Intermittent recovery

[Gatcombe10]

Hi,

I am writing to ask about members experience of recovery after injection treatment. I was diagnosed in the summer with B12 deficiency and had the 6 loading injections. These seem to work effectively and I was back to being a functioning human being within 3 weeks. I have just has a relapse and I am back on the alternate day regime. The recovery now seems less straight forward, after a month of injections ( administered by self application) , the fatigue seems less severe, but my mental functioning is still severely impaired and my tinnitus is reminiscent of standing by the speakers at a motorhead concert. I realise that recovery is not a straight up process, but one day I feel that things are improving and the next feels back to stage 1. My GP has run all the usual tests which have come back negative I wondered whether anybody else had an intermittent recovery and how long it has taken to get back to normal . Also once you have felt okay again, how did you decide on the frequency of injections to keep you healthy.

I have gained a lot of reassurance from this blog.

Any ideas welcome.

[Nackapan]

I've not actually got back to my 'normal'You did well to get that recovery so I'm sure it will and can happen again.

It is a rollercoaster.

Remember not everything is b12 related. You might be fighting a cold or a bit run down??

I have found symptoms worse if I try and pretend to be normal. Or if stress is around.

It's good you had your bloods done.

Good to keep monitoring folate, iron vit d and anything else youve been deficient in .

. Hope you pick Up again soon.

The frequency of injections is very individual. Its keeping one step ahead of any of the bigger symptoms returning for me For some its keeping most symptoms away.

The longest I've managed is 3 weeks. That was a mistake though and set me on catch up time each time I tried.

It was a trial of b12 tablets to get the injections further apart. (G.P)!!

I was willing to try as had been on 2 weekly for some months.

So just keep going and hopefully you will get back to where you were. Lovely to hear you had some normality back. It will return.

[Cherylclaire Forum Support]

I found it difficult to guage what worked for me as deterioration was sometimes slow and accumulative. All I knew for sure was that less injections = worse quicker and more injections = not so bad, slower.

I didn't feel anything at all from the loading dose originally, but when on the injections every three months, got so much worse that I was retested: my B12 was by then over 2000 ng/L, but my MMA was still raised. This led to a diagnosis of functional B12 deficiency, confirmed by the lab. I was started again on loading dose of 2 injections a week. After 3 months of this, I finally felt an injection ! I was getting better - everyone noticed improvements: friends, family, my GP, the nurses. Another 3 months of that frequency, and I started to deteriorate again. Disappointing.

I was then put on one injection a month- as no more improvement could be gained from that point on- and sent to a lot of consultants after that, but didn't get any answers beyond haematologist's advice to GP to reduce my injections to 1 every 2 months.

Eventually, I started self-injecting as I thought that the reason I'd not been able to continue to improve was that two injections a week could be a little short of what it took to recover. I tried every other day injections, and continued on this frequency for over two years, before reducing to every three days. I have tried further reductions without much success so far. There aren't any more consultants to see or investigations to be had.

My practice has stopped my NHS injections (then at one every 2 months) because I self inject. I haven't yet had a day without any symptoms -but they are reduced in frequency and severity and mainly manageable now I've stopped working.

We are all different. I would take it as a very promising sign that you gained so much from the loading dose - but that, for you, it finished too soon. You could not maintain those improvements. People quite often get worse before better. Highs and lows make it difficult to calculate what works, but aim for a longer-term recovery.

Records help - a daily chart listing symptoms and frequency and when injecting might give you a clearer picture over time. You may be able to work out how to pre-empt the return of symptoms, rather than be reminded to inject by their recurrence.

If you have neurological symptoms, the guidelines state that injections should be every other day until no more improvement can be gained - then one injection every 2 months. Impaired "mental functioning " (confusion/memory /cognitive problems) would qualify. Have you seen a neurologist yet ?

The usual co-existing problems are low /below-range ferritin, folate, vitamin D -so might be worth checking these are okay and not hampering recovery. Thyroid can also struggle.

Keep going !

[mcg-woo]

I agree with Nackapan. Recovery and getting the right dose can be a rollercoaster. I never received true loading doses so I believe that delayed my recovery. I continued to recover over a period of two years but now I am realizing that my weekly injections cut back to twice monthly was too soon and delayed full recovery for me. Low b12 is interesting because it comes on so gradual that one doesn’t realize it as symptoms such as chronic fatigue become a normal way of life. I had also suffered a devastating loss in my immediate family so I initially believed my medical condition was actually intense grief—depression without a previous history and the inability to get out of bed. Severe symptoms can make one feel so bad that even feeling a little better seems like a game changer. However, without receiving the most beneficial dose for an adequate length of time will rob the patient of full resolution of symptoms. That has been my experience. You are still very early in recovery. It takes a full year for the brain to recover. Give yourself time to heal and make sure you are getting the frequency of injections that you need. I have read that with neurological symptoms, one should receive weekly injections for two years. I think full recovery depends on the severity of symptoms. Recovery with severe symptoms will take longer. I recently had a relapse that was much less severe than before and it was more like a few months instead of a couple of years. Make sure your injection schedule is frequent enough for you to be symptom-free. That seems to be different based on the individual. Good luck!

[Gatcombe10 in reply to mcg-woo]

Thanks very much for taking the time to tell me your stories. It all helps with the understanding of this wretched condition.