New NICE guidelines

[BeachArt]

I have had a quick look at the new NICE guidelines. I cannot see anywhere where they advise on frequency of injections. It does state that if symptoms have not improved sufficiently to 'increase the frequency of injections if needed, in line with the summary of product characteristics'. Does anyone know what this actually means for hydroxocobalamin injections? Thanks

nice.org.uk/guidance/ng239/...

[Sleepybunny]

Thank you for posting a link.

I haven't had a chance to read through it but hope to do so soon.

There will be articles in the medical press about the new B12 deficiency guideline (NG239) and maybe in other sections of Press/Media which may be worth looking at.

I hope PAS will comment on the new guideline and Tracy Whitty from B12info.com

I'm sure various forum members will comment over next few days.

[Sleepybunny in reply to Sleepybunny]

Is it okay to mention some of the things I've noticed so far about the document on your thread?

[BeachArt in reply to Sleepybunny]

Sleepybunny.....of course

[AJackson21]

the only reference I could see was towards the end, if symptoms don’t improve increase frequency as per the medication insert but still they’re suggesting to put people on oral unless autoimmune gastritis is confirmed… also didn’t see one mention of pernicious anaemia unless I missed it?

[Sleepybunny in reply to AJackson21]

At start of document under list of recommendations they explain that they are not using the term pernicious anaemia and they link to a definition of auto-immune gastritis.

[Sleepybunny]

Hi BeachArt and other forum members.

I've only skimmed the document but must admit to feeling a bit scared, my impression is that they are promoting treatment with high dose oral far more than the previous NICE CKS (Clinical Knowledge Summary).

I think people with confirmed auto-immune gastritis (AIG) will probably be okay but I don't have a PA diagnosis or AIG diagnosis and suspect that after this document is read by ICBs and Health Boards that many people currently receiving B12 injections will be subject to a review of their treatment.

For others like me who don't know why they are B12 deficient, there is a section "Unknown causes of vitamin B12 deficiency".

There is a section "Symptoms have not sufficiently improved, got worse or are new" which suggests that people on oral B12 treatment could change to B12 injections.

There are some good bits in the document , will go away and digest it all and comment again later.

[Zebra20 in reply to Sleepybunny]

I just started Medicare here in the US and was shocked to see that not one formulary covers B12 injections!

[WiscGuy in reply to Zebra20]

I am in the US and on a Medicare Advantage plan. I self inject daily. My prescription is for 90 doses, refilled every 90 days (re-authorized by the physician periodically). My Medicare Advantage plan pays for the Cyanocobalamin and the syringes, with me paying a small co-pay. It might not be listed in formularies because there is no brand-name Cobalamin. My Cyanocobalamin initially was made in France; within the past year I have begun receiving Cyanocobalamin made in Portugal. There was no brand name on either one: on the current packages it says "Cyanocobalamin" and "Injection, USP" in relatively large type, and "Sola" in smaller letters, followed by "Pharmaceuticals" in tiny print.

[boisland in reply to Zebra20]

Zebra20 - In the US.. I am on traditional medicare (not advantage plan) and my supplemental drug plan does cover cyanocobalamin. I think there are 2 issues here: 1) *As WiseGuy stated B12 (cyanocobalamin) does not have a brand name. 2) B12 for "injections" is a nutritional supplement, not a medicine. It is the FDA in the US who works to ensure that dietary supplements meet applicable safety standards, hence not sure you would see on a formulary. *Please know that I have seen B12 carry a brand name, however very unusual. The brand name was dodex. The reason I know this I went to pick up my B12 prescription and pharmacy could not find it because they were looking for cyanocobalamin prescription and it was under dodex. For 1 month they has a supplier change to dodex. That has never happened again.. try using goodrx if necessary

[WIZARD6787 in reply to Zebra20]

It may be that B12 is classified as a food supplement and does not have a pharmaceutical number.

This is also why physicians do not get paid by the pharmaceutical companies. Not all physicians take this money it is not a commission.

I do not have an issue with bribe as it is the cost of doing business in our world. However I do not respect those that take bribes and have the false brand of being nobel. It makes a difference to me that the state is licencing those that take the bribe.

[PAScomms]

PAS has a press release and a statement

You can read our full statement here: pernicious-anaemia-society....

as members of the B12-Alliance we also support the following statement:

club-12.org/b12-alliance

Users of HealthUnlocked can really help us by liking, commenting and reposting/sharing our social media posts today and in the coming weeks to raise awareness. thank you.

[OldmanD in reply to PAScomms]

I am so glad that we left NHS land. . . . . At least I am alive. . . . . Def wasnt planned, it just happened that I found a better healthcare system. . . . . . We have been so long led to believe that the NHS has no match in healthcare we just dont seem to give up on that fantasy. . . . . .When my GP, great lady she is took my blood after me saying I was becoming increasingly exhausted during covid followed by the call to come see her also during covid.. . . . . After some loading jabs also during covid Nursey ask me was I feeling any better to which I replied. . .Weird feelings in my head but energy is up a little. . . . . Next thing I knew I was heading for camera up and down. . . . . Apparently that is normal practice to make sure nothing untoward is going on. . . . . . I mention Covid because we were restricted a bit in healthcare during covid everything did not stop. . . . . The GP surgeries remained open. . . . . We even seen people and GP's in the carpark. . . . . . My wifes family in NI simple could not see a GP, it was like they had disappeared. . . . . 3 ,6 , 12 month injections simply didnt happen and many still havnt happened even as yet. . . . . . . . So to see in the report that in the UK very few have such precautions bestowed upon them and I'll presume NI is worse is bewildering but not surprising. . . . . . . There are farmers out protesting yet the Peoples Healthcare System is being dismantled around them and not a word . . . . . Bevan would be turning in his grave if he could see what was going on. . . . .