Top 10 open questions

[Hockey_player]

In this article: Research priorities in pernicious anaemia: James Lind Alliance Priority Setting Partnership, Staley, Kristina ; Ahmadi, Kourosh R ; Carter, Karyl ; Cowan, Katherine ; Seage, Heidi ; Visser, Petra ; Ward, Nicola ; Hooper, Martyn BMJ open, 2022, Vol.12 (8), p.e065166-e065166

the goal was to identify the top 10 important research priorities. They wanted open questions that those with pernicious anemia and medical professionals thought most needed addressing. Copied from the article, the list of 10 are:

1. Can a more reliable and accurate test be developed to diagnose PA?

2. Does an individual’s need for B12 treatment change over time or with life circumstances? What factors might affect this day to day (e.g, stress and exercise) and over a lifespan (e.g, ageing, menopause)?

3. What are the safest and most effective ways to give B12 to people with PA, tablets, sprays or injections, or a combination? Can better ways be developed?

4. Why do some health professionals fail to take PA seriously? How can this be addressed beyond improving awareness and knowledge of PA?

5. If the frequency, dose and timing of B12 injections were tailored to the individual and their symptoms, would this improve the health of people with PA?

6. Why do people with PA need B12 injections at different time intervals?

7. Why do some people with PA still experience symptoms after treatment with B12?

8. If people with PA do not receive B12 treatment according to their needs, does this cause harm or irreversible damage?

9. What should be included in a long-term, comprehensive treatment and care plan for people with PA?

10. Is PA linked to other health conditions, in particular autoimmune conditions or digestive problems? Is there a common cause?

I really hope that this stimulates some new research that gives us answers to these questions.

[Jillymo]

You and me both.

Lets hope for better understanding of PA and life long treatment. 🤞 I could answer most of those questions, it really isn't rocket science. 🚀

[Hockey_player in reply to Jillymo]

It would be nice to have some population studies that show that some people need it more often than others. The standard in the UK is to settle down to shots every 3 months. I think some people need it more often, but encounter a lot of pushback from medical professionals when they try to get it more often.

[Jillymo in reply to Hockey_player]

It's the same old story of one cap does 'not' fit all.

Thankfully I did manage to persuade my Gp to give 2 monthly but this stil left me symtomatic ! These medical professionals need a damned good wake up call.

[Narwhal10]

Thanks Hockey_player,

Saved, I do not have time for the next week. One point though is the attitude of it is only a vitamin.

The medication or drug is called Hydroxycobalamin or Methylcobalamin so using exact and precise wording, I feel is really important.

I learnt this trick as a Civil Servant, we would have weeks of meetings to amend words on policies and documents prior to them being published. Government documents cannot be misinterpreted or misconstrued.

🐳

[Hockey_player in reply to Narwhal10]

I just copied the 10 questions they had in their paper exactly as they wrote them. The other drug is Cyanocobalamin. That is the only one that is easily available for me. I question how much I need to be concerned about the cyanide molecule with that form.

[WIZARD6787 in reply to Narwhal10]

I agree that accurate use of language is important and is always influential. An educator makes more money than a teacher.

When I read B12D I myopically really think in terms of my B12D. I really did not internalize until recently that some people here write from a totally different perspective. Self treating when 1 mg three times a month has any effect is only related in that we both share B12D etc and vice versa.

I have recently thought in terms of self treating for the damage caused by my having been B12 deficient and my under self treating for 3 years. I find this more accurate term and creates a focus on what I am accomplishing and trying to accomplish.

Symptoms of B12D are categorized by the domain of the specialist rather than what is going on with the body. I find it helpful to think of all symptoms as neurological and that I am self treating my neurological system.

I would find it helpful to have the severity of symptoms to be categorized to allow for more robust treatment. I personally have issues with that as everyone's symptoms are important and meaningful. Fact is some of us are different because due to severity of symptoms for whatever the cause due to more damage and need a different self treatment.

Note: It takes time and some will never heal is not a reason to treat successfully which means efficiently.

[dolphin66stag]

Amen sister. one size doesnt fit all. All quesrions ypu have highlighted are relevant to peeps on here and should be addressed by all professionals invoved in p.a

[Rexz]

Just a note regarding this survey. Upon review it is a good list. However the survey was restricted to only those PAS members in the UK. When I attempted to take the survey I, being from the US, was not permitted to provide my input. The message I received was something like for UK members only.

It was somewhat disappointing to me as PAS purports to be an international organization.

