Reducing B12 injections to 2 per week

[Me2801]

My 20 year old daughter who is a uni student has been having B12 injections alternate day since the end of October. We had to battle to get these despite B12 of 189 and neurological symptoms (numbness, tingling, pain, tinnitus). She has and is continuing to improve but the GP now wants to cut these down to 2 a week and also believes her symptoms are due to cfs rather than B12.

I would really appreciate people's thoughts on cutting back by one injection a week when she still has symptoms - I can't understand the GPS logical when she has a patient who she can see is improving. Thanks

[fbirder]

I'm afraid I'm with your doctor.

The if Inge are still improving after 4 months of alternate day jabs then they're improving very slowly. So slowly that it's very, very likely that less frequent jabs will do just as well. Frankly, I'm surprised they've suggested two a week. I would have thought one a month would be a more realistic scenario.

If the doc is agreeable to going back to alternate days if she gets worse again, then I can't see any problem.

[Me2801 in reply to fbirder]

Thanks for reply - is the improvement we have now the best it's going to get? She still has symptoms although she's dramatically better than 4 months ago. I was hoping there was still room for further improvement?

[Hidden in reply to Me2801]

No, that is not all the improvement she can have. You may read or hear that any neuro complications lasting beyond the first year of treatment are permanent, but that is not necessarily true. My experience is that with adequate treatment, improvement can still come. Some of it comes only slowly. It can all take a long time. It can take years and years.

[clivealive Forum Support]

In addition to what fbirder has said can I ask if your daughter's Folate level is being monitored as a"healthy" level is essential to process the B12 she is having injected?

[Me2801 in reply to clivealive]

Yes thanks her folate is being monitored and she is currently taking a supplement.

[sallyball76]

My daughter is 16 and has been taking b12 injections for 1 month. She had 6 wks of alternate days now has 2 days in between. We have noticed the improvement in her and can recognise when she needs a jab. We are lucky in that we are able to administer as required. We have been advised though that you can use a spray in between injections not as effective but can be taken up to 3 times a day. I have ordered the spray online and waiting for delivery. Hope this helps.

[Me2801 in reply to sallyball76]

Thanks - hope your daughter continues to improve. I'm confused as was hoping for further improvement before they cut back as the past few weeks her tinnutus has improved a lot.

[Hidden in reply to Me2801]

You could try using patches. If her tinnitus is improving then I quite understand you want to keep going.

[Hidden]

and hopefully her Vit D is ok.