Hydroxocobalamin - side effects

[User2020-1]

I’ve been diagnosed with PA for a year and have been self injecting at differing frequencies since May (probably had 50 injections since May 1st).

However, I seem to get awful side effects from Hydroxocobalamin (nervousness, tingling and sinusitis symptoms) - does anyone else get this?

If so, any tips on managing this?

[Nackapan]

Have you used a different form previously ?I've only ever had Hydroxocobalamin.

I've had all sorts going on but think it's more the bqw triggering nerves and healing.

The only thing it clearly triggered was tinnitus and headaches initially.

I think maybe dry skinand scalp ?

Difficult to know whats what with ongoing symptoms.

Certainly no patterns

[User2020-1 in reply to Nackapan]

I’ve not tried any other injections- will try Cyano if these side effects remain…

It’s a horrible catalogue of symptoms

[wedgewood in reply to User2020-1]

Try Cynocobalamin instead of Hydroxocobalamin. When searching for it look for B12 NOT b12 depot ( which denotes Hydroxocobalamin. It is said that you might need to inject a little more often that with Hydroxocobalamin . The reference number for Cynocobalamin ampoules is 16199707. It is cheaper than Hydroxocobalamin. This is the Panpharma brand 1mg x1ml ampoules .

[User2020-1 in reply to wedgewood]

Thanks wedgewood - I’m giving it until Thursday (8 days after subcutaneous injection with Hydroxocobalamin) to see if the side effects calm down and if not I’ll just have to use the Cyanocobalamin that I bought months ago…

Cannot believe that the more B12 I take the worse the symptoms 🤯

[wedgewood in reply to User2020-1]

Pernicious Anaemia/ B12 deficiency is a very complicated condition ( I refuse to call it a disease!) There needs to be a lot of research done . There’s nothing in it for pharmaceutical companies . They will only do research if there’s a possibility of big returns . Since B12 injections are the answer , they are not interested . Vitamins cannot be patented . PAS is doing research with the help of others . ( James Lind Alliance at the moment ) So we live in hope !

[Hamayeshguy in reply to User2020-1]

Cyano doesn't work or at least didn't work for me at all, but it looks like you have injection intolerance so you need to take timed release methycobalmain along with your injection. Megadoses of timed release methylcobalmain works and help you to raise tolerance. I take 15000 mcg and it helped me just in a matter of weeks. But its required to to take good b complex (active form seems to me is better) along with methyl folate and on and off iron pills (ferrous biglycinate chelate works great without any stomach problem). omega 3 and d3 k2 seems to me should be taken on daily basis too.

[clivealive Forum Support]

Hi User2020-1 I came out in a terrible rash when Hydroxo was first introduced in the mid 1980s having been on cyano since 1972 so went back to cyano and have been on it ever since and for nearly fifty years. You can but try....

Do you supplement with folic acid at all?

I am not a medically trained person

I wish you well

[User2020-1 in reply to clivealive]

Thanks clivealive - I take 400mcg folic acid and a B complex daily…

[25092 in reply to clivealive]

Hi clivealive, I am concerned about myself taking cyanocobalamin because some say it's bad for me but you made me feel better saying you've been on it 50 years and no problem If you don’t mind. How often do get your injection?.

[clivealive Forum Support in reply to 25092]

Well prior to the first lockdown in March 2020 I was injected into the muscle between the elbow and shoulder every month by the practice nurse at my surgery - since then however my wife has been able to do it for me in the same way as she was shown by the nurse.

Cyano is the injection of choice in many countries including the U.S.

I wish you well

[25092 in reply to clivealive]

Thank you clivealive. You mentioned you were on cyanocobalamin since 1972 were they injections or sublingual tabs or other. I ask because I am injecting 2x a month and just want to know if safe.

[clivealive Forum Support in reply to 25092]

Injections from day one every month for nearly fifty year and I'm still "clivealive" at the age of 80 and before hydroxo was introduced in the 80s (because it was "supposed"to stay in the body longer) EVERYBODY was on cyano for probably 30 years or so before me.

[25092 in reply to clivealive]

You go CliveAlive 80 years and still blessed GOD is good. You are my hero clivealive😊

[Hamayeshguy in reply to clivealive]

I tried cyano but it didn't work for me at all. Maybe some part of metabolism can work with cyano but clearly its not whole the body specially in muscles. For me methylcobalamin timed release works perfectly in muscles maybe doesn't work for other people but we have to try to find it out. but cyano didn't work at all

[MoKayD]

Early in my treatment I would get strange tingling feelings and a little bit a headache after an injection but I felt like it was my body healing. I kind of liked it when my nose or toes would tingle because I felt like it proved my body was healing. I don't get those tingles much anymore. I guess things have healed.

[User2020-1 in reply to MoKayD]

Thanks MoKayD - I’m 12 months into treatment, did you get those sensations a year on?

[MoKayD in reply to User2020-1]

Sometimes I would but after 3 years of treatment the only place that I still feel the tingles is in my toes (sometimes). I've never fully recovered the feeling in my toes.

[ForViolet]

It will be interesting to see if the cyanocobalamin form works better for you. It's the one I use but I did try the hydroxo years ago. I didn't notice any improvement over the cyano form so went back to it.

Cyano is much easier for me to get in the US.

[cthacker1]

I would assume if this is your reaction to hydroxocobalamin that your body is simply better at converting it into its bioactive forms: methyl and adeno, thereby more aggressively treating damage within your CNS. The result of this, I'm assuming, is that your neuropathy is seemingly exacerbated.