When do you reduce frequency of SI?

[MrsTuft]

Hi. I was surviving on NHS injections every 6 weeks but got really sick follow major surgery (one of the anaesthetics lowers B12) and then high dose Nitrofuratonin (which decimates B12!). I've always had neuro sympoms (foot drop/balance) but was unable to walk I was so bad. I've been SI every day 1500 Pascoe Hydroxo for a year now and I'm significantly better - just a smidge of numbness in my right knee and still tired. Do I just keep going 'as is', or should I try reducing? Thank you! Liz.

[Hedgehog235]

Hi, we are all different when it comes to SI frequency, so I can only speak to my own experience.

For context, my PA was identified neither particularly early nor late - I was quite anemic, and had significant parasthesia and mild weakness in my left side, but had no central nervous system symptoms. My symptoms are now about 98% better.

I’ve been self injecting rotexmedica hydroxocobalamin every other day for two years and nine months. My left sided weakness and tingling comes back with a vengeance if I even try and drop down from say every 48 hours to every 52, and it takes a week or so to fully get back to what’s now normal for me.

So I am definitely in the boat of needing to SI EOD indefinitely, very possibly for the rest of my life. Others will be different! You will have to experiment and see what works best for you.

[MrsTuft in reply to Hedgehog235]

I’ll leave it a bit until I’m 100% and then try EOD. Thanks for replying.

[am111 in reply to MrsTuft]

I've found that hydroxocobalamin is much more habit-forming than Methylcobalamin and methylB12 is more addictive than cyanocobalamin, so you can try switching to methylcobalamin first and then to cyan. Remember, however, that cyanocobalamin is only absorbed about 1/3rd on a 1mg dose and even lesser on 1.5mg dose, so you may need a much higher dose of cyanocobalamin when/if you switch...

[Technoid in reply to am111]

B12 is not physically addictive in any form.

[am111 in reply to Technoid]

it may not be physically addictive in the same way as drugs, but one will feel the effects of low b12 as soon as one reduces the dose, as the body gets used to a higher level of b12. The cyan form leads to much less variation in serum b12 levels compared to methyl and hydroxy forms, hence easier to reduce is my experience, although all forms of supplementation have to be reduced gradually only.

[Technoid in reply to am111]

No, B12 is not addictive in any common-sense understanding of the word "addictive". A person without PA, but who had a B12 deficiency, underwent high intensity treatment, but who now has sufficient B12 reserves can go from twice weekly B12 injections to almost zero B12 injections with no ill effects as long as they continue to consume and absorb a sufficient maintenance dose of B12 from diet or supplements. I know this because it is close enough to what I did.

Patients with PA or B12 absorption problems need to be a lot more cautious about reducing injection dosage frequency since, despite high serum levels, they do not seem to have as much available/usable B12 as healthy individuals. Partly this may be due to the broken B12 recycling system but other factors (not yet well understood) may be involved. But this is again nothing to do with addiction. B12 is a life-essential vitamin without which the body cannot survive. To describe the body as being addicted to a substance that is required for life is a complete misuse of the term.

A person with adequate B12 will not get a drug-like "high" or any other "addictive" positive effects from a B12 injection beyond placebo.

If you have PA and you reduce treatment frequency below what you need, you will certainly quickly feel the effects but for someone without absorption issues, who has regained adequate B12 stores and whose neurological symptoms are treated, it is possible to reduce treatment frequency to maintenance without ill effects. It makes sense to do this only when B12, MMA and Homocysteine are in a good range and remaining symptoms no longer seem to be affected by B12 injections.

[am111 in reply to Technoid]

how long did you take twice-weekly injections and what was the form of them and the dose? It takes time for the body to get adjusted to a particular B12 level in the body, but I agree that people who have a functioning re-absorption from the gut will have an easier time reducing the injections.

