Does it matter changing from hydroxoB... - Pernicious Anaemi...

Pernicious Anaemia Society
22,690 members16,008 posts

Does it matter changing from hydroxoB12 to cynoB22

clairemallen123
clairemallen123

Hi again

Just need a little advise I ordered hydroxocolabalamin and when it arrived I had stupidly ordered cynocolabalamin

I’ve given myself an injection of cynocolabalamin because I was so desperate having waited for it arrive

Will it have the same effect as the hydroxo version ?

Thanks again for your time

12 Replies
oldestnewest
Gambit62
Gambit62Administrator

personally I can't say I really notice any difference between hydroxo and cyano.

some report finding cyano works better for them than hydroxo

clivealive
clivealiveForum Support

I don't think it matters at all except you may need to inject the cyano more frequently as the prescription schedule is every four weeks. I currently have mine every three weeks.

Foggyme
FoggymeAdministrator

Hi clairemallen123. Following on from what others say, Cyanocobalamin is contraindicated for anyone suffering from Leber's Optic Neuropathy.

👍

Sita505USA
Sita505USA in reply to Foggyme

How common is Lieber’s Neuropathy? I have visual blurring and floaters which I had before beginning SI of Cyanocobalamin and which has gotten worse. My doctor finally diagnosed cataracts. I cannot help but wonder if something else is going on.

Thanks, Sita

Foggyme
FoggymeAdministrator in reply to Sita505USA

Hi Sita505USA.

Lieber's is classes as a rare disease, it's hereditary and caused by a gene mutation. Lieber's is therefore more likely if you have a family member who has it...or who has visual problems that are misdiagnosed or undiagnosed.

It's also possible to have another form of optic neuritis that's not hereditary. Nobody knows why this occurs but it's thought to be caused when the immune system mistakenly targets the substance covering your optic nerve (myelin), resulting in inflammation and damage to the myelin. (not sure if cyanocobalamin is contraindicated here but think I'd err on the side of caution, if in doubt).

Here's what the US National Library of Medicine says about the prevalence of Leber's Optic Neuritis:

The prevalence of LHON in most populations is unknown. It affects 1 in 30,000 to 50,000 people in northeast England and Finland.

Here's a link to more information about Leber's:

ghr.nlm.nih.gov/condition/l...

Here's more information about the diagnosis of Leber's:

rarediseases.info.nih.gov/d...

And something about optic neuritis (in general, not Leber's or hereditary):

mayoclinic.org/diseases-con...

Have you seen an opthomologist about your cataracts? This would be a usual referral route for those with cataracts, in the UK.

An opthomologist would also be the specialist to see if you suspect (or want to rule out) Leber's (or optic neuritis). My understanding is that Leber’s can be quite difficult to diagnose and would certainly require specialist input.

Hope this helps.

Good luck

👍

Sita505USA
Sita505USA in reply to Foggyme

Thanks so much, Froggyme!

I have seen two optometrists and an opthamologist about the cataracts. I see him again this week, will talk to him about Lebers.

Foggyme
FoggymeAdministrator in reply to Sita505USA

Good idea Sita505USA. Probably not an issue but worth checking. If nothing else, it will put your mind at rest...especially because cyanocobalamin is involved.

Good luck...hope all goes well 👍

Sita505USA
Sita505USA in reply to Foggyme

Yes, I am very stressed out by this. Thanks for your support!

Thank you so much you have put my mind at rest and I can sleep well

Hi,

You need monthly injections of cyanocobalamin.

Hydroxocobalamin lasts up to 3 months.

You may find that you need more frequent injections, you may not. Keep an eye on your symptoms and be prepared to inject earlier if you feel them returning.

Thank you

Your support is incredible

I’m one of the many who had to take control myself after GP reluctance

18 months ago my b12 was on the very bottom of normal range and with so many of the classic signs (including neurological) and I had to fight

GP gave in due to my persistence and gave me loading doses

The transformation was incredible but she wouldn’t continue injections. So for 18 months I’ve been SI

I have told my GP she said she’s glad I told her but she’s not really happy about it

As with so many she thinks I’m just a neorotic middle aged woman with health anxiety and she thinks the b12 is a placebo!

I plan to go back to her to convince her it’s not but so far have concentrated on myself

I wouldn’t have been able to do any of this without the confidence you have all given me

You may also like...