By the way, I am in the United States. I am treated by UNC Healthcare (a large trauma, teaching facility and referral center). Shockingly, the physicians here use the old protocol of 1x per week for 4 wks followed by once per month irregardless of severity of def or neuro symptoms. I received one extra weekly after badgering my MD. The different MD groups all seem perplexed by my issue. One even said..."who knows how B12 neuropathy progresses or what it affects...we never see it". The Hem doc said he has been in practice for 40+ yrs and maybe sees 1-2 cases per year and not as severe as mine. And only old ladies on toast and tea diets or alcoholics. He did not even believe I required a Neuro consult or MRI but ordered one anyway at my persistence.
I have learned of the UK protocols and I am amazed NHS allots injections every 3 months after loading doses. I struggle with monthly and have no idea how many of you suffer during the 90 day waits. I hope the protocols are changing and if the info I read was wrong I apologize.
My heart goes out to anyone dealing with PA and red tape of regulations. It is a vitamin and not a narcotic. What gives?
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Pappup1
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You will find that many of the U.K. members in the PAS are self-injecting . In the States , I believe that the Cynocobalamin form of B12 is the type of B12 in general use . In the U.K. we use the Hydroxocobalamin form , which has now replaced Cynocobalamin . This is because Hydroxocobalamin is reputed to stay in the system for longer than Cynocobalamin . So in general we get our injections from the NHS every 3 months , or every 2 months if one can convince the doctor that one has neurological symptoms ( difficult ) Anything injectable is only obtainable on prescription in U.K. even saline ! It’s the same in Germany unless the substance is harmless like vitamin B12 . ( Thank goodness)
Martyn Hooper founded this society in order to help sufferers who remain unwell on the regime here . He also constantly in touch with the health authorities in order to get better treatment and understanding for Pernicious Anaemia . This is an enormous task .
Have you considered self-injection? You are in the same position as we are in U.K. We can also
only get B12 ampoules on prescription . We can obtain them from German online pharmacies and from Amazon.de But I do know that you can obtain Methylcobalamin ampoules from VitaminQuick.com in Florida . They are the most expensive form of B12 . Vitaminb12online.com in Australia supplies all forms of B12 .
Well , give it some thought . You can self-inject using either sub-cutaneous or IM method .
Wishing you all the best .
PS — If you put an order in the shopping basket on the vitaminquick site , but don’t purchase , they will get back to you and offer a 20% discount if you complete the purchase ! It takes several hours for them to get back to you .
The difference in protocol between us here is that the NHS uses hydroxocobamalin as opposed to the cyanocobamalin you use in the U.S.A.
However many thousands of P.A. patients here cannot cope with either the 60 days advocated by the NHS for those with neurological symptoms, or the 90 days for those without and we too suffer with "one size fits all" doctors who won't budge and have little or no knowledge of the dangers of Vitamin B12 deficiency.
Personally I have been on cyanocobamalin since being diagnosed with P.A. in 1972 and for most of some 39 years I struggled come the fourth week in the run up to my next scheduled injection so I used to slip in the occasional three week appointment with my practice nurse. However I made a mistake on one occasion of saying "see you in three weeks" and she said "Your prescription says every four weeks" refused to give me it and reported me to my doctor who insisted that I must abide by what the script said.
That's when, some 7 years ago, I joined the Pernicious Anaemia Society and asked the question on their then forum "Am I the only person in the world who feels the need of more frequent injections?" and was amazed at the response. NO! I was not alone.
After a lot of argument I now have my injections every three weeks.
The reason I am still on cyano is that when hydroxocobamalin was "introduced" over here in the 1980s I had an allergic reaction to it and so have continued with the cyano ever since,
Perhaps you could show your doctors the following:
Hello Pappup1, I am also in the U.S. Getting frequent injections can be a hassle here so it can be very helpful to have information, including printed materials. The Pernicious Anemia Society of UK is a great help. I was fortunate my original doctor prescribed 2 self-injections per week for life -- that's unusual here. Since I've moved, I've had to be very assertive to get that prescription covered by a new doctor. Pernicious anemia is considered a "cured" disease, with set standards for treatment. Many health care providers here may not know of new knowledge and may not be comfortable learning from a patient what's new. Be prepared and be persistent. Good luck. I am writing a different post issue about costs for cyanobalamin.
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seeing neurologist, advice on b12 injections welcomed…
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