I'm New Here...

[Moosey]

Good Morning,

I was diagnosed with PA a few weeks ago (after years of hospitals thinking I had Colitis, then Crohns, then Cancer, then Depression etc). I had my first lot of treatment 3 days ago (which hurt a lot more than I was expecting). I will admit and say I know absolutely nothing really about PA other than stuff I've read on the internet, which I know isn't the best place. So any information from people who have the condition would be greatly appreciated. Such as:

I had blue finger nails and they really hurt (and since the injection I haven't had them); is this normal?

Since i started the injections, i have got really bad acne, is this normal?

My hair has been getting really thin over the past few years (I am 23) and falling out; is this normal?

There's loads of questions I want answers too; probably some I don't even know of yet. But the main thing I suppose, is how you accept the diagnosis? I am typically quite a negative person and suffer from depression/anxiety and I'm starting to panic about what will happen if the treatment doesn't work, and my mind is just fixating on the 'incurable' side of the condition, rather than the 'treatable'. So any advice or words of would support would be really really appreciated.

Thanks

V.B

[pvanderaa]

V.B. You've come to the right place. Just realize that since you already have psychological symptoms which result from neurological damage you must have been very low on B12.

Acne arises because the B12 is being used by your body to generate hormones. I'm 58 and still get a pimple now and then.

Finger nail being blue was probably a symptom of the anaemia. Another one is no half moons on your finger nails. Now that you are getting B12, red blood cells are forming correctly and eventually the half moons will reappear.

Start a logbook of all your symptoms and try to assess a severity score. As you start on B12 injections, you may feel like you are on a roller coaster of emotions and symptoms. By logging these and monitoring your body's reaction you may be able to identify some "marker" symptoms that will tell you that you are getting low again.

Each person gets different Symptoms so post some of your here and somebody may have had it as well.

[clivealive Forum Support]

Hi Moosey when I was diagnosed with P.A. 45 years ago I was "threatened" with two years to live - or else I would have to either eat raw liver 3 times a day or have B12 injections for the rest of my life - I opted for the injections and I guess they must be working because I'm now 75 years old.

But to answer some of your comments, I'm surprised that the injections hurt but it may be that either the vial had been kept in a fridge, the nurse was inept, the needle point accidentally caught a nerve or you were tensed. I'm not saying it never hurts but after more than 600 injections I can count the number on the fingers of one hand when it's happened to me.

It is true that P.A. is incurable but it definitely is treatable so put that worry behind you. However you need your doctor to check your Folate level as this is essential to process the B12 you are having injected.

I am not a medically qualified person but there are others on here who will be able to give you lots of good advice.

I wish you well for the future

[Hidden]

You may need to have your thyroid checked (including the antibodies). hair falling out is not normal. You may need a dietary approach as well as other vitamins. folic acid follows B12, D3 needs K2, magnesium may need slightly sea-salted water. (a litre per day or more). Hope you improve over the next few months. I am not sure if the finger nail signs are B12 or autoimmune related. I am trying to cure my Brain/learning memory B12 deficiencies. You need to have regular full blood tests including suspect antibodies (get copies from your doctor/consultants...always) and monitor the changes as you progress with treatment. Cheers.

[Gambit62 Administrator]

hope you have had a chance to look through the pinned posts and also visited the PAS website

pernicious-anaemia-society....

Thinning hair is quite a common symptom of B12 deficiency and that can include hair loss - though it is also a symptom of thyroid problems - and it is quite common to have thyroid problems as well as B12 deficiency.

There are products out there aimed at people with hair loss/thinning that are based on B12 - though I'm not sure if they will work if B12 deficiency isn't the problem.

You mention negativity and depression - these are common neuropsychiatric symptoms of a B12 deficiency - I suffered 40+years of depression and anxiety before I was diagnosed as having a B12 deficiency and they disappeared when I started to get the treatment that I really needed.

Acne is a known side effect of B12 injections - whilst it might be down to hormones as pvanderaa suggests it is also possible that it is caused by the bacteria that live on your skin responding to higher levels of B12 on your skin by producing a substance to which your skin is reacting. This may be a temporary reaction - ie your immune system kicks back in when you start treatment with B12 and it tends to kick back in in overdrive rather than gently going up through the gears! - on the other hand for some people it is a regular feature of B12 shots that dies down as the levels of B12 in their system reduce. If it persists or is particularly unbearable then I'd recommend that you talk to your GP about options.

Whilst PA may not be curable the B12 deficiency it causes - which is the thing that kills you/makes you ill - is quite easy and cheap to treat - though getting a GP to treat you in accordance with personal needs can be a challenge.