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What are you doing for your immune system?

Posted , 11 users are following.

LayneTX
LayneTX

I was wondering if y'all are doing something special for your  immune system, to give it more support, boost, ...???

Like foods, supplements, essential oils?

I think I need to take Vit C, but I'm not sure what brand to trust.  I can't do the ones you can taste, the sweetner or maybe it's naturally sweet, but it messes with my reactive hypoglycemic tendancies.  Any suggestions?   I generally can't stand taking supplements, but now with PMR, I manage to take my Calcuim 1200 and Vit D3 5000 (now 2000).

Ha, but now that I can't taste... maybe it's not big deal... ;>)

 

2 likes, 23 replies

23 Replies

  • MrsO-UK_Surrey
    MrsO-UK_Surrey LayneTX

    Posted

    Layne, I didn't take any supplements whilst on steroids for PMR and GCA but relied purely on a good diet including lots of organic fruit and veggies (steamed).  I did have a teaspoonful of good quality Manuka Honey (at least UMF10) daily, plus a clove or two of fresh garlic crushed into my main meal, and a glass of warm water with a few squeezes of lemon juice first thing in the morning.  I had one severe throat infection during the five years on steroids starting at the high dose of 40mgs, but not one cold.  I remember being picked up by someone in his car one day and he had a terrible hacking chest infection - when I arrived home I immediately crushed some garlic into some hot buttered toast, and didn't succumb.  Even the germs were frightened off!!!
  • tina-uk_cwall
    tina-uk_cwall LayneTX

    Posted

    Hi layne, like Mrs o I have a mug of lemon drink daily, and 1 teaspoon of honey a day. I also take 500mgs of vit c plus the RDA of magnesium which will help prevent kidney stones because of the large dose of vit c. Regards, tina
  • gillian_25383
    gillian_25383 LayneTX

    Posted

    I never took anything as depressed immune system is just a side effect of predJust avoid people with active colds,go to GP if you have cold and make sure you tell doctors,dentists etc that you are on steroids and carry your warning card on you in case of emergency
    • LayneTX
      LayneTX gillian_25383

      Posted

      you know, after hearing people here talk of a warning card, I asked my pharmacist, and they didn't know what I was talking about!

      I do have a red wrist band with my info on it that I used to wear when I used to run and taped a message on it about being on Pred.

      Yes, I'm avoiding people when I can. I haven't had a cold in years (knock on wood). 

      If I feel a bit down I'll use essential oil called Thieves (YL).

    • Oregonjohn-UK
      Oregonjohn-UK LayneTX

      Posted

      It's a UK thing!  A small credit sized blue card with details of dosage and personal details including GP, hospital and NHS number.
  • faye______00403
    faye______00403 LayneTX

    Posted

    I take Omega fish oil pills, a centrum vitamin, and plant based

    calcium with vita D.   Calcium can do some ugly things to you.

    Ask your doc how much you should be taking.   If anyone is

    interested in the plant based I got it on Amazon, it's a little

    pricey but feel it's worth it.  I also haven't had a cold in years.

    I think most of it has to do that since I'm no longer working I"m

    not out in the general public much.

  • ladyofharley
    ladyofharley LayneTX

    Posted

    Hi Layne I just eat healthy and walk everday..I can also recommend Thai massage especially if you have a flair up.

    I was recommended it by my pilates instructor who has fibromyalgia as it works on pressure points all my pain goes after a session and I sleep well. It doesn't work for everyone but I love it. I am down to 5mg pred and have had PMR since feb 2014.

  • Susanne_M_UK
    Susanne_M_UK LayneTX

    Posted

    I'm with the Manuka honey and lemon brigade. I also use quite a lot of garlic in my cooking, nothing to do with PMR/GCA, I like the flavour. I also take a multi vitamin. I also take glucosamine (good for joints).

    And I try to stay clear of people with colds and other infections.

    I'm vegetarian and generally eat a healthy diet with lots of fruit and veg.

  • margaret22251
    margaret22251 LayneTX

    Posted

    I take Vit C and Vit D, as wheni was tested my Vit D was nil my doctor said, i buy them from Holland and Barretts, along with Manesium

    Just been tested again for my Vits and the doctor said alls good, But carry on with them, 1200 Vit C 400 Vit D the recommended dose.

