Hydroxocobalamin

Hydroxocobalamin 2015-11-20 Person 4 5 0

I have injection every four weeks as neuro symptoms return before the recommended 3 monthly injections.

Hydroxocobalamin 2015-02-01 Person 5 5 0

I struggled for years to lead a normal life and was misdiagnosed with ME and dementia. These injections have given me back my life but severe fatigue and neurological symptoms still return before the next treatment is due. More frequent injections would relieve the fear of a relapse and being unable to cope again. It is difficult to understand why such vital treatment is not more readily available.

Hydroxocobalamin 2015-01-27 Person 5 5 0

I have been receiving hydroxocobalmin injections for a vitamin B12 deficiency for 10 months now. Without a doubt, the injection improves my B12 deficiency symptoms, however the current treatment regime offered by most GPs is wholly inadequate. The current guidelines are 3 monthly without neurological symptoms and 2 monthly with neurological symptoms. I would say that even after 10 months of treatment, my neurological symptoms are back within a matter of days following an injection. I would say at best that I feel the benefits for a maximum of 5 days, and yet am supposed to wait several weeks for my next injection, all the while feeling worse with each passing day. In order to manage until my next injection, I am forced to supplement with sublingual B12 and oral B12 spray. So, while the injection itself is very effective, the frequency with which it is provided prohibits me from getting much benefit from it. It is time that patients were offered treatment (ie hydroxocobalamin injections) at a frequency that means their symptoms are properly addressed and improved. Doctors need to start listening to patients, to stop insisting that one injection every 3 months is adequate and to (be allowed to) treat patients according to symptoms. This is, without a doubt, a case of when one size definitely does not fit all. Oh, and you definitely can't overdose on vitamin B12. I wish people would stop trying to tell me that you can! These injections need to be available for patients with a much greater frequency than currently. The harm done to patients by not treating them adequately is not a risk that people nowadays should have to take.

Hydroxocobalamin 2015-01-25 Person 5 5 0

In the process of asking for more B12 injections than one per three months as this has helped but is not enough to sustain a normal functioning way of life. Patience we have but sanity is wearing thin. Fingers crossed for more understanding within the NHS.

Hydroxocobalamin 2015-01-24 Person 4 5 0

I am unusual, in that I am using this to treat Trigeminal Neuralgia, not anaemia. I don't know if it is having any beneficial effects on the disease itself, but it has proved to be excellent for pain control. It takes about 2 - 3 days to kick in after an injection but then the pain level of my TN drops quite drastically. My doctor is convinced this is a placebo effect but I am about the most sceptical person you could meet and really didn't expect this to work, so no, it's not placebo. I think these injections are first rate and would not hesitate to recommend them to anyone else struggling with TN. The only downside is having to traipse along to the surgery for them. I originally had 3 weeks of loading shots and was supposed to then have bi-monthly injections but I managed to sell my GP on monthly injections because the effect of the loading shots wore off after 3 and a half weeks. I am monitoring it to see how long it lasts this time and hope to convince him to give me them as often as needed to keep the pain control going, if it proves to be less than a month. I think this is a recurring and serious problem for anyone who is on these injections - the constant battle to get them as often as you need from doctors. They treat blood test results not your symptoms. This is a very bad way of doing things. I would recommend persevering with your GP if you need the B12 - it's worth the fight.