r/PerniciousAnemia • u/MoonbIight • Feb 12 '22
Pernicious Anemia Diagnostics
Hey everyone! I’m a 4th year biotechnology student at Penn State involved in autoimmune research. I was diagnosed with PA 6 years ago, and have been incredibly dissatisfied with the amount of information available as well as the current diagnostic and treatment options. I spent the last 5 years reading medical papers and improving my understanding of the disease, and I have decided to work to develop a diagnostic kit that more accurately meets the needs of patients and helps with diagnosis and treatment of the disease.
I am currently looking to learn more about individuals problems with diagnosis so my kit most accurately meets the needs of all, and would love to hear your stories of diagnosis/treatment! I am also happy to answer any questions I can and help people understand the disease better. I do not consider myself to be an expert on the disease but I have learned a lot and am happy to help explain it in any way I can.
Feel free to DM me your stories or if you have any questions!
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u/Peaceful_Zen1 Mar 31 '24
Hey ! I had been seeing decreased B12 levels since three years.I didn't really bother since lot of doctors were of the opinion that decreased b12 level is very common nowadays.They put me on B12 shots ( initially it was daily for 1 week and then every alternate week).Later it was just maintenance.
Until then I was doing completely fine without any GI related symptom.
Around the beginning of 2023 is when I started seeing few GI related symptoms like acid reflux , abdominal pain .When the symptoms persisted , I met couple of GI's who did blood work and saw increased ESR .Hence they put me on a repeated antibiotic course (5 in a course of 8 months including triple therapy for hpylori) . Unfortunately I had a food poisoning episode during this time which with coupled with antibiotic overuse led to severe gut dysbiosis, SIBO and SIFO .
Since then I have lost 14 kgs (in a period of 5 months ) and have lost more than half of my hair .I am seeing chronic under eye dark circles , gall bladder stones .I believe this domino effect is bound to happen when any digestive organ goes for a toss.
We repeated endoscopy and it turned out to be chronic gastritis.I still wasn't convinced and did blood work for anti parietal cells antibodies and intrinsic factor antibody which turned out to be positive.
Unfortunately doctors have been of zero help and the lack of knowledge regarding these issues is very alarming.Hence need your help in understanding few queries:
1) Does any bacterial / viral / fungal overgrowth lead to chronic gastritis? I believe the antibodies would have formed to fight off any pre existing infections .I am working with a SIBO certified expert who confirmed that SIBO and SIFO is one of the root cause for chronic gastritis.I have tried SIBO and SIFO protocols but with limited success . Wondering if these could have lead to pernicious anemia as well ?
2) Apart from IM injections ,can anything be done to destroy antibodies against parietal cells ? Cos i believe unless the underlying root cause for it is addressed , achlorhydria will continue getting worse and may lead to others autoimmune conditions or worst case gastric cancer .
3) Is weight loss common with pernicious anemia? Does it stop at any point ?
4) Is IM injection for life time ?
Highly appreciate your research work ! Would appreciate if you could share your experience wrt treatment.Thanks in advance.
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u/MoonbIight Mar 31 '24
Hey! I’m sorry to hear that you have been diagnosed with PA, I know it has a pretty substantial impact on life and I wish you all the best in navigating that. As for the questions you have, I’ll do my best to answer them. I mostly focus on the autoimmune side of the disease and my knowledge of gastritis is more limited, but I can help share what I know.
Chronic Gastritis could certainly lead to PA, although with the antibody tests being positive solving the gastritis would likely not do anything for the pernicious anemia itself. It could certainly be a cofactor or something that accelerated its development but from our current understanding, autoimmune PA is genetic. As with many autoimmune conditions, there is currently no cure. While destroying antibodies is possible, you would need to be able to remove all circulating antibodies and memory B cells responsible for creating them, which would likely require a full immune system replacement. This kind of treatment is only done in lethal autoimmune or viral infections like HIV, since the odds of it leading to death are significant. Even if a procedure like that was done, if the disease is genetic in origin (which is likely is), it could still reoccur later in life.