    Also the Manuka honey and lemon.biggrin 

  • Oregonjohn-UK
    Oregonjohn-UK LayneTX

    Posted

    I maybe the old one out here!  I have always had a good appetite and still have - eat like a horse and gain no weight!!   But I have put on a little whilst on preds for the past year due to cutting back on exercise.
  • EileenH
    EileenH LayneTX

    Posted

    You do not need anything to "support" you immune system! It is working overtime as it is and that is why you are on pred to calm it down. The medications used in PMR and other inflammatory arthritides are to suppress your immune system.

    If you are eating a good diet with plenty of brightly coloured vegetables and fruit (in that order) then you will get enough vit C without taking supplements. Additional vit c will just be excreted in your urine as it is water soluble - so you do need some every day but the natural form of any vitamin is better for you than artificial versions.

    • LayneTX
      LayneTX EileenH

      Posted

      Oh! I knew immune was compromised but didn't know it was elevated so to speak. Wow. 

      I can't eat much fruit, I get hypoglycemic reaction and can't function too well, I'm now adding Parsley thanks to lady here advice. Love bell peppers high Vit C, but some question them as night shades to avoid for inflammation???

      i just found out about a food sensitivity test called LEAP.  Might ask doctos for that.  Do you know anything about that? 

      I fear Vit C supplements because I have reacted to them, perhaps they has sugars or even fake sugars cause issue. 

      I had very odd response lately with my now dry mouth no taste symptom (read Pred can cause, out of 146,000 people on Pred 600 lost taste), but I was able to eat fruit for a few days without affect! But yesterday it about knocked me out. Bummer. 

    • EileenH
      EileenH LayneTX

      Posted

      Fruit isn't particularly good in quantity as it has a fair amount of sugar, veggies are far better in that sense and should help you avoid your blood sugars swinging wildly and that is why I said "in that order". I eat very very little fruit. Always eat well balanced meals - protein and a decent amount of fat which will slow the absorption of the sugars and help avoid the peaks of blood sugar that are followed by lows.

      The dry mouth could be part of the autoimmune problem, some people develop Sjogren's syndrome or something similar. Speak to your dentist about the dry mouth - it doesn't do your teeth any good at all!

    • tina-uk_cwall
      tina-uk_cwall EileenH

      Posted

      Eileen, are you saying that our immune system is actually working well, in fact too well. I always thought that our immune system wasn't working well and that's why we have this auto immune condition because it doesn't know what it's doing and it isn't working properly. I currently take 500mgs of vit c daily to "help" my immune system. If my immune system is actually working well is this suppliment unnecessary.

      i still haven't grasped our condition yet. I know that PMR is the name given  to the pain etc that is a result of the inflamation caused by our auto immune condition, but what is our auto immune condition called then?! Regards, tina

    • EileenH
      EileenH tina-uk_cwall

      Posted

      Everyone thinks of the immune system as being something that just protects us from colds and other infections - and that's where the vit C theories come in. In fact, the only people who are helped by massive doses of vit C are high performance athletes who are performing in cold conditions! It doesn't make any measureable difference to the ordinary person in the street. Psychologically maybe, scientifically, no.

      In autoimmune disease for some reason the immune system gets onto the wrong tracks and is unable to recognise your body as "self" - no-one knows why or how - but the result is that the white blood cells that normally attack foreign invaders such as viruses and bacteria start to attack the body's own structure. It may be muscle cells or nerve cells or joint linings - which it is depends on the illness you are said to have. The names of most of these autoimune disorders are more directed at covering the signs or symptoms and some are named after the doctor who first recognised a set of symptoms as being a disease. 

      I think of autoimmune disease as a long shelf with a whole range of signs and symptoms - and an assortment of them are handed out to the patient. Which disease they are then said to have is related to the picture created by the symptoms - because as yet they haven't identified any diagnostic things other than those symptoms.That's why they are difficult to diagnose and even more difficult to treat - you have to know the mechanism to develop treatments.

      Many of them burn out in time and go into remission - but can flare up again at any time if you are unlucky. if you have to have an autoimmune disorder PMR and even GCA are not bad ones to have - they can be managed much better than many of the others even if pred isn't a Smartie! There are far worse drugs. PMR, in particular, doesn't kill and is very likely to go into remission on its own although it may take several years.

      So in some ways you can say it isn't that our immune systems aren't working well - but that it is working far too well but not doing the job it is meant to but being a vandal. I wouldn't bother with the vit C - if you are eating a good diet with lots of rainbow colour veggies and a bit of fruit you'll be fine. Did you know that potatoes are the traditional best source of vit C in the UK? And that they often provide more vit C than that kiwi you fetched from the fruit counter?  