Not whining but that report should at least state that fact that the survey was restricted.

Best wishes, Rexz

[Hockey_player in reply to Rexz]

The report states that the survey was restricted to people in the UK. I did not provide a link to the survey because I had to login to my university to get access to it.

[WiscGuy]

I think it is problematic to call a disorder "anemia" when at least 40 percent of people with the disorder do not have anemia. I am sorry to see the list does not include a question like "What is an appropriate name for B12 deficiency (rather than anemia) that will not confuse medical professionals at the outset?" Eg, coexisting names, "B12 anemia disorder ", and "B12 nerve demyelination disorder ".

[Narwhal10 in reply to WiscGuy]

WiscGuy,

There are over 200 anaemia. I will always write Iron Deficiency Anaemia because of ALL the others.

[Cherylclaire Forum Support]

This survey was open to those with B12 deficiency, not restricted to those with a PA diagnosis (as in previous surveys). This makes far more sense:

A lot of patients, when B12 deficiency is found, are told that there is no point in testing for PA as the treatment will be the same in any case. So they remain undiagnosed.

A lot of GPs do not seem to realise that the IFab test will only give a positive result in 40-60% of those who do have PA, and will base their decision on a single negative result. This rules out a later diagnosis for these patients too.

A lot of patients wait many years for any diagnosis - in a 2014 survey of those with PA, 14% of respondents had to wait over 10 years for a diagnosis. Almost 900 responses were used.

Rexz : For the 2014 survey, a decision was made to use only those responses from the UK because different countries have different treatment regimes. Some of the data would have been meaningless. This may also be the case with this more recent survey.

I was glad to have had an opportunity to contribute to the survey discussed in the post, but as someone who hasn't got a PA diagnosis, would also have liked less emphasis on PA in the questions posed. Yes, certainly a reliable PA test is desperately needed, but do GPs take B12 deficiency any more seriously, prior to any diagnosis, than pernicious anaemia - and isn't that the problem at the heart of all of this ?

In the NICE draft report, there appears more emphasis on the division being of those with non-dietary/dietary B12 deficiency. A welcome change.

[Hockey_player in reply to Cherylclaire]

The initial steps getting input to get a large selection of questions reached a lot of people. But when they chose the final group of patients to narrow the final list down to 10, the 12 people selected all had a confirmed PA diagnosis. They also included 12 clinicians at the final step. Their goal was to identify a top 10 list of questions related to pernicious anemia. So it makes sense to emphasize PA in the questions since this was what the whole thing was about. I totally agree with your concerns about patients who have PA not getting a diagnosis or not getting one soon enough. The delays to treatment can cause permanent neurological damage. One problem is the very high false negative rate of the test, and a lack of understanding from physicians that a negative test result does not mean that people do not have pernicious anemia. For researchers who do biochemical work, it would be really, really nice to get a test that is more accurate.

Yes- this work was restricted to people from the UK: they state, "Responses from people outside of the UK were removed on the basis that respondents from other countries are unlikely to have experiences relevant to UK research and service development."

[WiscGuy]

Website of the James Lind Alliance. Various pages describe the alliance and it's purpose and how it works. Medical disorders that have been addressed are listed, including pernicious anemia.

jla.nihr.ac.uk/

[PAScomms]

Thanks Hockey_player. There's a lot of useful discussion in the replies but maybe it would be helpful if I also point out a couple of things from the perspective of the Society

we commission and funded this research, we were also instrumental in getting the NICE guidelines committee set up, the top 10 research questions (from patients) identified by the James Lind Alliance priority setting partnership are things we are working on. Research has to be ethical, statistically relevant and funded - it takes a lot of time and money! Unlike other social media groups and webpages on B12 generally, the PAS actively does research and works closely with Universities and researchers globally. Donations via our website selecting the "PHD and other research" go directly to funding current and new research about the JLA findings and other related matters. A regular standing order donation is really appreciated because it means we can plan to fund long term projects.

If you are a member you will be invited to join our surveys for research. There were three surveys in our December newsletter all starting to answer these questions. We have a great response rate generally from members but you can join our Society whether or not you have a formal diagnosis of PA and respond. Of course not all answers or people will be relevant to every survey but all contributions are appreciated and often raise further questions for us to explore. Sometimes we have to limit research by country and sometimes by diagnosis. This is not meant to say that any one view or diagnosis is less important, it is simply dependant on the framework of the research, the terms on which funding has been granted and the fundamental purpose of the research.

