Should Have Joined Years Ago!

[Discombobulated247]

Became a member of PAS last week, and wish I'd done it years ago! The information available, and advice from members on the forum has blown me away. So, I'd appreciate any advice you could offer me.

Diagnosed with PA 8 years ago, I'm not aware (apart from post B12 loading) of my levels being checked or monitored). Receiving B12 jabs every 8 weeks, but still don't seem to function on all cylinders, perhaps 50% of them!

Last jab was 1st June, short term memory is shocking, numbness in fingers and toes seem to be a permanent factor, and a couple of weeks ago my arms and legs started to turn purple intermittently, (Google suggests Livedo Reticularis?) and not effected by temperature. Joint and tendon pain is also a new symptom.

I'm waiting for B12 to arrive ordered on line, Methylcobalamin 500mcg, and intend to self I'M inject. Waiting to hear from GP regarding blood tests to measure levels pre and during self medication.

Can anyone recommend what shoul be tested, frequency I should inject and other supplements that may help?

I'm hoping to maintain my ability to park the car without damaging paintwork or attracting an audience, which starts to happen a couple of weeks before I get my jab!

[clivealive Forum Support]

Hi Discombobulated247 have you not had your Folate level checked as this and B12 help your iron to make red blood cells and a deficiency in one or other affects "production".

I'm not medically trained but have had PA for over 45 years and have to supplement both folic acid and iron in the form of ferrous fumarate.

[Discombobulated247 in reply to clivealive]

Hi clivealive, I'm not aware if folate has been checked. Following PA diagnosis, I've just been left to have my injections which started at 12 week intervals, fortunately my friend was the nursing practitioner there and changed it to every 8 weeks. There's been no follow up regarding PA, GP's I've seen with other health issues have been dissmissive/not interested when I've broached the subject. Blood tests have shown raised white cells??? But I've had no explanation or further investigation for this. I've only become aware of the necessity for supplements from the PAS website.

[clivealive Forum Support in reply to Discombobulated247]

Your raised white blood cells may just be due to your fighting off an infection, cough or cold but that should be down to your doctor to follow up on if the level was high.

As to having your P.A. "dismissed" I had the same experience for nearly forty years as I never knew anyone else who had it and neither the succession of doctors or the nurses I saw ever asked me how I was coping.

It was only when I really began to notice a return of some symptoms in the run up to my next (then four weekly cyanaocobamalin B12 injections I'd been on from the beginning) that when I asked my then "one size fits all" G.P. to increase the frequency he simply laughed and said it couldn't be the P.A. because I was getting the injections. So as the forty year old repeat prescription said "every four weeks" - every four week it must be.

I then joined the Pernicious Anaemia Society and was absolutely amazed to find that I was not alone in the world and that many others suffered the same problems. So I fought and screamed, jumped up and down and waved my arms about (metaphorically) and now have my injections every three weeks and I'm still "clivealive" at aged 75.

[Bengie in reply to clivealive]

Me too Clive!! Smiling here as I agree with everything your saying here. One size doesn't fit all and I also get one every 3 weeks and I'm now Self Injecting since last Friday and again today. I find it very easy. Every 3 weeks from now on though as I have been getting 2 a week for the last 7 weeks. Of course it can be whatever I feel like it from now on as I have all the stuff here at home now!! lol!! If it wasn't for all of you here I'd never have gone down the road of self injecting. It's so easy and painless. I now have control of my life.

I also was shocked at how most people here are having such difficulty convincing their doctor that they need more injections. WHY??? Doesn't it make you so mad!

[Discombobulated247 in reply to Bengie]

Hi Bengie

Can you tell me what you're using to self inject?

I've bought both Methycobalamin, and Hydroxocobalamin which should arrive tomorrow, and don't know which to use.

It's good to hear it's working for you, do you feel the benefits immediately when you've self injected?

Best wishes, Lynne

[Bengie in reply to Discombobulated247]

Lynne,

I'm new on here since April so I'm not knowledgeable enough to advise you. Clivealive is sound and will put you on the right track. I take cyanaocobamalin B12 injections every three weeks but recently I had lots of side effects (memory loss, pins & needles etc) so for the last 7 weeks I've been getting two injections a week. I'm allergic to the slow release formula in the three month injection so cyanaocobamalin it is for me for life. I only started self injecting ONE WEEK ago today so I'm no expert YET. I also live in Ireland and I must say I've had no problems with my doctor or the nurses that have been injecting me for the last 25 years. As one nurse said recently "Your not looking for morphine, just B12". If you have PA you can't overdose on B12 . Mind you doctors don't understand or know much about PA.

As for feeling the benefits, I guess we are all different so I can't say. You just feel better no time limits?

Good luck, Jill

[wedgewood]

Usually no need to monitor B12 levels if you are receiving injections , as they will be very high. How do you know that you need Methycobalamin? Hydroxocobalamin is the usual sort, and is much cheaper and easier to obtain.

You must always make sure that you take taking plenty of B9 (folate or folic acid) 9 '12 work together!

As for frequency , you need to determine that your self . Just note once when exactly the effects of low B12 set in and inject a few days before that time . No need to worry about ovedosing . You just excrete any that's not required .

Best wishes .

[Discombobulated247]

Hi Wedgwood, Methycobalamin? Hydroxocobalamin?..... I think I'd seen a post before ordering from B12online, they were unable to advise which to use, but stated both would work.

Thanks for the supplement advice, I'm off to the health shop to stock up!