Pernicious Anaemia

Buddingblonde

I have recently been diagnosed with PA and I am looking for others who have the condition just for a wee chat about how the condition affects them.
I am on 3 monthly injections and feel very cold and craving carbs like no ones business. I also have bad tinnnitus at the moment and a banging head. How does PA affect you and what do you find helps.
I am typing this while cuddling a hot water bottle and with heating on full blast. Just cant get warm.

I am not looking for medical information - just living with PA information.

Moomum

Hi,

I have pernicious anaemia and normal good ol iron deficiency anaemia too. I have to have B 12 injections every 12 weeks at moment but when I was pregnant had to have them every other day. I also have iron transfusions when that drops too low. All in all I don't suffer to badly, I'm a bit moody and a huge klutz most of the time but gets hundred times worse just before my injection is due, my mind goes literally blank and I cant remember anything I'm meant too.

Carbs are a comfort food and I couldn't do without them but never really linked it to my PA before, does make sense though. All in all I just get on with it and I've had it so long that it's normal to me. I do get headaches and go dizzy sometimes but as long as I'm on time with my injections then it's pretty easy to get along as normal.

Not sure I've really helped you out at all but happy for a chat if ever you need one.

Xx

Buddingblonde

Thanks Natmid - I am taking high dose one a day iron tablets as I am a veggie so need to keep my iron levels up. I suffer heavy periods which dont help and the tinnitus drives me nuts.
Do you find that you suffer cold hands and feet?
How long after an injection do you start to feel better? I have been feeling like a wind up toy slowly unwinding since my last period and although I am not as tired as I was before I was diagnosed (I was hospitalised for a week in December) but I feel that I am very slow at the moment.
The other thing I am wondering if others feel is a brain fog - sometimes I find that my memory is shot to pieces and the last 2 weeks it has been terrible.

Moomum

Did they just give you one injection when diagnosed? You really should get one every other day for a week or sometime two to get the level straight back Up. This is what happened to me anyway. I definaltely feel a brain fog, it's ridiculous sometimes but once the injection kicks in it really will help.

Periods are awful when you suffer from anaemia too, as you are losing iron that you have to little of anyway. I went on the the depo injection so I now only have a one day period really which means I cope so much better energy wise.

When was your injection? If it was more than a week and youre still not feeling better i'd maybe go back to see if your b12 level has gone back up? If not it may mean you need a top up. I do suffer from cold hands and feet and thermal socks are my saviour,mi wear them all the time.

Buddingblonde

I had injections every day while I was in hospital and then one a week for a fortnight after - friday was my first 12 weekly jab (which in my opinion I could have done with 3 weeks ago).
I am back at the specialist in a couple of months so I am hoping that she will authorise the injections closer together.
I felt so bad that I bought b12 lozengers (the ones that go under the tongue and go into your bloodstream that way) to try to top me up. I am thinking about taking 1 every day and see if that helps the winding down feeling after my period.
I might have to consider the depo injection if that stops the period problem - dont want to have to go down that road if I dont have to but periods are heavy anyway without the impact on the blood supply after.
Will look out for thermal socks too - i hate having cold feet!

McKneff

I have PA, cant say it affects me at all apart from feeling the cold but I put that down to being thin.

Never had a problem really, must say Ive never heard of the under the tongue lozenges, were these prescribed by the doctor.
I wouldnt think they were a good idea if they werent, (is there such a thing as overdosing) because the three monthly injections
should keep your levels at a normal level.

Have you spoken to your GP about other symptoms, the brain fog, headaches, they may not even be linked to yur PA.
I also have brittle bones and arthritis, (an auotimmune disease which probably caused the PA as it is linke to this) but still work and that doesnt affect me either.

As far as I am aware PA is not linked to iron deficiency.

I look really healthy but in reality I'm falling to bits inside:D

Buddingblonde

McKneff wrote: »

I look really healthy but in reality I'm falling to bits inside:D

You made me laugh!
You cant overdose on B12 as it is water soluble so what you dont need you wee out!
The lozenges were mentioned on the PA society website as some people use them - seems to be more common to use them in the US that here but some people use them to get a small does every day to top them up between injections.
I know that all my symptoms are linked to my PA, as when my blood count returned to normal all of them vanished and have slowly returned over the past month as I have started to feel run down again.
I am going back to see the consultant so I am hoping that she will let me have the injections closer together as I really do feel that for me the injections are too far apart.

McKneff

It possibly leaves some peoples bodies faster than others, I suppose. I really dont knw, my three monthly ones are certainly enough for me but then Im only 7.4 stone so maybe even that could make the difference.

Buddingblonde

I am considerably heavier that that - gulp (almost double!).
However one of the side affects of getting back to full health is that the weight is coming off quite quickly - obviously as I have been slowing down over the years I can become less active and have been craving carbs for energy. Am pleased with the weight loss so far and hoping that before the end of the year to be in single figures again!

Moomum

I work in a hospital and one of my consultants there told me the lozenges that dissolve under your tongue are the fastest way of getting it into your system but UK hasn't realised that. I'm 12 '10 and the 12 weekly injections just about last for me, could maybe do with them a week earlier! I also have an autoimmune disease which is most likely the cause of the PA. Aneamia is another side affect of the ai. Having both is no fun! Had my injection today and have to say it hasn't kicked in yet and I feel dizzy and like poop tbh.

Buddingblonde

Ill let you know how I get on with them then natmid - I am hoping that I can convince the specialist to bring the injections closer together rather than having to buy the lozenges to keep me going (the lozenges are about £10 per month).
I had my injection on friday and it hasnt kicked in yet so very sympathetic to the feeling dizzy and poop. I am not dizzy but head is thumping as my ears are ringing and my feet are numb with the cold even though I have socks sheepskin slippers and a hot water bottle. Breathing is better today (was feeling a little wheezy at the end of last week before my injection).
How long does your injection normally take to kick in or does it vary from injection to injection.