Although we all live the experience of what having a B12 deficiency feels like and think we can answer these type of questions easily - things only really change when we have scientific and statistically relevant credible research which is published in reputable journals. Even publishing papers costs money!

[Cherylclaire Forum Support in reply to PAScomms]

My one concern is that a concrete, indisputable PA diagnosis is getting to be a rarity !

This may be addressed in the future if an accurate testing method is discovered - but only if it is accessible and affordable. And still then only if B12 deficiency is considered to be sufficiently serious a condition to warrant that effort and expense.

My fingers remain crossed for all those currently trying to live without diagnoses.

[Hockey_player in reply to Cherylclaire]

I don't have an official diagnosis because I went from sleeping 16 hours per day and having all sorts of symptoms to an energizer bunny immediately after high doses of B12. I was already eating eggs every day because they seemed to help a little bit, so it was not a dietary insufficiency. It does not worry me to not have an official diagnosis. My doctor believes I have it. It's nice to live in BC, Canada where I do not need a prescription for injectable B12.

[Cherylclaire Forum Support in reply to Hockey_player]

If your doctor believes you have it, it means you are treated as if you do. In the UK, this would hardly ever happen.

Mostly you'd need your GP to get an IFab test requested - and then get a positive result first time. Then get a printout. Then frame it. [Just in case you move, your GP retires, a nurse disputes it or it gets lost off the system.]

My bounceback from sleeping for 16 hrs was very slow - and took an awful lot of frequent B12 injections. I have accepted that I have to do this to prevent a return -but wish that this was also accepted by far more medical professionals.

I will always be grateful to those in the medical profession who go against the flow and are aware that this is the case for some of us - whether by individual patient observation or by doubting themselves enough to consult an expert or read the research. I've been fortunate enough to meet both.

[Hockey_player in reply to Cherylclaire]

Yes- I can tell that the doctors need a lot more education. There are so many people who are forced to take things into their own hands because they are not getting adequate treatment from their doctors. I am just VERY lucky to have the doctor that I have.

[Cherylclaire Forum Support in reply to Hockey_player]

Glad to hear it, Hockey_player !

Sleepybunny has posted a short video in which a doctor says that 4/10 of those with B12 deficiency self inject. I was surprised not higher than that.

How on Earth do people manage on an injection every 2 or 3 months ?

[Hockey_player in reply to Cherylclaire]

I don't know how people manage. We all seem to be different so some people may be OK with that. I suspect that is not often enough for most people with PA. I am very grateful to my husband for giving me my injections. I seem to need them every 2 weeks or so, but am trying every other day for a bit to see if it helps some issues I had with my feet. It is a 30 minute drive to my doctor, so it saves me tons of time.

[Cherylclaire Forum Support in reply to Hockey_player]

Wishing you luck.

[Hockey_player in reply to Cherylclaire]

Thanks! You too! But I'm not the one who really needs the luck! My heart really goes out to all the people who are not diagnosed before they are in a really bad state and who are undertreated.

[Cherylclaire Forum Support in reply to Hockey_player]

True.

[JesusMercy60 in reply to Hockey_player]

Hello Hockey player,

I was reading your post's and am amazed at your recovery and your survey questions yes I wish their was answers to the questions, I was wondering what kind of symptoms did you have before your treatment, did you have nerve pain and anxiety besides the fatigue.

and how soon did they start to go away with your treatment.

thank you,

Rosina

[Hockey_player in reply to JesusMercy60]

Initially, my most annoying symptom was diarrhea to the point where it was sometimes worrisome going out in public. Then crushing fatigue until I was sleeping about 16 hours per day. I also had nerve tingles in my fingers and toes. When I was first diagnosed, 1000 mcg sublingual worked for me. I felt better immediately. Many years later when I had tingling and sore toes, my doctor said I needed injections. It took a few weeks that time for my toes to feel better. I did not have anxiety but with the amount I was sleeping, it was really hard to do my job (professor).

[JesusMercy60 in reply to Hockey_player]

Oh so nice to know that you are doing so amazing now. It give hope so I need to read stories like yours, I was just diagnosed with PA a month ago and have been doing EOD injections for two months. but I had symptoms the last 6 to 7 years and Drs didn't know what was wrong with me. I too had super bad stomach with diarrehea I was told I had gastritis and my stomach is healing better now. I lost so much muscle and weight I was always and athlete and had lots of jobs in nursing home and hospice where I moved people around alot but now I have no muscle left. I'm 60 and soon to be 61 years old but am healing now that I'm on injections.