    • gillian_25383
      gillian_25383 tina-uk_cwall

      Posted

      Inflammation in rheumatic conditions is when your immune system overeacts and attacks normal tissue which is why the aim of medication is to damp down the immune system
    • tina-uk_cwall
      tina-uk_cwall EileenH

      Posted

      Hello Eileen, thanks very much for the explanation. I've actually just got off the phone speaking with an old friend from London. She has just told me that another lady we know has just been diagnosed with PMR but isn't receiving any treatment at the moment as she's on warfarin? Also, another friend of hers is now into year 20 of preds, dose well into double figures. He has something wrong with his legs?

      thanks for the advisor vit c, but I will still take my vit d and magnesium. Regards, tina

    • EileenH
      EileenH tina-uk_cwall

      Posted

      What on earth has being on warfarin got to do with treating PMR or not? I take an equivalent to warfarin and pred - have done for over 3 years and don't appear to be falling apart! 

      There are some things where you are on pred for life - with little chance of being able to stop it. Hence my scepticism about "taking pred for more than a couple of years will be far too dangerous"...

      And yes - you need the vit D and magnesium - and calcium too.

    • tina-uk_cwall
      tina-uk_cwall EileenH

      Posted

      Eileen, apparently the rheumatologist wants her on pred without delay but the heart specialist has said no! When Karin told me this story I immediately replied that many of the members of this site took both, I'm glad you have confirmed that both drugs can be taken successfully.

      thanks, tina

    • EileenH
      EileenH tina-uk_cwall

      Posted

      I think maybe she needs a different cardiologist - since without pred the systemic inflammation will probably be doing damage to her cardiovascular system which really isn't a helpful concept is it. 

      Any idea what she is under the cardio for? I have atrial fibrillation - almost certainly due to the autoimmune part of PMR. I suspect my cardiologist would have a fit if anyone suggested no pred...

    • tina-uk_cwall
      tina-uk_cwall EileenH

      Posted

      Hi Eileen, no idea, other than she has had a cardiac problem for years and was diagnosed with PMR 3 weeks ago. However, definately going to email Karin with this info and hopefully she'll pass it on. Regards, tina
    • faye______00403
      faye______00403 EileenH

      Posted

      My stepson is a pharmacist and says that you definitely need

      calcium.....pred leaches calcium out of your bones and if you

      are on HTCZ (a water pill) that washes the calcium away

      the body only takes the calcium it needs and the rest stays

      in your body in sometimes bad places.....kidneys, heart etc.

      So really iimportant to ask doc hoe much calcium to take.

      I take a plant based calcium and hopefully avoiding

      some of the issues with too much calcium.

      I also thought that PMR caused the body to stop making

      cortisol and the idea was to get the adrenals working and

      making cortisol again....

    • EileenH
      EileenH faye______00403

      Posted

      I always emphasise the importance of taking the calcium and vit D supplements we should be given by the GP. Those tablets are the appropriate amount to take on top of a normal diet - but there are still some people who can't even take that much. If you need more vit D then that should be added as single tablets - not more of the Natecal or Calceos which are the calcium/vit D supplement. 

      PMR in itself doesn't affect the adrenals at all as far as it is known. There are some experts who have suspected that poor adrenal function is what CAUSES the PMR (exactly the opposite) but there is no real evidence of that either - it has been looked for.

      What happens is that when there is enough artificial corticosteroid present in the body then the adrenal glands no longer produce cortisol - not a direct effect on the adrenals themselves but a suppression of the hormones that switch the production on and off - something called the HPA axis (hypothalamus, pituitary, adrenal axis). It is a bit like your central heating boiler - as long as the room is warm enough the thermostat tells the boiler that there is no need for any more heat to be produced. In the body this happens when more than about 8mg of daily pred is being taken. The more above this level you are taking the more likely it is you will suffer side effects - the side effects of pred are due to the excess pred present in the body. 

      Pred is excreted from the body quite quickly but the antiinflammatory effect remains for 12-36 hours. Once the body is pretty much clear of pred the side effects are less - and that is part of the reason for being told to take your pred in a single dose early in the morning. In some illnesses it is possible to take the pred dose as a double dose on every second day - which leaves long periods when the body has no pred present and reduces the side effects. However it isn't thought to work well in PMR and GCA.

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