I really believe that if Pernicious Anaemia could be treated with a patentable pharmaceutical drug , we would have no difficulties in getting treatment . The dosage would be adjusted to needs, as with other illnesses . We would not be subjected to the distress that so many P..A. patients have to endure . I am convinced of this . I run the risk of huge criticism by writing this , I know . But I don’t care .
Pernicious Anaemia treatment . - Pernicious Anaemi...
Pernicious Anaemia treatment .
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wedgewood
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Totally agree. I feel there would also have been more research carried out so that there would be less unknowns about the illness.
No you are right as huge amounts of money is then involved
I've said similar . Same goes for research as no big drug company financing it
As it is though it shouldnt have the restrictions of a patented drug
So it's in no mans land !!.
You also "run the risk" of huge applause for such sound thinking!
I think it is sad that any of us should be wary of criticism; understandably brought on by receiving so much in the course of this illness.
Excellent point!
I don’t think anybody would criticise you wedgewood it’s a very valid point you make so it’s a big yes from me but sadly as usual it’s all about the money isn’t it.
I’ve recently given gp copies of my private blood test results confirming p.a after I.F test ,they’ve put it on my records but made no attempt to contact me to discuss.
Contrary to what other people think there are no merits to being confirmed with p.a we are treated just as shabbily as we were when we were diagnosed b12 deficient. Take care your opinions are just as important as anyone else’s x
Nessy50• in reply to
That’s ridiculous they’ve not contacted you or done the tests hope you get on injections soon. I had to find it for myself my level was ignored at 197 & got lot worse.
• in reply toNessy50
Sorry Nessy50 I just assume everyone knows my history.i dd get diagnosed with functional b12 deficiency by another endo after I had private bloods done and my new gp did do the loading doses as requested then it was to be 3 monthly.I decided to self inject as symptoms too bad to wait that long.I then did I.F test privately,had to come off shots for two weeks to do that,and it came back positive for p.a I gave my new consultant a Copy report and my gp a copy but gp has made no contact and I’m seeing consultant on Thursday for sst testing again private.
Thank you xx
Nessy50• in reply to
No sorry didn’t know you were already on jabs that’s good you self inject. Good luck with the sst on Thursday I’ve had 3 & although in range I don’t feel my starting cortisol is great.
• in reply toNessy50
Have you Nessy50? I’m so scared getting myself so worked up about this Sst test on Thursday and I ended up in tears earlier,the prof phoned and said are you on your way and I said no I’m not due till Thursday and he had gotten days mixed up and now can’t be there so that really upset me today I was hoping to discuss the new stone found in my kidney with him,I’m hoping I don’t need adrenal treatment we seem to have so much going on at once don’t we.
Was the sst truly awful or did you manage it ok sorry to ask but I’m such a chicken.
Nessy50• in reply to
Awww that’s a shame you gear yourself up for things & then they don’t happen. My first one I felt a bit sick but then was hyper after but the other two I was exhausted after & in bed but not everyone has a reaction, you might feel a bit flushed too. It’s best to have it done early morning 8-9 if you can but one of mine was too late in the day. The worst part for me was them finding a vein think that was only the last time but my veins aren’t always the best. I’m sure you’ll be ok & hope you don’t have to wait too long for another appointment. X
• in reply toNessy50
Thank you Nessy50.stay well xx
In early 2016, my level was 196 ng/L (range: 197 - 771 ng/L): I was treated for B12 deficiency, because I was just 1 ng/L below range.
I still got a lot worse, like you, and was then tested for MMA which was raised - with no renal problems, I was then diagnosed with functional B12 deficiency by my GP and this was confirmed by the laboratory. My GP then ensured that I had 2 injections a week, which treatment continued for 6 months when unfortunately, I got worse again. She then decided that it had gone beyond primary care - and sent me to many, many consultants. Now exhausted.
Unlike Hidden , my IFab test and parietal cell antibody test were both negative.
PA/ no PA diagnosis yet/ maybe PA/ B12 deficiency/ functional B12 deficiency: it's no picnic this, is it ?
wedgewood - spot on. But including all of the above !
You can still have P.A. with anti body negative for intrinsic not everyone is positive. Are you coeliac? You’re right it’s no picnic. I think my hormones are all over the place sweating a lot at times. X
I was 197 & ignored for few years so similar I had to find out myself. Even the haematologist I saw didn’t have a clue I’d already start my own by then. I’ve asked a few times for parietal cells but never done I’ve stopped asking but might bring it up again although main things is to treat yourself when you need to. I only get every 8 weeks from Dr but I do that myself saves going in & their time plus not as painful in thigh. X
I've had so many tests over the last 5 years now that I think I'm done trying to find reasons/ answers now. Only seeing Oral Medicine consultant now - for angular cheilitis and burning tongue.
Quite happy to go with GPs initial diagnosis of functional B12 deficiency for which treatment (for me) appears to be frequent B12 injections, which I now do myself. This keeps me from getting worse and I have got better than I was -very, very gradually. Probably plateaued now, but could perhaps squeeze some improvement to quality of life by making lifestyle alterations and listening to body more regarding needs/ limits (?) More interested in getting a life now than getting a name for it !
