I live in Australia, I was diagnosed with PA in late 2019 and I've never received loading doses.
For the first half of this year I was getting monthly injections from my GP (I'm not 'allowed' any more than that) but each one would make me feel worse (acne, heart palpitations, rashes etc.).
I stopped these monthly shots and saw a private GP. He said my B12 is 'fine' and that I just need tablets.
I've taken tablets for a month now and my worst symptoms are brain fog, memory loss and RLS.
I'm seeing the private GP next week but I'm worried I'll get the same response that my B12 is 'fine' and there's no point in even trying more injections.
Do you have any advice?
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greenscarf
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People with a diagnosis of Pernicious Anaemia need treatment with B12 injections FOR LIFE ! Testing the blood for B12 levels is not required (You will find this mentioned in U.K. guidance) You will always have a high B12 level with injections, but this doesn’t mean the B12 is getting into the cells . You need injections often enough so that you keep all your symptoms at bay . This can mean anything from daily to once every 3 months . We are all very different — with symptoms and how often we need injections.. PA is unfortunately not understood by the medical profession. On this forum we have made our discoveries by trial and error ! When first treating PA , patients often feel worse before feeling better . and yes some get acne . But this will all pass . With the medical ignorance that is involved , I had to take my treatment into my own hands and self-inject B12 ( weekly in my case ) In U.K. this involves getting B12 ampoules from online pharmacies in Germany as they are prescription only here . In Australia they are OTC . I believe .
I suggest that you appeal to fellow Australians ( we do have Australian members) for advice on how to go about this . Perhaps someone in Australia will see your post and get in touch If not just put out posts for help until you get a result . Indicate in the heading that you are in Australia
You need to get treatment , or you can.be left with irreversible symptoms ( as in my case ) Self injecting is easy and painless . Best wishes .
No of course not . We can only speak from personal experience . I obviously can only report on how things are handled here in the U.K. The PAS is a U.K. Society . And the official National Health Service guidance here in U.K. is that B12 testing is not required after a diagnosis of P.A. and B12 injections have begun at the surgery . Many doctors here do not read the guide lines , and when a patient has high B12 readings, they are then denied further injections , which is disastrous for them .. …. B12 readings will always be high with injections , and need to be .
If patients are enabled to self inject by their doctors, and therefore get a prescription for the ampoules ( which is a rarity in U.K.) then B12 testing is sensible , in case the patient is failing to administer the B12 injections, which would result in deterioration of their health , and a waste of the medication .
I must try to find the medical link that will state that that is the case . But of course , your doctor can just ignore it . I’m afraid that P.A. is one of the “Cinderella “ conditions . We have to look out for ourselves , until the scales fall from the doctor’s eyes . ( Goodness knows when that will be!) I have messaged with quite a few P.A. patients in the USA in the past . Some of them , who find getting sufficient ampoules for injection impossible, source Hydroxocobalamin single use ampoules from a German online pharmacy Some source Cynocobalamin ampoules or vials from Canada . Best wishes .
What is the strength of the tablets? If you have an absorption problem very high dose oral can be effective - that's doses of over 1000mcg per day but it doesn't work for everyone. Using serum B12 or active B12 to manage doesn't really work because the test is just too difficult to interpret once you have started injections.You could get the test results to find out what 'fine' meant.
When you say each injection made you feel worse - was that for a while then you felt an improvement? some people do find injections wipe them out for 24 hours and some do also get outbreaks of acne each time they have an injection.
Suggest you also get copies of blood tests before you started on injections as well and go to any private consultations with copies of all of them.
injectable B12 is OTC in Australia. I'm not sure what local guidelines are and I have a feelingnthat they can vary from state to state.
I didn't get any improvements from those monthly injections. Each one would make me feel weird for about a week and then that feeling would sort of subside until the next injection. Is this a sign of needing more injections?
I live in Australia. The package insert included with Aspen Hydroxo B12 for injection includes the following under "Dose and method of administration":
For PA with neurological involvement:
Initially. 1,000 micrograms on alternate days for one to two weeks.
