Every other day until no further improvement

[Nackapan]

Reading through the posts I still do not understand that if b12 Injected stays in your system for so long why are they needed so often ? Also when I stop the every other day it seems such a big jump to wait 2 months? I gather so many have a problem with GPS that I'm worried now to ask to give from every other day to a week and so on so as to monitor what frequency will work for me in the future. There was a post about your body regulating the B12 in your blood so that if you don't do it properly the levels will drop very quickey.

The guidelines do say though every other day then every 2 months with nothing in between?

[clivealive Forum Support]

Hi Nackapan the object of the loading doses is to "flood" the bloodstream with so much B12 that some will get into the cells and get working on repairing the damage done by the deficiency.

The until there is no further improvement bit is not say until all symptoms have been "healed" or "gone away" but until the symptoms you do have have stopped getting any better and only you will know when that point is reached. That's when you go onto "maintenance" shots of two or three months.

I hope this helps and wish you well. Goodnight.

[Nackapan in reply to clivealive]

Morning.

Okay thank you. So the flooding is needed to get into the cells. That makes sense. Yes I'm not there yet. I suppose my concern if I get it wrong and stop the present regime i may have a fight of getting more again from surgery.

My husband is clearer at present to definitely carry on every other day. Although very slow I only have to look back in my diary a month to see they are doing some healing.

Perhaps a guide will be when I'm able to drive to the surgery (only a mile) and cook a meal!

The sun is out and deep frost. Hoping for a better day. Enjoy your Sunday

[Ajane in reply to Nackapan]

Bearing in mind how poorly you have been, I wouldn’t be even thinking about reducing every other day injections until you are significantly better. That could be a very long time unfortunately! I have been SI every other day for a year now and have only just reached the point where I can live a normal life as long as I pace myself. Every time I have tried to reduce the injections in the past year, my symptoms have returned.

I’m really pleased you are slowly improving 😊. Take care.

[Nackapan in reply to Ajane]

Thank you for your reply. I'm glad you are last, with pacing have got your life back.

Yes I will carry on as I know I've a long way to go yet. On the positive after a day long headache which I thought were behind me a shift happened in my eyesight. I could see through my old prescription glasses! I tried these when very poorly thinking they might be more comfortable( struggled with next pair ) but I couldn't see through them at all. So after a horrid day that cheered me. I was just getting concerned with needingredients so many injections and the post I read about your body regulating the 'flood' so if you decreased at too long a gap you would be defient again with symptoms back. I'm keeping my head down as there is a fear the g.p will suddenly stop them.

Just didn't realise how long and how awful people struggle with this.

I wish you well

[Annnon58 in reply to Nackapan]

My husbands GP stopped alternative day injections I’d fought so hard for after 6 weeks , I had an unpleasant telephone “ argument “ with him . I decided to stop fighting docs as too stressful and from help here ; ordered b12 ampules : syringes and needles and never looked back . I dread to think what state he’d be in now without SI , his quality of life was non existent but now he’s much better but still a long way to go . All the best , TC . Ps my advice is order your supplies now so there isn’t a gap in treatment which will set your recovery back .

[Nackapan in reply to Annnon58]

Yes it is horrid to think the surgery could just stop the injections.I am making slow improvements. I would get them 2 monthly . I haven't even dared approach a doctor over the ferritin level.I read that low levels can give you a buzzy head. Also best to keep levels around 70-80. Haven't asked doctor incase he/she thinhs the alternate days should stop. It was 61ug/L a month ago! Now 39. I asked a pharmacist after today's injection. He said 200mg of ferrous phosphate daily. My multivitamin only has 14mg.or I may take spatone. I'm reluctant to self inject and buy supplies. Fear I think. If they were subcutaneous injections and prescribed I would be fine. Thanks you for sound advice as I should perhaps get some in if the worse happens. Shouldn't be like this. What supplier do you use if you are allowed to tell me on this ?

[Annnon58 in reply to Nackapan]

Yes it’s fine to answer in here as it’s only a vitamin , I use Versandapo in Germany for b12 , they are completely safe , equivalent to UK Boots chemist . I use Medicare for syringes , needles , yes you can order tiny thin needle for sub cut , others on here could send links . I hope your doctor doesn’t stop your alternative day jabs , but it’s best to be prepared . There are you tube videos to help with SI . I was reluctant also as I was completely needle phobic , but seeing my husband so Ill , I knew I had to try , now it’s just routine , so glad as he has improved so much . All the best .

[Nackapan in reply to Annnon58]

Thank you. All very new as used to prescription or surgery. As you say a vitamin. Can't be too careful though as injecting!

So glad your husband has improved so much with your care.

Yes when needs must. My husband injects ×4 a day but a 'pen' now as subcutaneous for type 1 diabetes. He had a squeamish start when it was syringes.

Yesterday's b12 injection brought on horrible symptoms p.m so I know I need to carry on with every other day at present. I'm also going to take ferrous phosphate as pharmacist said safe. My ferriton levels have to my knowledge never dropped or been that low. I've read can cause the buzzing! Obviously body working hard on repairs (fingers crossed) I contacted PALS at the hospital I attended through a+e last October. I presented with classic neurological symptoms for B12 defiency. I was told I'd had a panic attack!!! I was thankful for cT scan to rule out a bleed from fall. I said it wasn't a complaint , I didn't want to pick over my case but an awareness that it should not have been missed. My treatment was delayed. Like you I've had alot of dealings with doctors ect trying to get the right treatment and care for 3 family members. One of the reasons I got 'burnt out' I think. I've also asked if a B12 test csn be included on routine blood tests as the first ever one I had.

Hope you have a good day. Thanks for info.

[Nackapan in reply to Nackapan]

Ferrous sulfate 200mg (corrrection)