What I have observed with me is that ANY frequency is fine, as long as it is not changed. For instance, I was at 100mcg/day IM injection and was fine, but then reduced gradually to 50mcg/day. Whenever I would reduce, the symptoms would be there for a week or so and then improve gradually to normal. Thus, the body certainly does adjust to the level of B12 we have been supplying.

I agree that excess B12 does not cause much problems beyond some skin rash/itching etc. and it is not addictive in that sense, but I do believe that excessive supplementation is not good, as the variation of serum B12 will be too high from day-to-day for the body to get adequate B12. There are even papers that claim this for 1000mcg/day cyanocobalamin.

[Technoid in reply to am111]

5 Months. Hydroxocobalamin 1mg. Yes with an absorption issue, people seem to need a lot more, and a lot more frequent B12 to alleviate symptoms. I dont think anyone understands quite why this is.

From my experience and what I know of B12 absorption and recycling in people without absorption issues, B12 beyond maintenance is not necessary after B12 stores have recovered and majority of neurological damage which can be healed, has been.

[am111 in reply to Technoid]

It is great if you were able to stop the injections cold-turkey. I know for many people, they aren't able to reduce from weekly injections also without the symptoms coming back. At least from my experience, by increasing the frequency, my healing rate did not improve and the body only got used to the more frequent injections. In fact, the healing rate reduced by increasing the frequency from once-a- week to EOD methylcobalamin 1mg IM. The reasoning I came up with is that there is much more variation in the serum B12 in the first two days of the injection than in one week, as the B12 level becomes more constant after a few days of the injection. Also, the variation is less with smaller doses, so <100mcg/day doesn't lead to too much variation in a day. Anyway, I think every one is different, but at least from my experience, it is not a good idea to inject more than once-a-week, at least not for a long time. The US standard treatment for PA, for instance, is daily for a week and then weekly for a month before once-a-month. They also recommend gradual reduction and once-a-week cyanocobalamin does seem to be weaned off easily.

[Technoid in reply to am111]

Yes, but in fairness, I never had PA or an absorption problem so my experience cannot generalise to most forum members. I definitely am NOT suggesting that PA patients quit injections or even reduce their injection frequency radically overnight. Very different situation. I'm just pointing out that, when all B12 systems are functioning normally and adequate B12 reserves (and recycling) are present, maintenance dosage can be quite adequate (and I had somewhat severe neuro symptoms when I first started treatment).

I know many forum members inject EOD (or even more frequently) for years. They don't seem to be harmed by it and although nobody can understand or explain fully why such a frequency is needed, there doesn't seem to be any proven harms involved and its clearly critical to their quality of life. I imagine, if these folks could reduce their frequency and avoid symptoms returning they certainly would do so.

With neurological symptoms, the treatment in Europe is twice weekly injections for 2 years or until symptoms stop improving. In the UK my understanding is its EOD injections until symptoms stop improving. There definitely seems to be a difference between the US and UK/European protocols but the difference itself doesn't tell us which is the better treatment regime

[am111 in reply to Technoid]

yes, I believe once the stores are there, maintenance dose is sufficient. However, to get to that, one needs to reduce gradually, as a sudden reduction doesn't work for many people. Also, I agree that if the frequency is kept constant, people may be fine and not harmed by the high dose beyond some skin rash/hive etc., but I think many find it very difficult to reduce without the symptoms re-appearing. I do not believe it is because their bodies need so much B12 but just that their body has gotten used to the amount injected. Also, "adequate B12" does not mean "the best", as there are degrees and the body may be able to function with a lower available B12 but not necessarily at its highest possible energy level. Again, everyone is different, but I think there are some common patterns.

[MrsTuft in reply to am111]

my understanding is that, for some people, if you can’t use the B12 via the digestive system orally, you can’t use it via the stored recirculation from the liver as part of the digestive system either, hence why you need to SI frequently. It could depend on the cause of the issue. And doctors never consider optimal when looking at nutrition - just what keeps you alive, which may leave you feeling awful!

