hi my b12 injections were stopped in May given tablets instead I don't feel the same as when I have my injection,gp states doesn't know when b12 injections will be given .

Hi, Of course. I bought them from ... (sorry I have been told to remove the website name?!) Perhaps search for the brand available in Germany ... But The ones to get are Hydroxocobalamin 1mg and the brand is Rotexmedica depot 1mg/1ml
(don't know why to look for the word 'depot' that was the advice I was given. It's very cheap but apparently things will change after Brexit unfortunately. You can buy them in multiples of 10 or a pack of 100.
The needles I got from a local needle exchange pharmacy - That was on the advice of the Pernicious Anaemia Society. There is no charge, get wipes and a sharps bin too and they are guaranteed sterile ( apparently not always the case if you by from Amazon etc!) They will help you with choice of needles etc. depending whether you are injecting intramuscularly or subcutaneous.
Hope this helps. Let me know if you need any further info.
Good luck.
Anny. VERSANDAPO

Hi
Would you be able to share with me where you got your B12 jabs from in germany please.

Kind regards

Two weeks before my B12 injection was due and concerned about going to the surgery during the Coronavirus outbreak, I asked about self injecting. After four telephone calls and two conversations with different practice nurses I was refused a prescription but told to come for B12 injection the following week. Then received a call telling me all B12 injections were cancelled until further notice and that I "would be ok for a long time" - this was despite the fact that I was already suffering with severe symptoms of deficiency. I asked again about self injecting and explained how bad I was feeling and concerned about how it would effect my immunity levels. I also asked to speak to a GP about it. The GP didn't call me back.
Eventually after researching and asking advice from medical friends, and joining the PAS Pernicious Anaemia Society, I bought B12 Hydroxocobalamin from Germany (cost about 90p per ampule) and picked up needles, syringes, alcohol wipes and a sharps bin, from local needle exchange pharmacy (no cost). I self injected with no problem at all (did watch a few YouTube videos that helped).
I only wish now that I had gone down the self injecting route much earlier rather than waiting (over a month in total - for the surgery to reply initially, for the GP to make a decision, to wait for a GP call that didn't come). In that month my symptoms were making me feel desperate - I had headaches, extreme fatigue, brain fog, vision distortion, numbness in limbs, burning in feet and other symptoms. I felt anxious about going against what the GPs said and was of course unsure about how to buy the B12 etc but really it does not compare to how extremely concerned I am that the damage done to my neurological system will not recover fully after such a long delay.
It took 3 days for the B12 to arrive from Germany, 1hr to source the supplies of syringes and needles and at such a little cost. So for anyone else in the same situation - please don't hesitate.

My response was for the person who said they were given methylcobalamin by the way.

That sounds like Methylcobalamin which I don't know much about , I'm a p.a sufferer and I only take hydroxocobalamin which was explained to me to be exactly what I should take or anyone who has pernicious anemia and this was from a specialist and a doctor, the other forms might be for just a b12 deficiency but hydroxocobalamin is what you want, hope this helps. My injections have been cancelled just now in Scotland and I have to do it myself.

I spoke to my community nurse daughter about this who said the GPs were ‘naughty’ and had left a lot of people to sort themselves out. The community nurses would visit and give injections but only on referral from the GPS. Not satisfactory.

Haven’t read all the replies but my dad has PA and he can inject at home? Maybe this is something that can be discussed?

Or got to say yes, H and Barrett Richmond is open today (Mon).

It’s just my usual NHS GP practice, Acorn Group Practice in Twickenham. Like others in this thread it took a lot of phone calls to finally get a call back from a GP. After a couple of calls I checked the PA website which advised explaining politely to receptonist that you are 100% dependent on the injections and missing one will also make you more vulnerable to infection. When they did call back was all sorted very quickly. They are holding what are called ‘clean clinics’ which (I think) also cater for infant vaccinations and possibly some other conditions. You go in when there are no other patients around. I suggest to any other PA sufferers out there it is well worth joining the PA society. As a member you have access to more information, advice and a helpline. And they are worth supporting as they are calling for more research,
more efficient diagnosis and better understanding of PA.

My daughter has been redeployed to the community nurses though not in your area. I’ll ask her how they deal with people in your situation and how to get added to a list for visits, if that’s possible.

Hi... you mentioned you are Richmond too. Where is this clinic as I desperately need an injection. So glad you managed to get yours done and I’ll definitely try and get this mouth spray you mentioned. Is H&B open at the mo?

Hi... you mentioned you are Richmond too. Where is this clinic as I desperately need an injection. So glad you managed to get yours done and I’ll definitely try and get this mouth spray you mentioned. Is H&B open at the mo?

Ditto. I live in Richmond and I’m a pernicious anaemia sufferer too and long overdue my injection and prescriptive folate. Spent the last 4 weeks feeling very poorly, totally numb now on right side, extremely fatigued, diff to swallow, brain fog has set in, and eyes are now struggling too. They needed to put me on hold as they couldn’t be sure whether I had the COVID as also had heavy chest , very mild temp and cough and they deem B12 as non urgent which utterly astounds me considering the damage it can do to us sufferers without it, it’s called pernicious for a reason ! As I’ve had a break in treatment they’ve taken some bloods (tues 14th at Seymour house on sheen road so there is a nurse in action at that practice) and they say that they could possibly do an injection tomorrow as it’s so overdue once the doc has looked at my test results. However earlier this week I spent sometime looking online for a home injecting kit from a private clinic just in case. I’ve ordered from Dr Ayanna based in Brighton but it’s something beginning with an M instead of the usual Hx (there is some debate as to whether M is superior than H anyway) but it is a lot stronger so ordered their lower dosage. Obviously nervous about injecting myself and with a new drug that I haven’t taken before but if it comes to the crunch I’m feeling so utterly wretched that I would take the chance. They are closed however so when I call there is no one to answer questions on my order. I’ve had confirmation through but it’s standard mail delivery and I know that even first class letters are taking over a week to get delivered!! I’m a single mum of one and I can’t spend any more time out of action. Difficult at the best of times let alone given the current situation. Best of luck with it. Hope this helps

Cytoplan and Solgar offer sublingusls which melt under the tongue and are high dose enough to be effective if you take one a day. The sublinguals are mentioned in the PAS ( pernicious Aneamia Society) information regarding the recent withdrawal of injections. You can find this information on the internet. Sublinguals are shown to be effective in medical research papers if you look for them. Don’t swallow the tablet, let it melt under your tongue so it goes into the blood stream.

Forgot to say the sublinguals are Cytoplan B12 methylcobalamin and adenosylcobalmin. The Solgar are just methylcobalamin.