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Thankyou all for advice reducing steroids the less painful way

Posted , 7 users are following.

carol16456
carol16456

Saw my doctor yesterday my bloods have levelled since last time ,so we have decided that I should try to reduce .5 mg for a week or so then if all has settled to try to drop another .5 so that by the next blood test the middle of March I would have gone to 12mg of pred from 13 . She has also given me calcium tablet and a tablet I take once a week for the bones ,and to help with neck ,head pain Anotryptolin to take at nights .

Was a bit shocked last night to find that some of my nails while filing them disintegrated down into the pink area ,and are quite sore .Wish I had asked for calcium earlier .Am not a milk drinker or lover of yoghurt ,so anyone new on this eventful journey and who doesn't have dairy products please remberance the need for calcium .Also next blood test will involve a check on the chances of a  diabetas blood level indicator .So hopefully my moaning and groaning will not be coming to you all for much longer . Will be trying to go the Chertsie group in a couple of weeks which will make me realise how lucky I am to have this PMR just in the upper body as i realise reading this forum so many are much worse of than me

2 likes, 18 replies

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  • pat38625
    pat38625 carol16456

    Posted

    Hi Carol, so glad you are getting sorted out.  It must feel good.  Good luck on your PMR journey.     Pat
  • EileenH
    EileenH carol16456

    Posted

    Good luck!

    Sounds like you are one of the unlucky ones when it comes to nails - all the time I was on higher doses of pred I had the best nails of my life, hard and easy to file into a nice shape. Now I am down to below 5mg they are back to being soft and my left thumbnail tears particularly easily. It had to be the pred making them hard, the calcium is still the same. Other people have said the same.

    • ptolemy
      ptolemy EileenH

      Posted

      I think it is the pred making our nails so good, a friend with PMR said her nails are fantastic too. I am even thinking of decorating mine they have grown so much. One plus in pred's favour.
  • tina-uk_cwall
    tina-uk_cwall carol16456

    Posted

    Hi carol, have you actually had a bone density scan? Just asking because if you've been prescribed alendronic acid, just make sure that you have all your teeth sorted out prior to taking as AA has a nasty side effect which is narcosis (don't know if I spelt that right) of the upper and lower jaw bone, which later could make teeth extraction a problem later. But, that aside I'm really pleased that things are looking up for you I bet you're walking around with a big smile on your face and why not, pre diagnosis and at the very early stages we're so anxious, scared and in such pain that it's just great to great such possitive news. Christina 
    • EileenH
      EileenH tina-uk_cwall

      Posted

      "necrosis" Christina, narcosis will put us to sleep - not that that is a bad idea...

      There are so many words in medicine and science that sound or look the same - it is SO confusing even for those of us who worked in the field. Someone posted elsewhere that her cardiologist said she had "pits and stars" - I still haven't worked out what it should have been!

    • tina-uk_cwall
      tina-uk_cwall EileenH

      Posted

      Eileen, I've told you before, I aught to stick to baking cup cakes and knitting fluffy toys! Regards, christina 
    • EileenH
      EileenH tina-uk_cwall

      Posted

      In that case - send me a cupcake - wheat-free and low carb of course ;-)

      I'm impressed that anyone with PMR can still knit - I had to give it up years ago as it caused me so much pain in my arms. I suppose I might manage again now but what would I knit? The grandchildren are all way past sweaters and toys...

    • tina-uk_cwall
      tina-uk_cwall EileenH

      Posted

      Something for yourself! That's what you should knit, hell haven't we been through enough that we should treat ourselves once in awhile. Christina 
    • EileenH
      EileenH tina-uk_cwall

      Posted

      I have more clothes than I wear anyway! To be honest - I would either have to learn how to follow a German'language pattern or would have to wait until we are in the UK! All such items were chucked when moving from a very large to a large and then a small house. The rest went when we moved here!!!!

      The treat was booked this morning - 3 weeks in China in June/July ;-) Wasn't going to waste having our flight paid to attend a meeting there...

    • tina-uk_cwall
      tina-uk_cwall EileenH

      Posted

      Wow, that's fantastic, you have a brilliant time, but I'm sure I'll communicate long before then. Christina 
    • EileenH
      EileenH tina-uk_cwall

      Posted

      I was going to say there are better things to spend money on than clothes - but I may have to spend some money on clothes as I suspect there may be a few pairs of trousers that will need duct tape to make them stay up! I do have some underwear that will be packed and then treated as disposable...
    • Mrs.Mac-Canada
      Mrs.Mac-Canada EileenH

      Posted

      What a wonderful trip to look forward to.  I'm envious but very happy for you.   I hear clothes are very inexpensive there. Maybe you can treat yourself for having lost all the weight.  Seems the right thing to do to me😊
    • Sheilamac_Fife
      Sheilamac_Fife EileenH

      Posted

      Believe me, forget the German language patterns for knitting OR sewing! Nightmare! Even the German ladies have problems... We are sooo lucky! Hehe..wink
    • Sheilamac_Fife
      Sheilamac_Fife EileenH

      Posted

      however, clothes are very cheap in China!... You wil love it I am sure, fascinating country. smile smile
    • EileenH
      EileenH Sheilamac_Fife

      Posted

      Quite - Sheilamac, they have always resembled an alien language to me. AND they knit in a most peculiar way tooo...

      I may have lost a lot of weight but judging by what I saw in S Korea and Japan I might have to lose rather more! Both ladies and the clothes in shops are very dainty!

    • Sheilamac_Fife
      Sheilamac_Fife EileenH

      Posted

      Hahaha... I think you are right on both counts... When I was living in Germany a knitting friend kept coming to me to ask about her pattern cos she didn't understand it... What hope had I! I just said what I thought I would do if I had a sensible English language pattern!  Says it all. So happy to be home for lots of reasons.... smile
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