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Hello folks was diagnosed with pernicious anemia dec last year had loading dose ok b12 last jab jan next due next week I know there is great debate about how often jabs should be given my doctor says 3 monthly often enough but I know that for last 4wks symptoms have returned with a vengence how do others cope doc even said symptoms could be psycological also does anyone have digestion problems?ie I seem to have low gastric acid something else that seems to be common again any advice on how to cope wasnt sure whether to join or not as no one seems to use this site very often any advice appreciated regards Mo

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  • Posted

    Hi Mo Just read your post.You had any bloods done recently?Do you know what your B12 levels are and folate is a must too.Gastric problems are extremely common and no way is it in your mind.It can take a long time to get back to feeling anything like NORMAL like up to 3yrs in some cases.Some sufferers take B12 in lozenge form as a supplement,but having PA means you only absorb about 1% others go for self injecting(means having to order on-line from abroad though).Lozenge bought in USA in bulk work out cheaper I bought 5000mcg.

    I didnt get any loading jabs so have found it a very very slow uphill climb,and took the decision to self inject,I have neuro symptoms which makes things much worse for me as I have MS too.I am often confused to whether my symptom is PA or MS related.When I was diagnosed with PA I found the pernicious anaemia society forum(which is down at the moment)that site is a godsend!This is a very complex disorder with many symptoms but when you speak with others you feel less alone and more able to understand what is going on with your body.there is some very good reading out there that will help you to understand much more.Hope some of this helps and feel free to get in touch any time. Take Care Sand xx

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  • Posted

    Hi Mo,

    It takes time as Sand said. With PA a lot seem to have IBS type problems. I found Folate to be very helpfull. It is very worthwhile to have regular bloodtests testing serum B12, folate, B6 and ferritine, as all these need to be in good supply for your body to produce good bloodcells.

    Often patients with PA have Thyroid disorder aswell.

    With enough B12 and if needed other B vits etc you should make a very good recovery.

    I have PA for over 8 years now, after 6 years of conventional treatment and diagnosis of sub actute degeneration of spinal cord I have decided to take more control over my own health. I self jab and take folate (5mg weekly, or twice a week depending on how my stomach feels), and have no IBS symptoms for the first time in 23 years. It's only after increasing my B12 (self-jab) that I feel pretty normal and well now. I personally believe little but often is best, but it does mean you are \"stuck\" with regularly jabbing B12 (I jab cyano weekly) which can be a bore for the rest of your life.

    Hope this helps,

    md.

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  • Posted

    Thanks Folks bloods done 6wks ago b12 -620 folateok also normal levels ok doctor says anything between200-900 within normal levels and as I was within this level symptoms not relevent to b12 so must be psycological wish someone would tell my body this as I have deteriorated since about 4wks ago next jab due thursday this week I also have neuro problems consultant at orthopedic hospital said possisly perifial neuropathy caused by lack of b12 I have been unable to work since summer last year with hip and back problems as well lifs a bitch hopefully will get some relief after jab I also used pernicious anemia forum it was very good for getting support hope it reopens would love to know what someone who doesnt have pa levels are it would be interesting to know as no one has been able to tell me how jabs went from monthly when my mum had it years ago to 3 monthly now thanks for listening love mo
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  • Posted

    Hi Mo,

    PAS forum should be up and running again soon :D ...just some hick-ups to be sorted. But you should be feeling better than you do. As you know some feel fine with jabs every three months, others seem to need them more often, with neurological problems the advice (BNF) is to have them once every two months (hydroxocobalamin), the manufactor of hydroxocobalamin actually states in their leaflet every two or three months maintenance jabs for PA. There are a lot of people with PA that feel much better with once a month hydroxocobalamin.

    If you can, consider self injecting; as that would be cost evffective should you be able to get support for more frequent jabs. Do you know if your thyroid antibodies have been tested? Some have hypothyroid problems that does seem to hinder feeling well if not treated.

    It may help to take an over the counter multy vit b. Some find taking B12 lozenges in-between jabs helps. They did nothing for me though, it is expensive compared to an extra B12 jab. Perhaps ask to learn to self inject and it will free you from standardisation, it may give you back some say over your body, you will be able to adjust your frequency of jabs to when you feel you need it, very liberating in my experience anyway.

