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Starting to self inject! All advice appreciated! :)

J1712 profile image
8 Replies

Hi,

After a long, disastrous road, my mum is now at the stage of beginning to self inject. Obviously she feels horrendous so we are looking for some advice of how you might suggest we go about starting?

Should we inject once a day for 2 weeks? Then space them out? Or should we try once a week?

All comments welcome! TIA

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J1712 profile image
J1712
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8 Replies
Cobalamin4Life profile image
Cobalamin4Life

Hi, I am glad your mom is on the road to recovery. :) I know how difficult it can be to get to this point. So I'm breathing a sigh of relief for you as well.

There are quite a few very helpful Admins and Forum support members who can advise you better than I can. If you have the answers to these questions ready for them it will be helpful.

Has your mom been diagnosed with PA?

What is the extent of her symptoms?

Are her symptoms neurological?

How long has she had the symptoms?

What doctors has she consulted regarding her condition and what have they advised?

Are you in the UK or elsewhere? Guidelines vary as do the type of b12 that is available. In the UK, hydroxycobalamin is available and is longer acting. In the US, cyanocobalamin is the standard form used and is shorter acting.

And last but not least, what were her b12, folate and iron levels and any other blood test results? (please list the values of her results with units and the normal ranges)

All the best!

J1712 profile image
J1712 in reply to Cobalamin4Life

We've bought methylcolbalamin. We're in the U.K. Not going to lie :) but we have no idea about levels/numbers. All we've ever been told is that she has pernicious anemia and get injections every 3 months. She was told this just over a year ago now. Symptoms are extreme fatigue, confusion, memory loss, loss of taste, IBS!

wedgewood profile image
wedgewood in reply to Cobalamin4Life

I would inject every other day until improvement starts to appear . Then experiment with say once a week . You don't have to worry about overdosing . It's not possible. As for the IBS symptoms , that are due to the low or no stomach acid that PA patients get ( hypochlorhydria / achlorhydria ) try Symprove a very good probiotic ( expensive but effective) I have recently found Betaine HCL capsules with pepsin and Gentian Bitters in addition to be a big help with digesting protein . I wish you and your mum all the very best .

wedgewood profile image
wedgewood

A good probiotic that is very cheap is home made organic raw sauerkraut ! Eat RAW . Do not heat at all . Also obtainable in health food shops and online .

Penni profile image
Penni

Rather than buy your b12 ampules ask your GP about getting them on prescription. My GP is fine with me self injecting as long as I only get my b12 from them. For things like needles etc a lot of us on the site use medisave. THEY STOCK EVERYTHING and is good price, for disposable of sharps boxes either talk to your GP or local council.

Good Luck

clivealive profile image
clivealiveForum Support

Hi J1712 as Cobalamin4Life says getting your Mum's Folate level checked is important as this and the b12 you are injecting helps her iron to make red blood cells among other functions. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

FKtheNHS17 profile image
FKtheNHS17

I take methylcobalamin and folic acid 1,000 mcg in liquid form under my tongue once a week. 1 ActiveIron tablet (from boots) every day and then inject every 6 weeks.

P.s for IBS try organic raw apple cider vinegar from supermarket. Has to contain 'mother' mix some with lukewarm water and drink. This acts as stomach acid and i have done it on and off for 3 months. My IBS has pretty much disappeared !!!

Polaris profile image
Polaris

Lots of good advice here already J1712 🤗

I'd just add that I've been self injecting Hydroxocobalamin, every other day for nearly four months with ever improving results. (See Dutch pinned posts on the importance of early and adequate treatment (r/h side of the forum).

As an older person with diminishing hydrochloric acid, I found myself unable to absorb essential nutrients as well as B12, so I also supplement every few days with 'Gentle Iron' (contains folic acid) as well as multicomplex B vitamins - best not to overdo either though).

Like wedgewood, I find organic sauerkraut a massive aid to digestion and long standing gastritis, IBS, reflux, etc. By coincidence, I'm also trying out Betaine HCL, Pepsin with Gentian Bitters to, hopefully, help with digestion of protein - I found Vogel's Centaurium (another herbal member of the Gentian family) and Swedish Bitters excellent herbal remedies for reflux and IBS over the years.

Hope all goes well for you and your mum

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