Patches: Hi, has anybody had... - Pernicious Anaemi...

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Patches

Debwest profile image
8 Replies

Hi, has anybody had experience with b12patches? I have been using them but not sure whether they are as good as injections. I’ve just had my 6 injection course and not sure whether to self inject from here between doses or if the patch would be good enough? I’ve got neurological symptoms and they’ve improved with the injections. I don’t want to go backwards!! Anybody have experience of this? Thanks

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Debwest profile image
Debwest
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8 Replies
Rheadster72 profile image
Rheadster72

I've not had experience of patches but did try sublingual methylcobalamin in between NHS injections. I didn't feel they were doing enough so started SI. Is It that you would rather not self-inject? I can totally understand that. Hope you find a solution. If you have neuro symptoms the guidance is to inject every other day until no further improvement of symptoms. I have neuro but didn't fancy every other day so I do twice a week. Only been a month of that and so far things feel worse but understand that can be the case so soldiering on...

Debwest profile image
Debwest in reply toRheadster72

I don’t mind self Injecting but I have some patches still and thought it might be as good. Plus I don’t really know where to start with injecting at home...

Rheadster72 profile image
Rheadster72 in reply toDebwest

Plenty of advice on here regarding SI. I was a total novice 3 months ago but now fairly comfortable with it... well as comfortable as you can be sticking a needle in your thigh!

Lisahelen profile image
Lisahelen

when gps refused to acknowledge that the symptoms i had, could have been actually b12d related. like far too many people, i was given basic loading then left in the middle of a mine field with no way out. Thats when you know that you have to find something, anything which might get the same relief as those initial injections did.

So i jumped into the hunt for trying to find out as much as i could. This site and the admin were and continue to be a literal life saver for many of us. But again like most newbies i was nervous of going against my gps wishes and treatment, but i had to do something!

I got myself some drops from h&b they staved off the yawns but not a lot else. Then looked at the patches, realised that to anything they had to be really the highest dose i could get. Bought 5000+ other b’s, what a relief to actually be able to sleep! They actually got rid of the persistant pins and needles at least. Initially i was using them virtually every other day then gradually cut down. Use them now and again, more for an overnight top up now.

But i have progressed to self injecting, it has in all honesty, got to be the best way of getting any real repair work done! By si, my level of folate has dropped a bit so now taking some folic to compensate for that.

So for me the patches work but they dont for everyone, like much of the various alternatives to si. If you have them already then use them but wouldnt necessarily say they will do a huge amount of healing. With neuro symptoms you probably need to consider bringing out the big guns!

Gambit62 profile image
Gambit62Administrator

If you are in the UK then the correct treatment would be to continue loading shots until your symptoms stop improving and then have maintenance shots every 2 months.

BCSH guidelines recommend reviewing the loading shots after 3 weeks as a practical review point

suggest that you refer your GP to the BCSH guidelines which they can access through the BNF but can also be accessed here

onlinelibrary.wiley.com/doi...

The NICE guidelines also include two regimes.

Debwest profile image
Debwest in reply toGambit62

Thanks

Frodo profile image
Frodo

Patches did not work for me.

Ajane profile image
Ajane

5000mcg patches worn continually help me, but injections are better.

All the best with your recovery 😊

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