I'm one of the very fortunate minority who've had B12 on prescription for eod self injection for the last 9 months. Every time I reorder I'm on tenterhooks that it won't be allowed. After my recent neurology appointment I received a text inviting me to make a gp appointment to discuss my B12 "usage", and the prescription was suspended. Well, that wording infuriated me for a start - would a diabetic be quizzed on insulin "usage"?? It makes it sound like a lifestyle choice not a lifesaving medication! Anyway, deep breath... So jumping through the usual hurdles I got a face to face appointment with the gp who originally authorised the B12. Took my husband for 💪 Had to walk the tightrope of explaining how much better I am with eod jabs, but feel there's still more improvement possible so should continue at that frequency, and yes of course I want to taper down but in a controlled way. Phew! He agreed to reinstate the prescription.
It was the pharmacist who suspended it, so I asked for a note on my files to stipulate that this wouldn't happen again before discussion with the gp. He dictated it on the spot, possibly to get rid of me 😂
Very relieved, but disheartened I have to go through the stress and anxiety and I feel from the conversation that my gp will refuse at some point, its just a question of when. Maybe inefficiency will come to my rescue and he'll just overlook it...
But I'll take the win for the moment!
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Myoldcat
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That’s a HUGE win - well done you! A very stressful experience which you coped with and survived!!
I keep notes by exception now so how I feel when I miss a jab or over do it so that I can show I am not at a point where I can contemplate reducing my injection frequency- but as you say phew!
So wrong that we're at the mercy of computer systems and staff with no knowledge of our individual circumstances.I was getting 12 ampoules at a time, then asked for 15 as they come in boxes of 5, so it saves the busy chemist from having to open a box and loosely pack 2 vials in a flimsy box. Made more sense to me!
Well I don't think a gp or pharmacist would like it done to them? I was polite as always, and asked from the viewpoint of whether it was possible to ensure this didn't happen again as it was very stressful... at least my gp is willing to discuss things.
Wait, your pharmacist said to stop your injections? Who are they to say that? They are not your doctor. Wow I am so glad that they reinstated it. But it's terrible that you have to jump through hoops like this and be scared that they're going to take it away at any time. I know that feeling. Here in the disgraceful, crazy, upside down world of the US, I just ordered 2 years worth of b12 because Scump is going to put tariffs on all Imports and he's going to stop a lot of different medications, etc. And I'm scared he will not allow me to get my B12 from Germany, or i won't be able to afford it, so I had to order some in advance. It's still not enough to last his full term. I couldn't really afford more but I also didn't want to horde it from others that also need it. What can we do about fixing this? If people can get weight loss injections why can't we get our B12? If people can have insulin why can't we have our B12? What is it that is making them do that? There must be some kind of little scam involved. Why all the lies and secrecy and gaslighting over a simple B12 injection? Sorry for the rant but it's a serious problem.
I completely understand, and you're not ranting just asking sensible questions. I'm not really a Big Pharma conspiracist, but do feel that as B12 is not a big earner for drug companies there is no incentive to promote its use. Unlike the Ozempics, etc of this world! If it was a high value product you can bet pernicious anaemia would be far better known, and people would be over diagnosed and overtreated!
You were smart to order up. I didn't think of the connection and that tariffs would affect the B12. Thank you for the wakeup!!
What kind of B12 did you get from Germany? I was using amazon and now I can only get the cyanocobalamin form from Germany shipped to US. Are you using amazon.de for your B12 orders? Is there some other way to order from Germany? Thank you EllaNore.
Thanks. I don't know for sure if tariffs will affect my ability to get B12, but I can't take that chance. This is what I get from Germany. It's also cyanocobalamin. I've had several different types and they all seem the same to me, personally. I can't tell any difference. shop.apotal.de/b12-ankerman...
I have not used Amazon.de I'm not sure it's avails to the US. But I have not checked. I just buy direct from the pharmacy above. And these are the syringes I use.
Glad to hear that you have at least bought some more time. Well done.
I found that very gradual improvement continued with EOD injections - until finally after 2 years, I felt able to reduce back down to every third or fourth day .
I say "reduce back down" because once my GP had established that functional B12 deficiency was the cause of my lack of response to the usual loading dose and deterioration on the 3 month "maintenance" regime, she was able to request 2 injections a week for me. This was the nearest to EOD that the nurses were able to provide. And it worked - at least for 6 months.
At the point where it got worse again, the GP accepted that she had nothing further to offer me and sent me to secondary care for answers. I soon realised that this would be a longer process than I'd expected, and soon started self injecting EOD to see if this might get me further improvements.
A consultant, worried about my B12 test result being beyond what was measurable, explained that he thought it might possibly be increasing. This seemed a reasonable concern. He voiced this in his report back to my GP - and made a request that if I gradually reduced my injections, I would be monitored closely and supported at primary care level. This was something I'd reluctantly agreed to, but luckily did not happen. [I wasn't about to push for it !]
A few years later, this same consultant said the following, during an appointment:
"I have been discussing you with colleagues - I was wrong about persuading you to reduce your B12 injections. Your body needs this frequency to function. And, of course, tablets won't work for you."
This statement was made in front of a group of his students.
How marvellous to hear that your consultant actually learned from you. My gp has been good, and at least willing to discuss things, but I can tell I have pushed his B12 prescribing to the limit, and I'll be under pressure to cut down soon. Unless general surgery inefficiency triumphs, and they forget about me...
Time to drag out the diabetes analogy... why can't they understand that we are incurable, will never NOT need B12 injections, and count themselves lucky that our maintenance drug is very cheap and extremely safe? How much will they be paying out for Ozempic users? 😡
Maybe we need a high profile negligence lawsuit to focus attention!
Your GP may also be under some pressure here from the practice auditors !
I always thought that my GP was doing her best for me, and certainly going against any usual treatment regime used there. She was communicating throughout with consultants and knew what tests to request, what areas to focus on, what to rule out - and used her expertise to monitor me.
True, we don't know what goes on behind the scenes. My gp has put me through a thorough testing - IFAB, MMA, parietal cell antibodies, homocysteine, etc and a neurology referral. All were quite disappointingly normal. So once he'd exhausted that, there seemed an expectation that I should be better by now. Even with a very strong family history of PA.Well as I explained, I AM a lot better, but still have a long way to go. I didn't want to si under the radar for the sake of those who might come after me, but if I ever can't get enough supplies I will have to do just that. But of course then gps don't see the true numbers of people who need more than 3 monthly jabs, and the situation will never change.
Well, I did tell my GP that I was self-injecting EOD ... but only the day after I'd done the first one. Haha - worried she'd try to talk me out of it (wouldn't have been difficult: scared stiff !) To her credit, she didn't though.
She did once say to me that her other patient with functional B12 deficiency managed perfectly well on the 3-month regime. I asked her how she could be sure that the other patient wasn't just less honest about self injecting !
We don't even know the true numbers - although the right-hand column on this page entitled All Things Pernicious Anaemia has a survey which is quite revealing.
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