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Vitamin Regimen - PMR

Posted , 18 users are following.

gilman
gilman

I know that calcium supplements are essential, especially during treatment with Prednisone.  

I am am curious what other supplements people are taking and whether or not you believe they have helped.

0 likes, 78 replies

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  • LayneTX
    LayneTX gilman

    Posted

    For me:

    calcium 1200, heard take 1/2 dose in morning, 1/2 evening to absorb. 

    Learned later, it can affect absorption of meds, so perhaps not take with meds. Citrate suppose to be easier to absorb.

    Vit D 5000, because blood test said it was low, then dropped to 2000 after next test.

    i wasn't doing K2, but now have a bone formula that has Calcium, D3, k2 and magnesium.

    At first taking magnesium alone (all supplements I took were individual strengths so I could manage them), it caused my poop to be really mushy and gross!!! I lived with this for months thinking it was Prednisone. So, I'm trying to educate others wink 

    So now, probiotic and sometimes I cut back on magnesium and bowels much happier. 

    Today Rheumy said take fish oil with my calcium and D to help absorb even more (why just now telling me this?)

    Curcumin upset my stomach, so now I just use Tumeric and black pepper in my eggs.

    I WISH I had Dexa scan when first put on Pred! I had scan year later and I do have osteoporosis.  I used to be a runner, so I was shocked. So I recommend scan as soon as possible...gee I say "so" a lot, getting that from my hubby! Ha! 

    • Anhaga
      Anhaga LayneTX

      Posted

      Just read recently that certain forms of B vitamins can help with magnesium metabolism.
  • Daniel1143
    Daniel1143 gilman

    Posted

    Have tried numerous diets, and most recently, have gone gluten free. Had distant hope that it was actually gluten intolerance and not PMR. I also drink and eat a bundle of anti-inflammatory foods such as tart cherry juice and avocado. In truth, none of it works for PMR, but being on a strict diet has kept my weight down with minimal face puffiness.

    i do fake calcium and magnesium twice a day and with my prednisone in the morning.  Did I read that the calcium causes absorption problems for the press?

  • lodgerUK_NE
    lodgerUK_NE gilman

    Posted

    Pred for Breakfast and Calcium for lunch is the golden rule.

    However, I was prescribed the calcium supplement and then discovered I did not need it at all.  So I suggest you get your calcium checked as too much can cause problems.  ie pseudo gout - caused by calcium crystals which was when I discovered I did not need the supplement - but GP regularly checked it with blood tests.

    By the way, I have just been told, after a major problem following surgery by a Consultant, that when you are prescribed any anti-biotic when finished take a pro-biotic organic yoghurt with L-acidopolous in.  (I found one made by Yeo Valley). It does not freeze and does not have a long life as the good bacteria is live.   This helps to replace the good bacteria  faster, as  anti-biotics  kill both good and bad.

    You live and learn. idea

     

    • MrsO-UK_Surrey
      MrsO-UK_Surrey lodgerUK_NE

      Posted

      lodger, I so agree about eating the 'live' probiotic yoghurt after a course of antibiotics - something I learned from a boss years ago whose sister was a surgeon.  The good bacteria from the yoghurt helps to restore the natural bacteria in the tummy after the onslaught of antibiotics.   Plain Yeo Valley organic 0% fat, sugar-free (apart from the natural occurring sugar in the lactose) is my favourite - I have sufficient fat from other sources!  With a dollop of Manuka honey, it's a favourite of mine, but then I've probably already bored the pants off everyone about it in the past! 
    • ptolemy
      ptolemy MrsO-UK_Surrey

      Posted

      I love yogurt and manuka honey. I heard on a TV show the other day that one company makes seventy five per cent of yogurts including Yeo, Marks and Spencer and Lidl. I assume they must have different recipes though looking at the various prices! 
    • faye______00403
      faye______00403 MrsO-UK_Surrey

      Posted

      Don't most if not all yogurts have live cultures and isn't that

      the thing to look for?  I take pro-biotics every day.  They

      help regulate your system and I understand do good things

      for your body......

    • EileenH
      EileenH faye______00403

      Posted

      If a yoghurt doesn't have live cultures it would be sour - but some have added lactobacillus as well as the culture that makes the yoghurt. They are also probiotics - and taking probiotics is probably better than a yoghurt as there are millions and millions more in a probiotic capsule than in a bowl of yoghurt. It is disputed by some experts that a yog can make any difference as the numbers don't add up.

