Help with next appointment following loading doses

[GW1000]

Following a B12 of 194ng/L (187 - 883) in August, in Sept it was 208. MMA and Folate both “normal” but Homocysteine was slightly above range so I have been given 6 loading doses and daily Folic Acid. (I don’t have the actual results other than the B12).

I didn’t have any really noticeable response to the injections until a few hours after the last one. My hands were burning hot in the evening and the next morning my mood had improved dramatically. Through that day my hands stopped being so hot but were tingly all over. I had a few more days of tingliness to varying degrees sometimes including my feet and my arms but am now back to just the same slight altered sensation in my left hand fingers that has been there for well over a year. My mood remained a little better for a few days but is definitely sinking again. I find mornings the worst. I came out in a few spots too.

I think I need to be treated, as per the guidelines, with alternate day injections. I have an appointment next week. I’ve already emailed outlining my experience with the injections so far and quoting the NICE guidance and asking if they agree it should apply to me.

Would you agree that I’m asking for the right thing?

What else should I do to prepare for the appointment?

Has anyone in a similar situation succeeded in getting alternate day injections on the NHS?

Many thanks

[Nackapan]

Yes but it was 5 weeks after loading and I suffered. I was supposed to wait 3 months .

I got slot worse before improvements started.

The spots are a known side effect

But then I had them for 5 months EOD.

Then weekly then 2 weekly

List your neurological symptoms as every other day until no more improvement is governed if neurological symptoms present

[Hockey_player]

My husband gives me my injections and it saves a ton of time as compared to having to go to a doctor to get one. It also means I can choose how often to have them based on my symptoms.

[Ghound]

Hi GW, You are definitely doing the right thing ! You may have to put up a ( polite but firm ! ) fight for more frequent injections, but you should be treated according to NICE and BNF guidelines as you have neurological symptoms.

I didn't have resolution of my symptoms until I'd been on every other day injections for nearly six months.

I had to stand my ground and insist on these against a certain amount of opposition.

I kept my communications with doctors succinct and with reference to the official guidelines, but with a polite, veiled threat of escalation should my condition be allowed to deteriorate !

Wishing you all the very best x

[Nackapan in reply to Ghound]

Yes I did the same.Persistence .

Still get my prescription challenged over 5

later.

So far keeping it.

[Ghound in reply to Nackapan]

It's ridiculous what you, and all of us have to go through, isn't it ! 😠 xx

[GW1000 in reply to Ghound]

Thank you both. It’s good to know it can be done! I’ll get my ducks lined up (again!). Being succinct is something I need to be better at. I tend to say far to much and end up with an emotional outburst which doesn’t really help. Thanks again.

[Ghound in reply to GW1000]

You're very welcome. Oh, I have to fight the impulse to get emotional and rant all the time! 😆 xx