How long till I feel human?

[Vicki-s]

After having a headache and pins and needles in my arm and feet and feeling dreadful for weeks I have I have just been diagnosed with PA. I am having six injections over 2 weeks then one a month for ever. How long will it before I feel human again??

[Lisahelen]

You dont say how many you have actually had so far but most posters will say that they often felt worse before they noticed any real improvement, myself included.

You are lucky to be being treated each month as most of us struggle to get our gps to treat symptoms rather than textbook guidelines, and can only have it every three months.

Good luck and do keep posting any questions etc ther are plenty of us who can help you.

[Gambit62 Administrator]

B12 tends to be a very individual thing. Some people find things improve very quickly but others find it takes time - up to 6 months or more - and the symptoms can get worse before they get better (eg more pain as nerves heal and more severe responses to infections and the immune system heals).

You say that you had pins and needles - this is a neurological symptom of B12 and the recommended treatment by the BCSH is shots 3x a week until there isn't any further improvement (with a review at 3 weeks) and then maintenance shots every 2 months.

bcshguidelines.com/document...

Best thing to do is to keep a diary - this is also because lots of people actually need B12 maintenance more frequently than it says in the text books - so you can document a deterioration in the gaps between symptoms - which can help in fighting for more frequent maintenance shots.

[Vicki-s in reply to Gambit62]

Thanks so much this is a learning curve and want to know as much as I can. Just been for my second injection today and feel dreadful tonight the pins & needles are worse than ever! Also I got it wrong the nurse informed me after my initial 6 loading injections I only get them every 3 months NOT every month! Is it normal to have a permanent headache??

[Gambit62 Administrator in reply to Vicki-s]

To be honest I'm not sure there is a real normal with B12 - everyone's symptoms tend to be different but a permanent headache isn't something I remember or one I've heard often - though migraine like headaches are quite common. My migraines get a lot worse (mainly the gut spasms that come with them) if I don't manage to get the mix of B12, B9 (folate) and B6 correct and there have been times when I've had migraines more days in the month than not (but that was a while ago).

Worth keeping an eye on your folate levels ... and I think my problem with B6 is related to folate and the fact that you can convert B6 to B9n and vice versa so if one is in short supply the other can end up getting low .... and your body needs folate to be able to process and use B12 effectively. However, you can overdose on B6 (>100mg a day over a few months leads to neuro problems which in some cases haven't reversed when supplementation stops). - so if you try supplementing monitor the dose carefully.

There is also a possibility that B12 isn't the only thing going on so would probably be worth mentioning the headache to the doctor.

[fbirder in reply to Gambit62]

Are you sure about the interconversion of B6 and B9? Because the two are totally different chemically.

[Gambit62 Administrator in reply to fbirder]

Came across it in relation to studies on dementia.

[fbirder in reply to Gambit62]

Ah, must have been wrong. As a chemist, if somebody asked me to start with one and make the other my reply would have been unprintable.

[Lisahelen in reply to Vicki-s]

Did you get the headaches before your loading started?

I used to get them, my gp and cardiologist said it was because i had high blood pressure. I proved that was not the case by using a home monitor and taking notes about readings and if i had headache,or not. But just before i got my loading my bp went very erratic, it has settled now, and i dont get the headaches.

Didnt start to feel any real improvement in any of my symptoms until after my forth loading though.

Unfortunately like the symptoms vary, so does the repairwork, but good luck i hope you start to feel an improvement soon.

[Vicki-s in reply to Lisahelen]

Yes I have the headache for 6 weeks that was my first symptom I had and went to the dr after 2 weeks of headache because the pins and needles started. I have my third injection Monday and I'm praying it starts to make a difference! I'm amazed how many people when I tell them I have PA say "oh just take some iron" or "oh eat some liver you will be fine"!! The dr has booked me in for an MRI 4th November just to check there's nothing else going on.

[diamck]

I had my last loading injection 5 weeks ago and after the 2nd injection my tiredness began to lift and was the first improvement I noticed, I felt some of my symptoms became worse before they got better like the lightheadedness and anxiety especially just after the injection. At the moment I have developed acne ,hoping that will soon go! Still have tingling in feet hand and side of face but could be early days yet as have been told it might not go away. I also went through spells of itchiness and headaches which passed. I do feel so much better and hope 3monthly injections will be enough hope that helps

[expatkerry]

Hi there,

Concerning the headache: I posted about this recently, I had migraines after my first shot and now that my second one is due I'm feeling apprehensive. However I had done something stupid just before my treatment started I overdosed on Licorice (yes, licorice) as it was helping my gastritis. I ended up with headaches from high blood pressure and the hormonal disturbances that result from this type of intoxification. I'm hoping it was the licorice as I need the B12

[Polaris in reply to expatkerry]

I found huge relief from years of digestive problems, including gastritis, by avoiding gluten and taking daily spoonfuls of sauerkraut (health food shop not the supermarket type with vinegar). - better than any other probiotic I've tried).

As you've already discovered, licorice is contra indicated for high blood pressure.

[expatkerry]

Hi, I'd like to try sauerkraut but living in France I'm short on the sort of health food shops that are everywhere in th UK. I've checked it out online and in fact it's not difficult to make, I think I'll give it a go!

PS the headaches were due to the licorice, which is a relief as I need the B12