No, Coeliac disease ruled out.
You may well be right. Although it doesn't reliably follow through with thyroid treatment, so even that might not be enough. We need more real and thorough understanding of the condition and implications. Maybe, one day....I think we are all wary (and weary!) and get progressively more so. Best wishes to you
You are totally correct. But such a drug is extremely unlikely. Even if you could throw a billion quid at the problem I doubt that it would be possible.
Drugs tend to work by interacting with various receptors in the body. Some drugs switch on the receptor, some inhibit the receptor. So a simple drug would mean finding the receptor that causes PA. If there is one.
I'm certain that there will be a cure (not a symptom relieving drug) sometime in the future. It will involve finding the gene(s) responsible for PA (and we can be sure there's some genetic involvement) and editing them so that they work properly.
There is a already a technique that can do this called CRISPR. But first somebody would have to identify those genes. And CRISPR would need a lot more development.
But I'm pretty sure it will happen. Just not for another five to ten years.
I hope you are right - do you really feel this is possible in 5-10 years? Makes me feel hopeful for my 18 year old daughter 🤞🏻
I had no idea that it was even a possibility , so I’m overjoyed for following generations of P.A. patients that it is so. I was suddenly overwhelmed this morning , by the fact that P.A. treatment is so poor , because it’s not treated with a pharmaceutical drug , but a simple old vitamin .Thank you for your input ,which has cheered me up no end , because I have 5 grandchildren , and it’s great to think that they will have better treatment than the present generation , if they should be so unfortunate and inherit the P.A. gene ,which is as yet unidentified . 👍🍀 Thanks !
Yes, CRISPR holds great promise for loads and loads of maladies.
This article from New Scientist starts off with - "CRISPR is a technology that can be used to edit genes and, as such, will likely change the world."
Read more: newscientist.com/term/what-...
Your great grandchildren will probably have the genes tested, naughty ones detected and repaired, as standard.
That is not true. There is something called Malacards and there are three or more genes associated with Pernicious Anemia and I think many more that are of associated with functional B 12 deficiency. I’ve been wishing to get to an expert.
Malacards lists genes associated with PA, not genes that cause PA. For example, they list the gene GAST, which encodes for the enzyme that makes gastrin. And that has something to do with PA, in a roundabout way - PA is caused by Autoimmune Gastric Atrophy, which causes achlorhydria, which causes hypergastrinaemia.
Malacard lists zero 'elite' genes for PA. Elite genes are those likely to be associated with causing the disease.
Nobody knows what genes cause PA.
There can be NO just or sound reason to disagree with you... We really are in this thing together & as such > all opinions count until totally proven otherwise! I don’t know what I’d have done without the kind help on here & the thyroid threads Much love Wedgewood xx
I totally agree. Doctors are quick to pull out their prescription pads (without discussing side effects or other drug interactions) but any treatment that requires a few minutes of thought is inconvenient.
Same. In fact the rare disease group in my government suggested I start a non profit to look for a DRUG cure.
Wedgewood, you are without a doubt........110% CORRECT and that is why this will be a struggle for generations to come. Could you imagine what would happen if a VITAMIN could fix a health issue? There is no money in actually healing a large population of the globe with a vitamin. That would also mean putting patients health ahead of their own greed. It won’t happen. The best I think we can hope for is to get through to some physicians so that they will listen and educate themselves on it. I would be happy if they would all at least listen.
Yes , Plucky11966 , absolutely right . If Pernicious Anaemia / B12 deficiency were treated correctly , what would happen to Big Pharma ? No end of patients get extremely unwell when either undertreated or not treated at all , and are prescribed all sorts os of Pharmeceutical drugs as a result . Whose interests would it serve If P.A. patients were treated correctly , according to their needs? Only the patients’ . ...........
Exactly! Never be afraid of catching flack for sharing the truth. If only everyone could wake up to see what’s really going on. Stay well
Oh, come on! I've had to say this a million times already.
'BIG PHARMA' DO NOT MAKE ANY MONEY AT ALL FROM TREATING PA.
Your injections are not made by 'big scary pharma'. They are made by 'little, just about scraping by pharma. There is virtually no profit at all to be made in selling B12 jabs.
Not do 'big bad pharma' make any money from the 'pharmaceutical drugs' that some doctors prescribe. Again, they are nearly all generic drugs, made my tiny little companies.
Take the favourite targets - antidepressants.
Paroxetine tablets cost just over 4p each. Citalopram costs 3p per tablet.
It costs the NHS £2 a month to treat somebody with citalopram. And somehow the company that makes the tablets is supposed to be able to make a profit, plus pay every single doctor in the country a big bribe to prescribe it instead of a B12 injection. And all of those doctors are so pleased with the massiveness of their bribes that they keep quiet about it. All of them..
C'mon, as conspiracy theories go, it's pretty feeble.
