Other Autoimmune diseases and PA

Hi all

I've been PA diagnosed for a year now and have 8 week injections (could do with more frequent ones but it was a fight to get 8, I don't think many GP's really understand the effects the disease has on us)

However the last few months I have started suffering with bad achey, stiff joints and painful muscles. My GP has told me to keep and eye on them and see how it goes but after doing my own research, I have found out the other AI diseases such as Lupas and Rheumatoid Arthritis can develop.

Does any one else here have any experience with these other symptoms and / or going through a diagnosis of some kind?

Thanks!

Chloe

6 Replies

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  • Hi chloeg91. Yes, you're right. People with one autoimmune disease can go on to develop others - unfortunately, they can tend to come in clusters (though it's not inevitable that one autoimmune condition leads to another).

    I've looked at your past posts and so first, just a quick thought. When you were originally diagnosed you had neurological symptoms - after the loading doses, did you GP prescribe every other day injections until no further improvement (it looks like not)?

    If not, then there has been a 'missed step' in your treatment - the every other day regime (following the loading doses) for those with neurolgical symptoms. If you are still having neurolgical symptoms (or they return before your next injection is due), then it might be worth returning to your GP and asking him to put you on this regime. Not an easy task, I know, Since most GP's have never heard of this regime and even when it's pointed out to get to them, they seem to be reluctant to prescribe it.

    At the end of this reply I'm going to post you some links to information and evidence that you'll be able to share with your GP if you think you were initially undertreated. In terms of treatment guidelines and B12 prescribing information look at the BSH Cobalamin treatment guidelines and the BNF guidelines ( prescribing information in the BNF guidelines is the second item down-GPs don't often read this far so you might have to point it out to him - this specifically states every other day injections until no further improvement when neurological symptoms are present).

    If you do still have neurological symptoms, these can also be caused by many other things. It would be usual for a GP to refer to a neurolgical consultant, in these cases.

    Neurological issues aside, if your B12 deficiency symptoms return before your eight weekly injection is due, and are then relieved after your injection, then this is a sure indicator that you need more frequent jabs. Though getting them, for many people in this situation, is not always an easy task.

    If the achy stiff muscles and painful joints are a 'new' thing, then it may be that something else is going on too.

    First, people with PA often also have or develop thyroid issues. Most GP's test only TSH but true thyroid status can only be assessed by testing TSH, FT3, FT4, and TPO and Tg (TPO and Tg are thyroid antibodies - raised in the presence of Hashimoto's thyroiditis (an autoimmune condition) and guidelines suggest at people with PA are autoimatically tested for this condition as often runs hand-in-hand with PA).

    About other autoimmune conditions. The place to start with this is to ask your GP to run an full autoantibody screen - these test cannot diagnose an underlying autoimmune condition but if raised, indicate that a referral to a rheumatologist is necessary for further investigations and testing.

    It would also be usual to test inflammatory markers (CRP and ESR) at the same time - these are non-specific markers of inflammatory disease and would also indicate that further investigations are required.

    Autoimmune disease are often very difficult to diagnose and it does take some time to get to the bottom of autoimmune issues - if you have them 🤔. Often, past medical history is of vital importance so if you decide to go down this route, it's best to write down every symptom, past medical condition, or treatment that you've ever had - even if years ago. Sometimes, things that don't appear connected are - and give clues that enable accurate diagnosis - or even diagnosis at all.

    In my case, I had thought that my B12 had stopped working, but I'd actually developed an underlying autoimmune condition. It took just over two years to get a diagnosis - and many of the clues were in relapsing and remitting symptoms and apparently unconnected 'things' that had happened over many years 😖😀.

    So...don't know if any of this helps. Certainly, if you have reoccurring or new symptoms, your GP should want to investigate and help you to get as well as possible.

    No idea how much you've been able to read about PA and B12 deficiency so here are some links to information that might help. Sorry it looks like a lot of links but most of them are only one page long… And they're all very interesting. The BSH guidelines or a little longer but do have a useful summary sections if you can't face the whole thing.

    Good luck. Hope you find some answers. Let us know how you get on. Here come the links…

    bnf.nice.org.uk/drug/hydrox...

    (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

    pernicious-anaemia-society.... (PAS Symptom Checklist)

    stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

    onlinelibrary.wiley.com/doi... (British Committee for Standards in Haematology (BCSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

    nhs.uk/Conditions/Anaemia-v... (NHS Choices. B12/Folate Deficiency - Small Section on Functional B12 Deficiency)

    cks.nice.org.uk/anaemia-b12... (NICE Guidelines Treatment of B12 / Folate Deficiencies)

    onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)

    stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

    stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

    stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

    stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

    stichtingb12tekort.nl/weten.... (B12 Deficiency and Intrinsic Factor – Can Be Negative and Still Have PA)

    stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

    bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)

    gov.uk/drug-safety-update/n... (Low B12 - Nitrous Oxide Contraindications)

    ncbi.nlm.nih.gov/books/NBK2... (Gastric Autoimmunity: Heliobactor Pylori)

    👍

  • Thank you for taking the time to reply to me, I will read through all your links and go back to my GP to try and and get further help on my symptoms.

  • Hi chloeg91. Hope the reading and further appointments with your GP go well.

    Post again for more advice if you have further problems.

    Sorry for the delay in responding...currently have eye problems and have been told to avoid computer screens for a couple of weeks 😖.

    Good luck.

  • Hi,

    Some B12 books I found useful.

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

    "Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    Has several case studies.

    "Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

    Very comprehensive book about B12 deficiency with lots of case studies.

    Link about writing to GPs about B12 Deficiency.

    Point 1 is about undertreatment of B12 deficiency with neuro symptoms.

    b12deficiency.info/b12-writ...

    PAS (Pernicious Anaemia Society)

    May be worth joining PAS. Costs about £20 a year. They can offer support and information. In some cases they can intervene on behalf of PAS members.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717 answerphone

    B12 blogs

    May be stories relevant to you on Martyn Hooper's blog about PA and B12 issues.

    martynhooper.com/

    There is also an interesting blog about B12 issues on "B12 deficiency Info" website.

    b12deficiency.info/

    I am not medically trained just someone who has struggled to get a diagnosis.

  • Thank you so much, really helpful

  • I'm waiting to see a dermatologist at the moment. I have a mystery skin condition, that nobody seems to be able to diagnose apart from saying it's autoimmune.

    I also have lots of other autoimmune type things: allergies, eczema, hay fever, asthma, type 2 diabetes. I've tested inconclusive to Sjrogrens - my biopsy showed inflammation, but not enough for a definite diagnosis.

    I'm sure there is something else going on because although i feel much better since I started B12 jabs, there's still something not right. Like you, I feel really achy, stiff jointed and tired. Maybe the dermatologist will have a light bulb moment and give me another autoimmune condition to add to my arsenal.

    My own sneaky guess is Lupus, although I did test negative for the antibody and I'm also too old for it, apparently.

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