pain from b12

[Perniciousgirl]

I know that b12 should help with neuropathic pain but I’ve been injecting 0.25ml every 5 days for my pernicious anemia and to get my homocysteine down but I’ve noticed such an in increase in body pain ( muscles aches and joints). Has anyone experienced this ?

[wedgewood]

When you say “ taking “ do you mean injecting or taking orally ?

[Perniciousgirl in reply to wedgewood]

Sorry for the misunderstanding. I meant injecting.

[wedgewood in reply to wedgewood]

As you are injecting, i assume that you have pernicious anaemia/ Autoimmune gastritis.

I asked because it is possible to take liquid B12 orally , often taken under the tongue .

The usual dosage here in U.K. is 1mg taken from a 1ml single ampoule . After an initial loading dose of 6 injections over 2 weeks , injections of sufficient regularity to keep symptoms at bay are needed . This will vary enormously from patient to patient. ( this is not known why )

I have been on this forum daily for over 10 years and I can tell you that it is very common for patients symptoms to get worse before they get better , when they commence injections, and the term “ reversing out “ has been coined for this . You could increase your dosage to every other day , for as long as it takes . Do not despair. I’m sure that you will get messages from other members to reassure you on this .

In U.K. the usual form of B12 injected is Hydroxocobalamin. But other forms eg Cynocobalamin or Methylcobalamin would also work . It is a good idea to take a B12 complex tablet as well daily or even just a modest folic acid tablet ( B9) like taken during pregnancy. The B vitamins all work synergistically.

This will reduce your homocysteine!

Also have a good balanced diet . Wishing you a good recovery

Best wishes .

[Perniciousgirl]

Thank you for your detailed reply and I’m relieved to hear that the pain is related and it gets worse before getting better, as my dr said it does not cause symptoms. I am battling but will keep going with it.

Yes I have PA and I take methylcobalimin injects. The injections have been 25mg per ml so at the quantity I was taking it was basically just over 6mg per week😳 which seems like too much compared to what you have said is the loading dose in the uk.

I also take active folate (b9) and I have had 2 TIA’s due to my hyperhomocysteinemia which was partly from PA / AG being undiagnosed for so long and because of some other genetic issues. My diet is super clean and according to a dietician the best for hyperhomocysteinemia, thankfully

I know you mentioned that maintenance dose is dependent on each person but can you give me an idea of what most take ? I have a appt with a specialists endocrinologist who deals with this but is only in May.

Thank you again, I really appreciate it. At least I have a better understanding now.

[wedgewood in reply to Perniciousgirl]

It’s really hard to know how regularly most patients need to inject . We did a survey on this forum and the result was that monthly was the most popular , then weekly , then I’m not sure . But I know someone who needs to inject daily .I inject weekly . But bear in mind that people on this forum are usually those who are not able to keep well on the bog standard treatment that the NHS gives which is once every 3 months , or if you are lucky , once every 2 months . For some people that is adequate, and they don’t feel the need to join the PAS .

You will find out how often you need to inject by trial and error, after you have reached the point where your symptoms have gone ( sometimes one is left with a symptom which is irreversible because treatment has been delayed too long , or was inadequate .(happened to me)

. This condition is very poorly researched ,and most doctors are very ignorant about it . We are very much on our own when it comes to treatment , if the bog standard treatment is insufficient . B12 injectables are only obtainable on prescription here in U.K. We have to get our supplies for self- injection from excellent German Online pharmacies . Only a few will deliver to U.K. since Brexit , because of the extra red tape and paperwork involved in sending to U.K. No prescription required in Germany .

Take comfort in the fact that you cannot overdose on B12 , unlike many other vitamins and minerals . That’s good to know .

Anyhow , you have found us which is great . You will always find advice here . We are your new friends .

[Perniciousgirl in reply to wedgewood]

Thanks so much for the additional info. I will bear that in mind that most on the forum, I guess like myself, do not thrive on bog standard treatment and that it is a trail and error.

I’m very That is really not acceptable that the NHS only provided every 3 months and you have to do your best to get it brought in. I’m sorry to hear that. 😔

My AG & PA was undiagnosed for such a long time because of my other conditions masking the symptoms. I do hope that with regular injections some of the damage can heal and that this acute pain starts to improve soon enough

Thank you again, I am very relieved to have found you all here and appreciate the advice. 😊

[tomdickharry in reply to Perniciousgirl]

I don't understand your figures, please clarify. 0.25ml every 5 days? 25mg per ml? 6mg per week?

A milligram is 1000 micrograms so that's a huge amount, and how do you get 0.25ml in an injection?