      Pasteurised yogurts (those that keep without being in the frig) don't have any live cultures. 

      ptolemy - I wouldn't be too sure that they have different recipes on the base of the price - but maybe that is me being extra cynical. The only different ones really are Greek yoghurts. Greek ones must be made in Greece (like champagne must be made in Champagne) and the ones made anywhere else must be labelled "Greek-style". They have different qualities though - less whey and stuff so less lactose. The cultures probably vary a bit too.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey faye______00403

      Posted

      Faye, yes all yoghurts are 'live' in that they contain cultures but they can all contain slightly different cultures.  The one I have contains Lactobacillus Bulgaricus and Streptococcus Thermophilus, which are not normally found in the gut but it is believed that they can stimulate the friendly bacteria already present, helping to keep the gut healthy.

      There is also a bio yoghurt containing Bifidobacteria and Lactobacillus Acidophilus cultures and this is believed to be especially useful when suffering from certain stomach viruses, UTIs etc.

       

      Any yoghurt that has been treated to lengthen its shelf life (heat-treated or UHT) is not 'live' as the treatment kills the friendly bacteria.

    • faye______00403
      faye______00403 MrsO-UK_Surrey

      Posted

      I do eat yogurt but largely rely on pro-biotics.  The book

      the lady in the U.K. put out about PMR (I'm so bad with names)

      talked about a doc that came up with the theory that we get

      PMR because of something called "leaky gut"  She recommended

      drinking Aloe juice which I did for a few months.  She seemed to

      think you could get off pred sooner if the leaky gut was treated.

      However I didn't get any great reduction in my pred dose.  Has

      anyone else tried the Aloe?  Wouldn't it be wonderful if it was

      that simple?

    • faye______00403
      faye______00403 lodgerUK_NE

      Posted

      Thinking back....and I go back a long ways...I knew years

      ago to eat yogurt after a round of anti-biotics to prevent

      the dreaded yeast infection which has always been the

      bane of women.....did we forget about that?

    • EileenH
      EileenH faye______00403

      Posted

      Works topically too. 

      It is interesting that here in mainland Europe there is still great use of traditional remedies of all sorts and there tends to be an avoidance of Big Pharma unless really necessary. And the UK/USA tend to ignore any studies done here...

    • lodgerUK_NE
      lodgerUK_NE faye______00403

      Posted

      Might have been Kate Gilbert's. 'My journey with PMR'  I think it is called.

        It is not in PMR&GCAuk North East Support  booklet called  'Living with PMR&GCA' .written by patients for patients and medically checked where necessary.

       

    • lodgerUK_NE
      lodgerUK_NE MrsO-UK_Surrey

      Posted

      Mrs O

      The one I currently take, recommended by the Consultant (gastroenterologist) is VSL#3.

      Contains 450billion live billion live bacteria made up of 8 dfiferent strains.

       

    • faye______00403
      faye______00403 lodgerUK_NE

      Posted

      That's the one....Kate Gilbert's book.    I might see if I can

      find the other one on Amazon

    • LayneTX
      LayneTX faye______00403

      Posted

      My two cents on yogurt....

      I didn't know much about pill form, but now I'm an advocate!

      My Rheumy said, take at least 12 billion active cells and the refrigerated versions are best.  I have happier tummy now!!! It does say take 3 times a day, but I usually forget and only get it in with breakfast. 

      And I recently read use yogurt on your face for a hydrating mask for 30 minutes! I've done it twice and after my face does feel pretty awesome!!! 

      It dries to a clear mask. I use organic.

      I read the Greek style has more protein just because it's more concentrated, less water. Marketing! They will do anything for money! But heck, it is pretty good tasting! My dogs love it too. My doctor said no dairy, but I'm still sneaking in yogurt occasionally, yum! wink 

    • Anhaga
      Anhaga EileenH

      Posted

      This reminds me of when my middle child, older son, was in his mid teens and had acne.  The doctor prescribed tetracycline, but as soon as I realized that this was going to be a long term treatment, not a single course, I got concerned.  At that exact time a columnist printed a letter from a reader describing a traditional acne treatment.  The yolk of an egg applied as a facial mask.  So I bought son some organic eggs and he started using this.  Every evening when he was on the computer he would apply egg yolk to his face.  Very quickly his skin cleared up, never any trouble since.  Out of curiosity i tried it once myself to find out what it felt like, and it was surprisingly cool and pleasant!
    • Anhaga
      Anhaga faye______00403

      Posted

      Our guts are supposed to be a bit "leaky" as that is how the nutrients get into our bloodstream.  Problems arise when it isn't controlled and maybe toxins are also released.
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