Doctors misdiagnose and undertreat PA because they won't challenge their training. They are trained that blood tests tell them all they need to know, so if your blood test is normal, then so are you. Doctors are told that the BNF tells them what they can do for treatment, so if the BNF says no more often than every 8 weeks then they don't prescribe more often than every 8 weeks.
Remember Hanlon's Razor - "Never attribute to malice that which is adequately explained by stupidity".
Absolutely right!! I look at my step son and all the treatment he gets for diabetes. I understand that my condition isn’t a life threatening in that sense, but the 6 years I suffered before trying B12 I completely lost my quality of life. Imagine if we could just check our levels ourselves and dose accordingly! Would be amazing!
Yes, but I suppose I meant not as instantly life threatening as a day without insulin. But I agree with your post completely!
You could be right Wedgewood, but the cynic in me hopes it isn’t an American outfit which patents it as they would price most of us out of the market. As we are now the treatment does deal with it and for most, like my daughter, she only needs a 3 monthly injection to be a bundle of energy. Even if we were to need to inject every day the cost, under a sensible drug policy, would be less than £400 a year. That will always be balanced against the likely cost of a specifically targeted genetic solution. If a better solution does arise it will be as a result of it being a chance side effect of a treatment for some much more fashionable disorder attracting the necessary research funding.
fbirder• in reply to
Any company that discovered a drug that cured PA would have a patent on it. To develop that drug it will have cost the company around $2.6 billion. Are they expected to give it away for nothing?
• in reply tofbirder
Certainly not, but the American business model, especially when it comes to medicines will be to charge whatever they think the market will bear. Their current charges for Insulin are a case in point. Seeing as how there is a treatment which is so inexpensive the likelihood of anyone, American or otherwise, investing in something else is very, very small. If one does come it will be as a result of pure chance out of research for something else - like Cialis was. Unfortunately Pernicious Anemia isn't sexy.
fbirder• in reply to
Oh yes. The American model of health 'care' is abysmal. But far too many Yanks believe the rubbish they hear about healthcare in places like the UK.
Here's a great example of American right-wing thinking about the NHS -
breitbart.com/europe/2018/0...
"So long as the NHS exists, Britain will remain stuck in the dark, post-war Austerity-era mentality of rationing, jobsworthery, and the lowest common denominator. And stuck there by design.
That’s because it was created by Communist fellow-travellers (with half an eye on the shining example offered by Stalin’s Soviet Union) for the promulgation and entrenchment of socialistic values."
• in reply tofbirder
Aghh, but that is Breitbart and like their readers they can’t even spell bright properly.
There isn’t much hope for them over there. There are only another 300 million or so to go before the whole nation is suffering post covid symptoms. They also think you need a gun to protect yourself from everyone else with a gun.
There are many Americans who think that we would be so much better off with a health system like the NHS.
Our current health system here in the US is broken!
I totally agree with you. It would be preferable to invasive and often painful injections. A nurse once hit a nerve in my arm. I couldn't move or use the arm for 3 weeks. When I went to a GP to ask what was wrong with my arm he said the nurse had caught a nerve. He said 'It happens sometimes. ' No apology. Probably because the nurse was married to a Consultant.
No dollcat, in the medical world they do not comment on others or mistakes. Ive had 14 ops, with the 1st 5 used as experience, with an amputation, but obviously unknown to me at the time. Swore it would not happen again, and I have saved 2 fingers to date, 1 last year. This was in spite of the rules forbidding the practice in 2017, but it still goes on, but not on me.
That's awful ! Bless you 😞 Yes the medical profession cover up for each other. They bury their mistakes. If anyone dares to speak up they are branded with the whistleblower iron.
Agree. True and sad indictment of greed from pharmaceuticals
One possible such drug would be something that destroyed or suppressed the antibodies we make to Intrinsic Factor. With that restored, a large number of PA sufferers should no longer need injections, although still not those with lower bowel issues preventing absorption.
I don’t know who would think to criticise you for such a suggestion, though.
But, alas, I don’t think you are right 😢
PA seems to be a really weird thing for the medical profession. Once diagnosed, it’s straightforward to treat, the treatment and its application is well understood (at least by those who write the guidelines), and yet doctors seem enormously reluctant to apply them.
Is it resources? No, our previous practice proudly states on its website that it has three nurses trained to administer B12 injections; but still, post-loading, we couldn’t get them.
Is it because it’s injections, either the fact of injections or the inability of Big Pharma to get in on the act with a drug instead? Unlikely, as doctors have no trouble treating type 1 diabetes.
Is it because it’s IM, not SC, as I have seen suggested? Easily solved, surely, by the use of the same injection pens used for diabetes, keeping it all SC, letting us use them as diabetes patients can, and taking the load off those three nurses, if they ever do give injections post-loading. As I haven’t seen anyone say that only IM works for them, not SC. (Though I expect this is a thing).
There’s something weird about how the medical profession regards PA, and treats, or fails to treat, PA. I think until we know what the weirdness is, and why, we won’t get any progress, dreams of a new wonder drug or no.
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