Hydroxo v’s Cyano (UK)

[Cinders70]

Apologies if this post has come up twice. I tried to post last night and the post appears ‘stuck’.

This is the short version.

I spoke to my GP on the phone yesterday and basically begged her to increase the frequency of my injections to every four weeks.

She went away to speak to a partner, and I got a text back saying they had agreed, but have changed my injections from hydroxo to Cyano cobalamin.

I believe this doesn’t last as long in the body?

Isn’t this just going to cause the same issues?

I occasionally self inject hydroxocobalamin (gp not aware of this at present). Will this cause issues?

As a scientist, I’m annoyed that both the drug AND the frequency have been changed at the same time.

Not sure what to do. Should I just go with it and see what happens?

[fbirder]

I think I can guess why they've done this.

Hydroxocobalamin is only licensed for administration every 2 to three months, while cyanocobalamin is licensed for administration every month. The difference in licensing is because cyanocobalamin is supposed to be retained for a shorter period (although I'm not sure about that).

I would accept the change and see how it goes. Try not to self inject unless you really need to, for a few months at least.

[Nackapan]

Its up to you but I would personally ask to be given what you are used to having. Hydroxocobalamin

Otherwise not s proper trial. I pushed. They can prescribe in 'the best interests of their patient on an individual basis

off licence used alot of the time.

[Cinders70 in reply to Nackapan]

@Nackapan. Could you tell me where I can find it written about being able to prescribe off licence ‘if in the best interests of the patient’ please?

I looked at the BNF and it’s just listed as @fbirder says.

I’m at a point where I can’t risk taking any more time off work if I crash. They keep sending me to Occ Health, who can’t do anything, and it will result in me being out in an ‘Improving Attendance’ scheme, which I don’t think would be fair! Or help in any way whatsoever....

[Nackapan in reply to Cinders70]

A doctor told me on the phone.

So it's in their written guidance .

I like many others get b12 on prescription more frequently than whats recommended in the bnf guidelines.

Just use the term . In a patients best interest. Or discuss the work problem above .

Od just say you don't want two changes made and woukd rather stick to what you know. Ask to triak the new frequency ad toh sti havd bad symptoms and nk other diagnosis

I've pushed and reasoned. Ivd never pushed anything under their noses as egos are greater than facts I've found.

Its very frustrating. I ve always tried to work with them

Only when I was refused an injection did I sit quietly (shaking) refusing to move until I was listened to. I was very ill. I asked my gp to read the bnf guidelines on every other day until no more improvement .

What were my other options. There wernt any. (Info from this forum)

All i know is it can be done but it's the G.ps decision/discretion. On the need of the patient.

I had one gp in the practice trying to block everything. At that point and covid I with the help on here bought some supplies.

I then out of nowhere had a phone call from my Gp santioning my request .

Offer to be taught to self inject and get a prescription?? To free up nurse time.

Anyway I hope you do get it sorted.

[Cinders70 in reply to Nackapan]

Thank you @Nackapan

I’m going to try and talk to them again next week.

I’m also trying to get them to agree to me self injecting, it’s such as waste of everyone’s time me having to go to the surgery, especially when I can’t get an appointment at the right time, and am quite willing and capable of doing my own.

Thanks for your time and info. X

[fbirder in reply to Cinders70]

Here is what the government says about off-label prescribing. gov.uk/drug-safety-update/o...

Summary:

Advice for prescribers says you should:

be satisfied that an alternative, licensed medicine would not meet the patient’s needs before prescribing an unlicensed medicine

be satisfied that such use would better serve the patient’s needs than an appropriately licensed alternative before prescribing a medicine off-label,

Before prescribing an unlicensed medicine or using a medicine off-label you should:

be satisfied that there is a sufficient evidence base and/or experience of using the medicine to show its safety and efficacy

take responsibility for prescribing the medicine and for overseeing the patient’s care, including monitoring and follow-up

record the medicine prescribed and, where common practice is not being followed, the reasons for prescribing this medicine; you may wish to record that you have discussed the issue with the patient

Best practice for communication includes:

you give patients, or those authorising treatment on their behalf, sufficient information about the proposed treatment, including known serious or common adverse reactions, to enable them to make an informed decision

where current practice supports the use of a medicine outside the terms of its licence, it may not be necessary to draw attention to the licence when seeking consent. However, it is good practice to give as much information as patients or carers require or which they may see as relevant

you explain the reasons for prescribing a medicine off-label or prescribing an unlicensed medicine where there is little evidence to support its use, or where the use of a medicine is innovative

So a doctor can, indeed should, prescribe off-label if they think it will be in the patient's best interests and if they are satisfied that it will be safe.

The best way of telling if it is in the patient's interest is to try it for a trial period.

There is no evidence that high doses of intramuscular B12 is harmful - stichtingb12tekort.nl/engli...

When discussing this with a GP I would recommend using the term 'off-label'. That seems to be the preferred term for using a license drug outwith the terms of its license. Rather than the term 'unlicensed medicine'.

I showed my GP my symptom diary (well, spreadsheet) showing how my fatigue got worse about 10 days after an injection. I asked him to prescribe off-label once a week. He compromised on once a fortnight.

[Cinders70 in reply to fbirder]

Thanks so much fbirder , that all really helpful stuff. Many thanks for taking the time.

[Bellabab]

BNF says "National funding/access decisions

NHS restrictions

Cyanocobalamin solution and Cytamen® injection are not prescribable in NHS primary care.

[Litatamon]

If this helps you Cinders70, I have taken both hydroxocobalamin and cyanocobalamin (and methylcobalamin). First, I don't see any issue with you injecting with one while getting another type at the doctor's office. There are posters on here that use two forms, just can't remember their names to get you in contact.

I did feel that hydroxocobalamin definitely stayed longer in my system. I also felt that it had more of a delayed reaction, meaning that I felt a surge on day two or three - never immediately. The only reason I didn't stay on it was because suddenly I was constipated and it affected my skin. I was too vain to wait that out and see. Though I did push through to give it a proper go. Plus, this might have been a coincidence but I had a very rapid weight gain in a short amount of time while taking it.

With cyanocobalamin, I feel the surge pretty well immediately. And when I went back on it my skin cleared up immediately, was no longer constipated and lost some of the weight.

Obviously this is just my take, as every body is different and can obviously react differently. Plus there are some that feel absolutely no difference between the types of b12.

All the best to you.