Hi all I just wanted to update you all on my success to have my injections increased to every eight weeks. As you May or may not know the background to this I will just say briefly that last year had my injections stopped. I then successfully got them reinstated at every twelve weeks but when I went on holiday in June and then September, bought them over the counter and the pharmacist administered for me at the rate of one a week. Had a brilliant holiday. So a couple of weeks ago had my usual 12 weekly one but had a conversation with the nurse who agreed to make my next one ten weeks and she would have a word with the doctor to make this a regular time. Well had a telephone call to say that the doctor had agreed to eight weekly. Sorry for the waffle but feeling very emotional at this amazing outcome. Just shows that sometimes gently arguing your point can work. I truly wish for successful outcomes for everyone else and will continue to talk to my medical team in the hope that they listen for others. Thank you for all your support and I wish the same for everyone. Am being incoherent here as so emotional, sorry.
Successful outcome: Hi all I just... - Pernicious Anaemi...
Successful outcome
That's good to know Soulsister and I'm very pleased for you.
Thanks for telling your story and I wish you well.
Thank you clivealive, it has been with your support that I have been able to fight my corner. I am very grateful for all the support I have had. I will continue to push for better treatment for anyone who needs it. Am really in shock and quite emotional at how easy it seems to have been for me as I know how hard some people are fighting for just what is right for them. Yes my own story has had a happy journey so far and just hope it continues. I have no reason to think it wont but I think we all have in the back of our minds that things can change. Thank you once again and I wish you well.
great news
Thank you Gambit62, you too have helped and supported me. Can’t thank people on here enough for advice and encouragement. It really means a lot when others understand. X
Really pleased for you.
Hi,
Great news, gives an incentive to others to keep fighting.
For anyone else reading this thread..
In UK BNF (British National Formulary) guidance on treating B12 deficiency has changed recently and UK GPs may not know this.
PAS news item on BNF change
pernicious-anaemia-society....
BNF
bnf.nice.org.uk/drug/hydrox...
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Thank you Sleepybunny, I did mention that the guidelines had changed and the nurse did give me that look but she must have taken some notice as she spoke to the lead doctor at my clinic and got this agreement so maybe they are trying to keep more up to date now they have this doctor taking responsibility. Just wish things were better for more people. I have been very lucky and wish everyone else luck for their problems x
I am pleased for you. My gp wants proof of change in Nice Regulations as he cant see any changes in recommended doses. Does anyone know where i can download sonething to show him?
Hi Sheepysammy, I read about the changes on the PAS site, copy below
Yesterday we received confirmation from the British National Formulary (BNF) that they have changed their recommended treatment for Pernicious Anaemia without any neurological involvement. It’s only a small change but it’s a big step towards our final goal of getting patients treated according to their individual needs.
We know that most of our members struggle with the UK’s three-monthly treatment regimen and most will need an injection sooner. The new treatment regimen has been changed from ‘every three months’ to ‘every 2-3 months’.
Dose amendment
This is what they say:
“We have reviewed the dose of Hydroxocobalamin for the treatment of Pernicious anaemia and other macrocytic anaemias without neurological involvement. As of September this year we have amended the dose to the following;
BY INTRAMUSCULAR INJECTION
Adult: Initially 1 mg 3 times a week for 2 weeks, then 1 mg every 2-3 months”.
And they say more:
“As you have highlighted this previously was 1 mg every three months which we understand was restrictive to treatment”.
Treatment based on individual needs
“Although this is only a small change it does lead the way to patients getting treatment according to their individual needs” says PA Society Chairman Martyn Hooper MBE.
“We will continue to campaign for treatments based on the individual needs of the patient but this small but significant change means that we are being listened to and we can bring about change by producing relevant evidence” he says.
So, if you are struggling to manage in that third month please point your GP towards the new guidance in the BNF.
Our thanks to Dr. Nicola Ward for her work in producing the Review which was well received by the BNF. Also this was dated 28th October 2018.
Hope this helps xx
Hello soul sister, I am in the United States. I am not clear on how many injections you get per week? And how often? Weekly or monthly?