[jade_s in reply to MrsTuft]

Well explained MrsTuft! People with PA or other absorption problems simply cannot access stores.

After 7 years of daily SI i'm sure my stores are at max. If i miss more than 1 dose i start swaying, falling over, burning, tingling, and the blind spot in my vision returns. My relative on the other hand was able to reduce quite quickly but still needs more than 3 monthly. Question is, is this an 'access to stores' difference or something else.

A topic worthy of research but alas...

[MrsTuft in reply to jade_s]

I’ve read literally everything I can get my hands on about B12D. This makes sense to me. And GPs say but one injection is enough to last you 5 years! But what if I can’t access my stores - I just can’t grab it through my digestive system at all? I think I’ve suffered with this my whole life, even before my ‘big crash’. I shall just keep SI until I feel no better than experiment with the frequency. My only worry is what happens to old people whose hands won’t do it or memory fails?

[jade_s in reply to MrsTuft]

Well said!!

Also my worry too i have no good answer. Train a younger relative to give you shots?? I'll likely be relying on my niece & nephew, they're young but already see us SI all the time lol.

[MrsTuft in reply to jade_s]

It’s definitely something to think about! I have a daughter but she is needle phobic 🤦‍♀️

[am111 in reply to MrsTuft]

Not being able to re-absorbed B12 from the gut means that there is requirement of more B12 - about 3mcg/day rather than 1mcg/day. Still, it does not explain the high levels of B12 we have been injecting. I believe the body gets used to the high levels and starts disintegrating/removing via kidneys more B12 when we inject more. When we suddenly reduce, we will feel deficiency.

In any case, if you feel fine with the daily SI, there is no need to reduce, although I do feel that if I reduce and stabilise at a lower level, I feel better than the stable situation at the higher level, as the body is not made for such high levels of B12 in the blood. Again, please continue to do what works for your body.

Also, you cannot reduce from daily to every other day etc. in one go. You have to reduce the dose i.e. from 1mg/day to 0.9mg/day will take couple of weeks to stabilise, from there, go to 0.8/day etc.

[MrsTuft in reply to am111]

Whatever works for you. I don’t entirely agree. Good call to reduce v v slowly if attempted.

[Technoid in reply to am111]

am111 " When we suddenly reduce, we will feel deficiency."

It's an interesting theory but it doesn't fit the facts of how abruptly I reduced my twice weekly frequency to monthly (overnight) and then to maintenance without experiencing any return of deficiency symptoms. Not something to be recommended if you have PA or absorption issues but since it didnt do me any harm clearly its not universally applicable.

I do agree with you in that I cannot see how the inability to mobilize stored B12 stores entirely explains such an exponentially higher requirement, but if anyone will throw some papers at me, I'm always happy to learn.

[am111 in reply to Technoid]

I think it is an interplay between the B12 removal process and the B12 supply rate. When we stop, the body will also try to adjust to the lower levels; if the rate at which the body adjusts to the lower level is higher than the rate at which B12 supplied by the liver goes down, we will feel ok, else we will feel the deficiency. It is a very complex process that may be affected by many factors and certainly not understood fully, hence we have to go by our symptoms. I think for most people, stopping cold-turkey does not work, especially if they have been injecting at high frequencies and for some time.

[Technoid in reply to am111]

I agree that its complex. I agree we should go by symptoms. I agree that those with PA or absorption issues should phase down slowly. If you have PA or another incurable absorption problem, the treatment is injections for life, although required injection frequency may vary.

The rest is speculation and is clearly not universally applicable since I was able to phase down overnight from several months of twice weekly to monthly and then to maintenance without ill effects , which is exactly what I expected given my understanding of how it would work when the body has sufficient B12 and can mobilize and recycle stores.

I strongly disagree with your blanket statement:

"you cannot reduce from daily to every other day etc. in one go".

Maybe that didnt work for you. Doesnt mean it won't work for someone else. Be careful of universals because, as you said yourself, everyone is different.