B12 deficiency with RA

Hi

I have recently been diagnosed with rheumatoid arthritis and have been taking various drugs before and after diagnosis. A ppi(omeprazole) was prescribed to take before Naproxen (500mg twice daily) and methotrexate (10mg weekly) with 5mg folic acid 3 days later. I also have cocodamol if needed too. I try to avoid cocodamol (which gives me constipation!) and naproxen therefore ppi if I can...because I know it's best to limit their use alongside mtx. I have also had 5 steroid injections plus a week course of prednisolone since late December/January to help the widespread swelling/pain to subside asap!

My last blood test (5 weeks into mtx) revealed slight b12 deficiency -154. I actually asked for this (along with a cholesterol check!) to be tested as my symptoms were a-typical of b12 deficiency! I have been prescribed 50mg cyanocobalamin / day, orally (without actually seeing me and asking about my symptoms!) by my gp. I read the bottle which suggests an adult can take up to 3 a day and understand that these are readily bought over the counter so have decided to take more until I feel the benefit! I'd like to hear if anyone has had a similar experience and when it's best to take these i.e. : with or without food, early in the day, spaced throughout the day etc. ?

I have also read (in many reports) that omeprazole can be a reason to encourage b12 deficiency....even though my clinical nurse and my gp assure me that's not true!!!

I've also read that a low b12 and a raised folates blood test result suggests further tests should be done??

I realise I'm rambling on.....sorry 😆

Last edited by

8 Replies

oldestnewest
  • Firstly welcome and sorry to hear you're feeling bad.

    I would advise going back to your GP and requesting injections if you are symptomatic-BCSH guidelines recommend treatment under 200ng/l:

    r.search.yahoo.com/_ylt=A7x...

    There is a flow chart which recommends further investigation and treatment depending on whether you have neurological symptoms or anaemic.

    Good luck!

  • Thanks - the link didn't work though...The gp said they'll retest in 3 months when I asked about injections. Also I've read that cyanocobalamin is not as good as sublingual hydroxocobalamin. I might get some?

  • Hi

    Try this link:

    bcshguidelines.com/4_HAEMAT...

    If the tablets are 50mcg that is going to do nothing. If you take high dose tablets, it may well increase your levels but not be sufficient for improving symptoms as quickly, preventing any chance of getting injections.

    Sublingual methylcobalamin is widely available e.g. Solar or Narrows on amazon or in Holland and Barrett though.

  • Your levels may show a slight deficiency or they may actually show a significant deficiency - the B12 serum test is not a good indicator of whether you are deficient or not as measuring the levels of B12 in serum only give a window into a fraction of what can actually be going wrong. Your body needs to process B12 into specific forms so you can have lots in your blood but if it isn't the right form then it is useless. It also gives no indication about how your body is doing transporting the right forms of B12 to the cells where it is needed. The serum B12 test cannot be used as an indicator in isolation from a thorough review of symptoms.

    ukneqas-haematinics.org.uk/...

    mtx is known to affect the bodies ability to process folate which is why it is generally prescribed with folic acid. You are receiving large doses of folic acid so that a high folate reading at this point isn't likely to have any significance. Generally the worry with high folate is that it can mask the anaemia caused by a B12 deficiency (not not always among the first signs to appear) and so delay a diagnosis.

    Not having enough folic acid means that your body can't process and use B12 properly but at the levels of folic acid you are being given this shouldn't be a problem. However, it does appear that some people don't get on well with folic acid so worth bearing that in mind.

    mthfr.net/mthfr-c677t-mutat...

    PPIs are known to interfere with B12 absorption - on one level this is pretty obvious when you consider that the absorption process requires a certain level of acidity in the gut and PPIs are being used to lower this acidity. Its also worth bearing in mind the symptoms of low acidity have some overlap with the high acidity that PPIs are supposedly treating so they can actually make a low acidity problem worse.

    Your GP is obviously assuming that your deficiency is the result of lack of B12 in your diet - unless you are a strict vegan this is unlikely to be the case and it is much more likely that you have an absorption problem. This could be PA (autoimmune response that attacks the mechanism by which the body absorbs most of its B12 in the ileum) but it could also be lowering levels of stomach acid, gastric surgery that has affected the ileum, genetic defects affecting the ileum or drug interactions - like omeprazole - also NSAIDs - a family to which I believe Narpoxen belongs

    There also appears to be some evidence that prednisolone may have an adverse effect on retention of some B vitamins.

    Under normal circumstances the body is very good at recycling B12 - storing it in the liver and then releasing it in bile into the ileum but obviously this isn't going to be as efficient if you have an absorption problem so you are basically a leaky bucket - not taking in much more B12 and using up your reserves - a full blown B12 deficiency may take years to develop from an absorption problem but towards the end the symptoms start to snowball.