[Perniciousgirl in reply to tomdickharry]

It was compounded for me. It’s very concentrated. 25mg of methylcobalamin / ml ) vile

1mg = 0.04ml ( with that concentration)

0.25ml (in 1ml syringe ) once per week

25mg x 0.25ml = 6.25mg, so i should have rounded off to 6 not 7mg.

Way too much according to what others seem to be taking.

[tomdickharry in reply to Perniciousgirl]

Thankyou. That is a really huge amount. I'm surprised that you don't have side effects, even insomnia, taking that much methylcobalamin all in one go.

[Perniciousgirl in reply to tomdickharry]

yip. I did have lots of side effects- Pain, awful shocks, and the insomnia has been exhausting but the dr argued with me and told me it’s not the b12, hence I reached out here and I’m glad I did.

[tomdickharry in reply to Perniciousgirl]

I do think you should reduce your amounts a good bit, maybe trying hydroxocobalamin instead of methyl, or at least take it early morning to lessen insomnia. Good luck.

[Perniciousgirl in reply to tomdickharry]

I will most certainly reduce it drastically and will look at getting Hydroxocobalamin from the dr. Thank you.

[DiNL]

Dear Perniciousgirl,

I’m also South African, see u are located there but I live in Netherlands now. You are very forunate to find a doctor who is prescribing such frequent injections for you. The only problem is that I have no experience with methylcobalmin injections. We use hydrocobalamin here in Northern Europe and in southern Europe they use Cyanocobalamin.

As far as I know, methyl was developed for neuropathy related to diabetes. And the suggested dosages are therefore not clear for PA patients. But just like hydro or cyano needs folic acid to work properly, I have also read that for methyl to work properly it needs something called adenosylcobalamin. Has your doctor mentioned this?

Wishing you well in your recovery.

[Perniciousgirl in reply to DiNL]

Hi there. Nice to meet a fellow South African. Yes my dr’s are good at prescribing what’s needed, I guess because it’s private health care.

So my specialist endocrinologist suggested methylcobalamin for me because I have a few other issues and my liver struggles sometimes so I do better with more natural forms. Cyancobalamin is the synthetic form. I am unsure why Hydroxocobalamin wasn’t suggested as I read now that it is also a natural form and has higher retention in the body. I will ask him about that when I next see him. I have just read about adenosylcobalamin so thank you so much for bringing that to my attention. Much appreciated. I’m going to speak to the compound pharmacy to see if they can put together a mix in injectable form, and then will ask the dr about a script for it. Fingers crossed.

Thank you for the well wishes.

Ps. I visited the Netherlands for the first time last year and loved it.

[WiscGuy]

As was mentioned, very little high-quality research has been conducted on treatment of damage resulting from B12 deficiency. Nerve demyelination is the most frequently mentioned damage, but as one doctor stated in a recent video presentation, "What is affected by B12 deficiency? Everything." That involves all nervous systems (central, peripheral, and autonomic), and the brain often has wide-ranging damage, resulting in pain (headache), psychiatric symptoms, and limitations to any of all the remaining brain functions. Also, based on my own personal experience, the entire endocrine system can sustain damage, or any of the components of the endocrine system. All of the damage has usually occurred, as you mention, over a long period of time, years or even decades. All of the damage can heal to some extent if in the presence of sufficient B12, though the healing can take years. One of the unknowns is how much B12 is sufficient for optimal healing, and how much B12 needs to be injected, and how often, in order to achieve the optimal internal levels of B12, which will result in the most healing, most quickly. Healing tissues, especially nerves, can function oddly as they are healing, and thus can result in pain, often sporadic, though as mentioned, these things all vary widely from person to person.

B12 is not toxic at any level, as far as is known, though there can be side effects, with the most often mentioned being acne-like conditions, which resolves when B12 injections are reduced or stopped.

These are largely the variables that B12 deficiency patients deal with. Much more rarely than is ideal, knowledgeable doctors aid the patients with related decisions. These are the factors that your doctor apparently is taking into account. Most of us have problems with doctors who have little knowledge of B12 deficiency or how to treat it, and have battled doctors in order to increase frequency of injections, each usually 1000 mcg. So the problem has been too little B12, not too much ("too much" is usually thought to not exist, since B12 is believed to not be toxic at any level). I personally would not be comfortable advising you to cut back on the treatment your doctor has recommended.

[Perniciousgirl in reply to WiscGuy]

Thanks so much for your reply. I appreciate it. I do think they have considered the fact that I have dysautonomia ( autonomic dysfunction) CNS symptoms and pretty bad peripheral damage, as well as hyperhomocysteinemia, which does not seem to be responding quickly enough to treatment. I am however, battling to function well with this level of pain which commenced at the time of the injections.

So I will have a discussion with my gp about the reasons for the high dosage and see what he thinks and wants to do, until I see the specialist endocrinologist who prescribed it, in May.

Thanks again.