Hi MelanieV, I used to get my injection as one everyone 12 weeks, then they were stopped and to cut a long story short I got them reinstated as the same regime. At that time Imsaid that I felt I needed them more often but the doctor said she would have to get permission. Anyway when I went a couple of weeks ago to the nurse I mentioned again that every 12 weeks were not sufficient so she made my next appointment for 10 weeks and said she would speak to the doctor. The nurse telephoned me to say she has spoken to,the doctor and she has agreed I can have my injection every 8 weeks. To me this is ideal so far. The guidelines have recently been amended from three monthly to two to three monthly somit still all depends on the individual doctors. Hope this clarifies for you x
so weren't you supposed to get the loading shots of 3 per week for 2 weeks initially? Did you not get those at first? If you were only getting one injection of 1000mcg per every twelve weeks, how long did it take for you to get better? Or were you getting one injection per week for 12 weeks? I am not clear. So sorry.
I was first told I was B12 deficient several years ago when chasing my previous doctor up on hearing loss. Long story so won’t bore you. He telephone to tell me and asked me to go to see him as soon as possible. I was then given loading doses and the went on the 12 week regime. Because the permanent hearing loss could have been due to him not sending me to hospital immediately and the fact that he was informed about by B12 issue some time before he informed me i changed doctors in the hope that the one I now attend would be a little more on the ball. But like all our doctors they are rather overwhelmed with lots of information about all conditions. Anyway I did get injections whilst on holiday so didn’t really miss out.
what is the 12 week regime, is that one dose per week? or one dose every 12 weeks. How long did it take for your weakness and off balance to go away?
Hi MelanieV, 12 week regime means 1 injection every 12 weeks, this is standard in the UK unless you are very lucky with your doctor. Don’t think my weakness has gone away exactly but improves after an injection but then deteriorates when my next one due. Now I am on 1 injection every 8 weeks that should improve somewhat. I do have other health issues that contribute, one problem I have had for years is suddenly having a bad reaction to medication. Several now on the list for not taking again. Just have to keep doing what is best for me and hope it is right.
Can’t u get 1 injection per week from a holistic doctor? We can do that here in the us. We can even get them at beauty spas and they are only $30.00
I am not sure about holistic doctors or spars as we cannot buy in the uk. I think others on here my be able to answer better than me. I think if you are wealthy and as long as it is not mentioned it is for health reasons there may be places. But I know from what I have read on this forum that selling for medical purposes has been stopped. Gambit62, clivealive and Sleepybunny may have that information. There has been a petition to allow B12 to be bought over the counter as it is put but not sure where they are at as these things always take such a long time to be either accepted or rejected. Although B12 is a vitamin there are still some who say it can be dangerous if you overdose, so the argument goes on.
Well done, I know how much better I feel from taking things into my own hands, as GP would not consider treating as just in range. At about £1 a shot it’s the best money I spend!!
Well done, Soulsister - it's not easy to get injection regime changed from "the norm" - which seems to have become 1 every 3 months.
As you rightly pointed out, the new advice to GPs is every 2 - 3 months, after loading injection course, which allows GPs some leeway to go with their own observations rather than be led by consultants reports. Not much leeway, though, which is a shame, because GPs are more likely to know when you seem visibly better or worse, or if you are behaving differently.
I also have an NHS injection every 8 weeks, not 12; I have to remind the nurses, which leads me to believe that this is a rare concession at this practice !
I self-inject every other day, which they are all aware of, and no longer question - probably because the difference it has made is very obvious. "Gently arguing my point" would have been quite beyond my capabilities at my worst, though. I can only congratulate you all the more for that !
Thank you Cherylclaire, after they stopped my injections I sent a link to the practise manager stating they were not following the guidelines, he promised to pass the link onto the ‘lead’ doctor on this matter. After a couple of weeks, when I hadn’t heard anything I contacted him again asking where things were at as I hadn’t heard about having my injections reinstated. The next thing was that he telephoned me and apologised as he hadn’t realised that was my intention and there and then made an appointment for me with the ‘lead’ doctor. She agreed very quickly to reinstate and apologised for the surgery not arranging a follow up appointment after stopping mine as that was the intention. She has noted on my records that my B12 is for life and then as stated in my original post has now agreed to 8 weekly. So in my case what I did has worked but unfortunately I know it doesn’t for everyone. I was also quite honest about having 2 injections whilst on a 2 week holiday in Rhodes and 3 more when on holiday there again for 3 weeks. My hubby says I must be scary lol. Just wish this scenario worked for everyone. Stay well x
You did well, Soulsister !
Wish things were the same here as in Greece: injections easy to get at a chemist when there is a need, and your medical records are your own responsibility.
This is after all, just a vitamin we're talking about. It's the deficiency that is the danger and not the treatment. Why does it not feel like that here ?
B12 frequency & levels
UPDATE.....
Spacing out injections
B12 injections
Arrrgggg, so angry.
