Pernicious anaemia

[Fishey]

Hi I've just been diagnosed with pernicious anaemia after a blood test, I'm afraid I know little about it. Dr said I needed injections of. B12 so I suggested I might try sublingual drops but I don't know if it will work. I noticed recently I am short of breath at times and slightly disyish with some discomfort mid stomach occasionally. I am not sure how long I have these symptoms but it is a year or more. Bloods were only taken after I asked following an Endascope and ultrasound, for upper stomach pain which has since calmed a lot. Sorry for going on but I'm unused to posting and unsure what I'm supposed to say, thanks for being there.

[wedgewood]

The majority of people with PA are only helped with injections of B12 . That was also the case for me . I did try patches , sub-lingual lozenges and nasal sprays to no avail. Injection is considered to be the most effective method , and is what GPs use , administered into the muscle . As I have to self- inject because my GP will only give me one injection every 3 months (standard procedure ) because my symptoms return after about 1 week . I know this to be an effective measure , also pain free . I inject into my thigh . So I suggest that you take injections . You will first have loading doses , then 3 monthly which is usually enough . You will get injections into the upper arm . Best wishes to you .

[Fishey in reply to wedgewood]

Many thanks for your reply, I will talk to my Doc and ask for the injections. I'm really new to this and I am looking up information on the web as I got very little information from my Doctor. Again thank you for your input and your time, I hope all is well with you.

[fbirder in reply to Fishey]

The best place to get info on the web is from the Pernicious Anaemia Society web site.

Off the web the best place is the book - What you need to know about Pernicious Anaemia and Vit B12 deficiency - by Martyn Hooper. I gave a copy to my GP, who read it and passed it around the rest of the practice.

[Fishey in reply to fbirder]

Thank you fbirder I will check this out.

[wedgewood in reply to Fishey]

Bear in mind that it's possible that patches , sprays or sub - lingual lozenges might help you. We PA people are are all different !! But injections are best to start off with , definitely .

I was also plagued with tummy aches and bloating at the same time . A gastroenterologist told me that PA patients have low or no stomach acid ( needed to help in absorption of B12)!This Hypochlorhydria or Achlorhydria causes tummy problems as the stomach flora is upset by lack of acid . I used a water- based probiotic to help this, called Symprove . Unfortunately expensive . But it was marvellous for my stomach . After a few months I turned to organic raw sauerkraut ( I make my own now) recipe on Internet . I have read that this is the best probiotic . . Has other nutrients as well . I use red cabbage with some chopped red onion . Should not be cooked but eaten raw -a small portion daily . It grows on you !! It's ready in about 10 days ( depends how sour you like it . ) Will then keep in fridge for months . Uy

Best wishes to you!

[Fishey in reply to wedgewood]

Thank you wedgewood the doc has put me on nexium as I have a problem called shatski ring a narrowing of the esophagus which he said is causing the stomach problem. I'll give it the month and see if the bloods which he is taking then show any improvement. Take care and best wishes.

[wedgewood]

Forgot to say that the stomach problems are probably because you have PA , and my gastroenterologist told me that PA patients have low or no stomach acid , which upsets the flora , Take a good probiotic and eat probiotic foods e. g . Organic raw sauerkraut . That's what helped me .

[Whf707 in reply to wedgewood]

I have pa and had stomach issues. I was advised to take a prebiotic daily as it is more effective than a probiotic I use Bimuno.

[PAS-admin Partner]

Have you been diagnosed with a B12 deficiency or PA itself? In any case, injections usually work better and in a lot of cases (with neurological symptoms) they are essential. So try at least the loading dose and go from there. If your symptoms are only the ones you describe, you could try sublinguals after if you prefer that to injections or next to the maintenance dose of injections.

[Fishey in reply to PAS-admin]

Many thanks for your reply., I'm going for another blood test at the end of Sept and I will request the injections then. It is pernicious anaemia and explains a lot disyness laboured breathing etc but strangely my Blood pressure is high. I see on some information where BP gets low ? Thanks again for your time and your input.

[clivealive Forum Support]

Hi Fishey I'm not medically qualified but have had P.A. for 45 years and at the start I was offered a diet of raw liver three times a day or injections of B12. Fortunately my then G.P. had a sense of humour and I took the option of having the injections and would suggest you take your doctor's advice and offer too.

I wish you well

[Fishey in reply to clivealive]

Many thanks Clivealive I am going to speak to the Doc at the end of the month and ask for the injections. He is taking follow up blood blood samples then so I will see how the sublingual drops are working. Thank you for your reply and I hope you are well.

[Gambit62 Administrator]

Hope you have managed to work through the pinned posts and and managed to learn a bit more.

The CDC (centre for disease control) in the US used to have a mini-site for B12 but it disappeared a while ago - anyway they actually recommended the use of nasal sprays if injections were a problem - its another option to consider if you really can't tolerate injections. People vary quite a lot in which forms of B12 they respond best to and which delivery methods work and don't work - not something that is covered by tests or guidelines generally. All you can really do is try and see.

[Pigletmarie65]

No, sublingual drops will not give you what you need. The only way to give you what you require is the B12 injections IM. You may not like needles but remember if you are not getting what you need, nerve and spinal cord damage are continuing to progress. The injections are the fastest most efficient way to get this condition under control. You must take these injections for the rest of your life. I inject religiously, I want to live!