Feeling very unwell

[Clarkie477]

Hi. As people may know I have been fighting to get loading doses from my GP. I decided to self inject and gave myself the loading doses IM every second day. I gave myself 7 doses and have currently not had another one for 10 days. I was feeling like my old self but now I am rapidly going downhill and feel very ill. Surely this shouldn’t be happening after 10 days without an injection?

[Nackapan]

It can do .

It was good you had good results with the loading doses.

Either go back to those for longer or try weekly?

Thars what i had to do.

The loading doses actually made me worse. So good they Improved your symptoms.

To get back to your old self was marvelous

What regime were you hoping to do?

[Clarkie477 in reply to Nackapan]

I’m not sure. I thought the loading doses and then maybe every month. I’m not sure why the loading doses are not lasting and I’ve went downhill so quickly.

[wedgewood in reply to Clarkie477]

You need your injections more often . I need a weekly injection to keep symptoms at bay . I know the NHS does not acknowledge the fact that P.A. patients often need more injections than they will give . I know people who are fine on 3 monthly , but so many people need them much more often .

Anything from twice a day- Yes that’s the fact of the matter . I’m grateful that the self -injections are reasonably cheap . Hope that you also make sure that you are getting plenty of folate in your diet ( green leafy veg , peas etc . Taken in tablet form it’s called folic acid ( vitamin B9) 400mcg is a modest amount . It’s important because it works together with B12 .

You will find out how often you need to inject by trial and error .Best wishes .

[Clarkie477 in reply to wedgewood]

I’m on 5mg prescription of folic acid so that’s covered. I’m still shocked that I would go downhill that quickly. It’s actually quite frightening.

[Justiina in reply to Clarkie477]

What is frightening about it? I mean you have been unwell for some time, few shots of B12 doesn't fix it in couple of weeks.

Deficiency did not happen overnight.

We are all individuals and you just might need more frequent injections as we don't know all possible factors affecting how much you can use of those injections.

Like for me one certain gene mutation suggest I use B12 rapidly and it is not properly reused as in normal health. I don't know if that's true per se but I use it as an example. I need weekly injection or I feel very unwell. Oh well at first it was very frightening but eventually you adjust with it and take it as in the end it doesn't matter you need more frequent injections. It keeps you going and you need to take as many as it needs to make you feel alive.

[Clarkie477 in reply to Justiina]

I’m not sure why you’re being rude. I feel frightened because it’s not something I expected to happen so quickly and so dramatically in such a short time.

[Justiina in reply to Clarkie477]

I apologise if I sound rude, was not my intention. Not trying to belittle or undermine you and how you feel, I tried to explain that what you are experiencing is normal and nothing to worry about.

If anything, it proves you need B12 and made the right choice to self inject.

You have been unwell for long , it might take long time to be able to extend the gap between injections, that's all.

[Miss-guineapig in reply to Clarkie477]

It is still very early days. Long term improvement is slow but it will happen. Two years on, I have good periods of time, then at other times I can feel ill and find no logical reason. Just keep following advice on this site, as there are a lot of knowledgable people. After two weeks loading doses, my go prescribed daily iron, folic acid and VitB12 injections 8-12 weekly depending on my symptoms. I now continue with 8 weekly jabs from Gp prescription (I self inject) but I have also bought ampules from Germany and give myself a jab in between my Gp script. The only other vitamin in addition to folic acid that I take now is Vit D, in general I feel well , much more than I am ill but it's not always easy, it's like a rollercoaster. Good luck, and I wish you well.

[Nackapan in reply to Clarkie477]

Yes that was what I was aiming for but it hasn't happened. But I have not got back to my old self yet either.

Go by your symptoms. If the loadi g doses had such a Good effect on you stick with it.

Yes it is scary I agree

[Clarkie477 in reply to Nackapan]

Thanks Nackapan. I have just been grudgingly sent a letter from my GP saying I can have loading doses at surgery. I’m going to take them and then inject weekly for a while and then start expanding the time between them and see how I get on.

[Awakeshattered in reply to Clarkie477]

I tried expanding the time between injections and ended up being off work for a while! I learned the hard way, I am back to every other day which seems to work for me ..