No more injections for 3 months

[katamarang]

hello,

Just wanted to get the thoughts of forum members on this...

My b13 levels have gone from undectectable to over 2000 since having 6 loading injections of hydro. I've been tested for the intrinsic factor and should get the results by next week. My GP doesn't want to give me any more injections for 3 months. Breathlessness has been my main symptom and its gotten a little better but is still definitely an issue. My GP said that it can take up to 3 months for the old red blood cells to die amd be replaced by the new red blood cells with b12 in them, and therefore it would be pointless to have more injections until I've waited 3 months to see if my symtoms have improved? And also pointless because my b12 levels are currently way above what I need and I'd just excrete any extra :/ I've read so many different things online, just wondering what people think about what my GP said, and if there's an argument I should present to him for having more injections? Or if he's right?

Thank you

[wedgewood]

I’m afraid that it is a sad fact that in general , the medical profession is quite ignorant about Pernicious Anaemia . . And this becomes very obvious when reading the posts on this forum . You are bound to have very high B12 readings after. 6 loading injections. If you have P.A. . you must have high readings , and in the latest guide lines for treatment , it is pointed out that retesting is pointless . Your levels must stay high.

The Intrinsic factor antibody test is a terrible hurdle for P.A. patients , as about 50 % of P.A. patients tested get a negative result ! Strange but true . Your doctor may well not know this , and assume that a negative result means that you do not have P.A. So be prepared .

I can only explain the need for high amounts of B12 needed by P.A. patients by describing filling a jug with water , and only the overflow water is available for use . And we are all different , and need our B12 injections at varying intervals . This is another fact that is not understood . I cannot go for longer than a week before my symptoms start to return . I know someone who needs an injection daily . My neighbour is fine on a 3 monthly injection .

This is Pernicious Anaemia! I have to self- inject to keep symptom free . , which fortunately is easy and cheap ( about £1.50 , everything included.) Luckily you can’t overdose on VitaminB 12 ( although my GP told me that too much was toxic! )

GPs are trying to get out of. giving B12 injections at the moment . Many P.A. patients are being told to take tablets instead . We hear of this on a daily basis on this forum . So that is a other hurdle at the moment .

If your symptoms start to return before 3 months , you must tell your GP, and ask for more regular injections. I wish you all the bast .

[katamarang in reply to wedgewood]

Thank you for this!

[Hidden]

Part of the issue I had with 2 different doctors telling me last week that I did or didn’t need a blood test was that they’d expect your B12 levels to normalise a bit more after loading jabs. I’ve never been explicitly told to wait 3 months but after my loading doses finished I was told I’d get my next jab in October. I was told yesterday that given the symptoms worsening I might need it sooner. I’m waiting on my B12 blood results that I insisted on getting. If it’s affecting your quality of life I’d keep prodding. I’ve had to lose my temper with doctors recently because they weren’t listening and I’ve got lucky with an amazing nurse practitioner who’s dedicated to the right result for me. If you’re not happy keep plugging away at it.

[Cherylclaire Forum Support]

A lot of GPs will stick to the 3-monthly regime after loading course finished. The medical guidelines (2014) say 2-3 months, and if you have neurological symptoms, it is 2 months. For those with neurological problems, this is supposed to be after loading injections of every other day continue until no more progress can be made, usually reviewed at around 3 weeks. In truth, I think this rarely happens.

I wouldn't assume that the regular injection regime won't work for you. We are all so different that it is never clear who will or won't cope (yet). I need an injection every three days and self inject now, my cousin is fine with one every 6 weeks from her local surgery.

There is current research looking into the reason why some can cope at 3 months and some really can't. The trials looked very promising as the two groups showed clear differences.

Might have a long wait though. Meanwhile, you can read more about this on the PAS website.

[katamarang]

Thank you all, really helpful! 😊