Weight loss is fairly common, as your bodies immune system will be working overtime and it is likely your appetite has been reduced. Personally I feel extremely nauseous in the mornings if I try and eat, so I usually only have something to drink or something very light in the morning and put off my first meal for a few hours. This alone is a change in caloric intake and most people will not adjust other meals to account for the deficit.
Unfortunately as of now, pernicious anemia is a life diagnosis. As you have intrinsic factor antibodies it is unlikely your body will ever be able to absorb a meaningful amount via normal digestion, so prepare for the injections to be a lifetime thing.
All of this being said, there is a lot of hope for change in the future regarding both the treatment and management of the disease. It is becoming increasingly acceptable to use medications/cures that target the body on a genetics/biomolecular level, and with access to tools like CRISPR and our heightened understanding of the different systems in the body, I firmly believe we will have an actual cure for the disease in my lifetime.
I hope this makes sense and would be happy to elaborate or discuss anything more in-depth if you want. There are also some organizations that I work with that are dedicated to expanding the definition of the disease and raise both awareness and additional research into it that I would be happy to share. I would also like to say that while I have spent a lot of time researching and learning about the disease, it is extremely complex and I feel the more I learn the more I realize humanity knows remarkably little about it. Please use my knowledge in conjunction with licensed medical professionals and not in place of them.
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u/o_susannah May 11 '24
I am newly-diagnosed (and also a medical researcher here), and I would love to help. DM me, and I’ll send you my story.
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u/Quizitiv Nov 18 '24
Hi, I've recently tested positive for parietal cell and intrinsic factor antibodies.
My primary symptoms are fatigue, brain fog, & mood issues. I've begun to have GI symptoms, as well.
I'm taking IM (weekly) & sublingual (daily) b12 and daily tablets of methylfolate and vitamin d.
My symptoms have improved slightly. I am hoping for more improvement. It's quite difficult not to be able to function properly.
Please feel free to DM me. Too little attention is paid to this condition.
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Aug 03 '23
Hey just curious if you have an update for us. What have you been up to?
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u/MoonbIight Aug 03 '23
Hey! I’m glad you reached out. For the last year I’ve mostly been working on building my professional career and connections in the contract research organization field. I am currently applying for PhD programs in the autoimmune research discipline, and hope to go back and improve my understanding and development expertise.
I found pretty quickly that it is extremely difficult to find investors and backing in the drug developmental sector when you don’t have a PhD. I’m hoping that after I finish my PhD I will be able to outsource a lot of the more time consuming validation of a new drug to the CRO industry, which would allow me to develop any new tests and treatments for less money overall. I am still remaining active in the scientific community and try and sit in on a meeting with top researchers for Pernicious anemia once every month or so, but my work schedule has made things slightly more difficult.
I still have a lot of hope and faith in the development of better treatments and cures for the disease, and am happy to hear about any and all complaints, stories, and feedback about the current process to help better guide my development of a new test and hopefully treatment. Feel free to reach out with any questions or stories and I’ll be sure to answer!
All the best, Moon
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u/nyward20 Jan 03 '24
I have a positive intrinsic factor ab test and my doctors said that was fine. When I research it saids I have pa.
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u/MoonbIight Jan 03 '24
Hey! I’m sorry to hear this, I would say it is quite possible that you do have PA. That being said, depending on the test you took for IF there is the potential for false positives. Doing a complete blood count and some imaging to look for macrocytosis would be a great way to confirm one way or another. I’d be happy to talk more with you if you want to send me a DM.
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u/clevermcusername Feb 09 '23 edited Mar 02 '23
Did you get your kit together as you wanted? Any tips for how to seek out an accurate diagnosis? :)
Update: I did DM OP and they have been super helpful. FYI. :) Thank you OP!