doing us both just fine! Nothing would entice me back to employment ;-)

      Enjoy yours!

    • blodwyn
      blodwyn EileenH

      Posted

      Hi Eileen,

      Yes of course I understand that our comments and observations are to benefit all.

      Not everyone is well informed and I think you are doing us all a good service.

      Mny thanks

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