The GPs at the bulk billing clinic I went to were quite happy to do this (and more). The GP who gave me most of my jabs said nothing when I asked him to give me a jab twice a week for several weeks. I now self inject every 4 days so I can keep up my recreational cycling.
All the package inserts for other manufacturers' B12 have similar statements, and also advise testing B12 regularly to "monitor treatment". I have not let any GP test my B12. I tell them there is no point as I know what the result will be.
I am not medically trained or a scientist but as far as I can find out the evidence that oral tablets are as effective at treating B12 deficiency as IM injections is of low quality.
To my mind, a lot more research needs to be done.
I'm in UK and it seems to me that there are moves across UK to put more patients onto high dose oral B12 as an alternative to injections.
My cynical view is that although this is sometimes promoted as easier for patients, it is probably a cost cutting measure.
Some forum members do manage on high dose oral B12 but there are plenty of stories on this forum from people who have found them ineffective.
Links below mention low quality evidence that oral B12 tablets are as good as IM (intra muscular) injections.
I live in NSW Australia and have PA/b12 deficiency. I have spoken with 3 GP’s who know nothing about treatment of these conditions. So, I rely on this site (thanks guys) and treat myself by self injection once per month. I know when I am due for an injection (if it is overdue) as my night sweats, numb bits and pins/needles come back. I buy the ampoules (Aspen hydroxo b12) and 3ml syringes over the counter from my local chemist. Cost is about $10/month.
If you are seeing your GP (and they understand the condition), ask them to test for ‘active’ b12, not ‘serum’ b12. They generally only do serum b12 and tell you it’s ok as it is within range. ‘Active’ b12 is what is being carried and supplied to cells, serum b12 is what is just travelling around in your bloodstream (in my layman’s understanding lol).
If you're not having much luck with doctors, take matters into your own hands and self-inject. Sounds scary, but there's lots of info about that on here. I just recently did my first subcutaneous injection (into belly fat) and it was no worries at all.
B12 ampules for injection can be ordered online from Chemist Warehouse, without a prescription. They have two different brands, you can order one of each per order, with free delivery. Posted to your door! Or I think you can go in and collect in store.
I'm in America h I wasn't given loading doses either. Gastroenterologist diagnosed. They prescribed & didn't know. Oncologist said I should have been given loading doses. I was tired after 2 weeks & started tablets in addition to the shots. He said that was okay as I didn't get loading doses.Now before someone on the forum slams my response...not all of us have Doctors that respond the same or bother to give us any info. All I have is what I find on the internet.
Hi greenscarf. I'm in Australia (Queensland) - from what I've seen it seems to depend entirely on the doctor you get as to the treatment you receive. I got lucky with a doctor who identified the issue immediately, put me on loading doses for a couple of weeks, followed up with fortnightly doses for another couple of months and then put me on the 3-monthly regime. When that wasn't working he was happy for me to experiment with my injection frequency to get what was right for me, which was fine until another doctor at the practice interfered (when the Govt changed the rules and the nurses had to (a) get the patient's permission and (b) get approval from one of the doctors at the practice to do the injection) and tried to put me back to once every two months. At that point I began to self inject, buying the B12 and gear on line, as we don't need a prescription for B12 (unlike what some pharmacists will say). My current doctor at the same practice is more than happy for me to SI as often as I need. So if you don't get any joy from a few different doctors, give them the flick and start doing the job yourself, starting with loading doses again - you clearly need injections, not tablets! Good luck.
Hi Greenscarf, I too live in Australia. I was diagnosed in 2018 with Pernicious Anaemia. From memory I had weekly injections of B12 for a month, then 6 weekly for a few months, then 3 monthly. A few months ago I went back to monthly. I am now back to 6 weekly. Daily life was a real struggle for me on 3 monthly shots. I am going ok again now. I have a very good GP. My GP told me it wouldn’t matter how many vitamin B12 tablets I took it wouldn’t work. Yes we have to have B12 injections for the rest of our lives. Best of luck for your search for an understanding GP. Keep us posted. 🙏🏻
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