    Hope this helps,

    md.

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  • Posted

    Thanks md I have had underactive thyroid for about 20 years bloods were checked 6 wks ago and thyroid was ok will talk to nurse on thursday but dont know if she will agree to more jabs

    Just been for a walk with dog and struggled to get home

    How do you go about self injecting dose it have to done through doctor?, as he is old school cant see him agreeing!

    Many thanks for your help feeling isolated at the moment nice to speak with someone who understans never thought a vitimin could cause so much problems kind regards Mo

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  • Posted

    Hi Mo,

    Yes you need to get the help and support from your GP to learn to self inject. I found the nurses very helpfull and supportive, GP needed a lot of encouraging...

    People with a longterm condition should be given the help and support to manage their condition, it will save the NHS a lot if you learn to self manage your jabs. But you need to learn how to do IM jabs and have regular monitoring. You can but ask...

    Kind regards,

    md.

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  • Posted

    Thanks md will check on thursday will let you know outcome kind regards Mo
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  • Posted

    Hi sorry to be late in getting back to you, spoke to nurse and she agreed jabs should probably be oftener also works doctor he said should be 2 monthly at least until nerve damage maybe improves will have to get my own doctor to agree dont see him until 28th any sign of PA forum starting up really miss it as nobody seems to use this one very often not so much stories to compare will keep you posted regards Mo
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  • Posted

    Hi Mo,

    God news you are at last going to get the jabs every two months instead of three! Absurd how long it takes and how difficult it is to get more B12 when you as a patient feel you are going down hill...first get all the nerve damage, then perhaps treatment if you are lucky and keep on going to GP etc. Sadly not all nerve damage goes even with loads of B12, but cross that bridge when you need to.

    Anyway the good news is the forum could be in working order this afternoon, but that is if all goes well.

    Keep your spirits up Mo,all will get sorted eventually,

    md.

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  • Posted

    Hi md gpt your message not certain to get more b12 yet have got to get gp to agree but at least got more ammunition to play with I tried P A ASSOCIATION last night but could not get through was told forum site was forbidden tried to send email but was rejected can you help many thanks Mo
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  • Posted

    Hi Mo,

    Its all taking loads of time the forum, its there at the mo but one needs to be a member and will get then a password to post. Its in the newsletter.

    Surely if you have neurological problems your GP could look at the BNF and he will see that the maintenance dosis for PA with neurological issues is hydroxocobalamin once every two months. If there is neurological involvement, hydroxocobalamin or cyanocobalamin may be given in doses of 1000 micrograms on alternate days and continued for as long as improvement occurs.

    This is also to be found in PRODIGY Guidance

    Anaemia — macrocytic:

    http://www.cks.library.nhs.uk/anaemia_macrocytic/view_whole_guidance

    According to a healthminister it is generally considered good practice for GP's to follow the recommendations of the BNF.

    A GP who decided to depart from the guidance offered by the BNF may be expected to explain the reasoning behind it.

    I hope you will get there Mo with the support of the nurse and neurologist!

    md.

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  • Posted

    tHANKS MD I have managed to get back on P A WEBSITE was a member before I will be seeing doctor armed with all info I have gathered hope he will agree to further jabs if not I will be asking a lot of questions as to why not thanks for advice will let you know what happens on 28th regards MO
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  • Posted

    [quote:109662c240=\"maurich\"]Thanks Folks bloods done 6wks ago b12 -620 folateok also normal levels ok doctor says anything between200-900 within normal levels and as I was within this level symptoms not relevent to b12 so must be psycological wish someone would tell my body this as I have deteriorated since about 4wks ago next jab due thursday this week I also have neuro problems consultant at orthopedic hospital said possisly perifial neuropathy caused by lack of b12 I have been unable to work since summer last year with hip and back problems as well lifs a bitch hopefully will get some relief after jab I also used pernicious anemia forum it was very good for getting support hope it reopens would love to know what someone who doesnt have pa levels are it would be interesting to know as no one has been able to tell me how jabs went from monthly when my mum had it years ago to 3 monthly now thanks for listening love mo[/quote:109662c240] :?:
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