    B12 is something that you can't overdose on - hydroxocobalamin is used to treat cyanide poisoning by administering 5g intravenously over 15 minutes with a second dose 30 minutes later. That's 100000 times the amount of cobalamin in the tablets you are taking - I'm assuming that you actually mean 50mcg rather than 50mg.

    There are some concerns about taking high levels of cyanocobalamin but that is taking around 200+ x the amount you are currently taking, and this seems to relate to specific genetic intolerances to anything containing the cyano molecule. The bond is an extremely strong one which is why hydroxo works to treat cyanide poisoning - result is cyanocobalamin.

    !% of B12 is absorbed outside the ileum so sometimes flooding the gut with really high levels of B12 can help - but you'd need to be taking at least 50 tablets of the strength you have for that to have an impact, and it isn't something that works for everyone.

    I think you really need to make an appointment with your GP and try to push back on the assumption that your deficiency is diet related. Take along the BCSH guidelines secondchance mentions above - particularly the summary on p1 and the treatment regimes on p8 ... and also take a list of your symptoms. The pain you are experiencing with the arthritis should not be ruled out as being related to a B12 deficiency - and may be related.

    pernicious-anaemia-society....

  • Thank you for your comprehensive reply. To be honest I was thinking of getting the 1000 sublingual hydroxocobalamin and just taking it! The gp said no to injections and to take 50mcg cyanocobalamin and have blood test in 3 months - didn't want to budge!! I'm now sitting here typing with a stinging / burning tips of my left hand!!! Btw- I've read about other people's reactions to alchohol with b12 deficiency plus methotrexate! I want to have a glass of wine tonight - first time out since new year! What should I have red or white?

  • I have R.A. and hepc. I've been taking omeprazole for years. I take nothing by Dr.'s for R.A. I only use herbs also herbs for hepc. I'm weaning myself off omeprazole with ginger root and licorice root. Turmeric, magnesium Glycinate and Hyaluronic acid for joints and pain. I feel better than when I was taking Dr.'s med.s Not putting down Dr.'s but one med. caused stomach ulcers take another med for that then that med caused other problems so another med for that and on and on and on. Till I was taking 12 meds. a day and felt like I was 100 yrs.old. Selenium gives me energy the others help with stomach and pain. Just saying I believe in finding what's right for you. I feel 45 yrs. old now and I'm 60. I did a lot of my own research and watched my Mother die a terrible long lasting wasting death with R.A. She was on a bag full of meds. and it didn't help. I wish you the Best and always get more than one or two opinions....PLEASE!! GOD BLESS!!

  • I totally understand how hard this is Moomin8.

    I have been all excited by the info on this website thinking how OBVIOUS it is. ( Thanks everyone)

    Then you rock up to the GP who has his head in his computer screen and shrugs off all suggestions that the testing is fallible. It's obviously so engrained in the medical training that blood tests are the Holy Grail.

    At least he glanced at the pile of scientific papers I had helpfully printed out, so maybe in some sleepless moment or if some other 'difficult' patient comes in, it may dawn that there could be something in this?

    I then gave up on the science and appealed to the heartstrings: 'If I was your wife wouldn't you at least give the loading dose a try?'

    Worst case scenario = expensive urine

    Best case scenario = she avoids having to stagger around permanently like a drunk

    So, I now have my loading dose under way, but the much more difficult task still lies ahead: Handling the rheumatologist who assures me that my drugs are absolutely fine and I just have some other illness. How can he now back down without losing face and faith in what he's been doing for years?

    No great words of wisdom as I'm in the same boat- just loads of empathy.

    There must be huge numbers of us suffering needlessly out there, so you are not alone.

  • I know the feeling! They just look at us as if we are a spot on the wall and how quickly they can remove the spot from their eyes! What goes around comes around. I FEEL FOR YOU ALSO!! WE GOTTA KEEP FIGHTING!!! I'm going to start cutting my blood pressure pills in half and my cholesterol in half. Try some oatmeal for cholesterol and garlic and turmeric again for blood pressure. I'M SO SICK OF DR. DRUGS!!! I KNOW THEY AREN'T GOOD FOR YOU!! I'LL BET ONE OF THEM HAS SOMETHING TO DO WITH THIS TERRIBLE LOSS OF FUNCTIONING!!! I'LL LET YOU KNOW!! YOU BET I'M GONNA FIGURE IT OUT ONE WAY OR THE OTHER!!!!!!!! GOD BLESS YOU!! AND THANK YOU SO--MUCH!! YOU WILL BE IN MY PRAYERS, PAOLINI!!!!!!!!!!!

You may also like...