How Often do you feel you actually ne... - Pernicious Anaemi...
At the moment I get B12 injections every 12 weeks, but I also use high strength B12 patches weekly because after 2-3 weeks the effect of the injection wears off. The patches + daily folate do their work and keep me on an even keel.
I've gone down the self-injecting route, buy the b12 hydroxo from abroad and the syringes from amazon, would rather it was done at the surgery but needs must
Me too - my husband does mine t home and is terrified he will inject air!
The GP refuses to offer me more than once every 2 months even though I still have neurological issues.
The neurologist my GP sent me to ( after 6 months of me begging to see a hematologist and a neurologist) said he knew nothing about Pernicious Anemia .....
and then went on to say that doing injections more than once every 2 months was silly, and what would I end up doing, asking for it every day???
he spoke to me like I was an idiot.
I explained to him that the symptoms come back after a couple of weeks and he said that was normal - the symptoms get better and worse and have NOTHING to do with how much B12 I have!!!
what a plonker.
The worst thing is - my husband now thinks that is true, so once again I am alone in trying to solve this problem, with o support from my family because they would rather believe a doctor who has no clue, than me - who has bothered to research this issue and is living the Hell every day!
Hi, do you have facebook, if so I would highly recommend joining the Pernicious anaemia/B12 deficiency support group and the New Beginnings Deficiency Information and support group pages, they are both very informative and helpful
where do I find these groups. I would love to talk to someone who understands pernicious anemia because they have it!
I feel the same way as you sbotwright. Since ive had PA ive tried explaining to my partner how i feel and because she doesnt understand what im going through she takes it im being lazy , or im being moody, i tell her its not me, its the PA but i cant get through to her and its causing some stress in the relationship, which isnt to good as im also diabetic and my blood pressure is high also. I just want people to understand and talk to others that understand. Oh ive had PA about 5 years now, but only just been diagnosed with it, i say 5 years because the symptoms over the last 5 year have been exactly as they are now, but i never went to get it checked out, i thought it was probably the other medication i was taking making me feel like that.
It is so soul destroying to have to do this sort of battle. I paid to see a neurologist as I was so worried about the lenght of time it took to diagnose the condition and I had been ill for years. My level was only 75. I was told after an MRI and conduction tests I was fine. However I still get pins and needles if my B12 is too infrequent and I have never regained sensations in my finger tips or big toe. Trouble is the GP would assume that there is no neuro damage. My last endoscopy showed a slow gut motility and atrophic gastritis . The consultant said there was a paucity of duodenal contractions - so I reckon that is nerve damage to the gut. My jabs are about to be reduced and I just feel so desperate and anxious again. I am sick of the GP system and the rubbish NHS protocol.
I believe you and loads of others will recognise what you say. Your husband should listen to us and be supportive of you. You are not making this stuff up and we fellow sufferers know this.
Sending you a hug.
Gillsie
Great post gillsie, i relate to everything youve said.
Mrs Somerset,
It is your body, and only you know what you are feeling, and the effects of the B12 shots have on you.
I would not share your GPs thoughts at all, with your family.
Tell them only your thoughts, as though, they came from your GP.
You don't have to prove anything to your family,this is your health issue, you are the one
who has all the symptoms to deal with, not them.
Air your thoughts and feelings here in this forum.
I know the feeling though, it can be a very lonely road, at times.
Look after yourself.
Manukia
xx
What a nightmare, that's one of the mad things about this condition. Some doctors know next to nothing about it yet its linked to so many other illnesses. Also people laugh when you tell them you are b12d saying its only a vitamin. Pernicious actually means fatal, scary.
I feel for you. Change Doctors immediately if you can. My symptoms got so much better having 6 injections every 3 months two or three times a week.
Oh hun ,I feel for you. Please don't believe this doctor. Most doctors really don't understand PA. It is the step child of the medical world. Please look into the support groups for PA on facebook . They are wonderful. People who really understand what you are going through.
Glad to hear you had a good experience on facebook - I found them awful. If I questioned something too much people became rude and very nasty. Not a good platform for improving health - uneducated people giving health advice can be dangerous. Maybe if the doctors where more helpful we wouldn't have to go down this route..........
I have sent off for diy kit too as I'm literally tired waiting for the doctor to give them. Once diagnosed as P A they shouldn't test again legally and go on your symptoms.
I’m sick of trying to explain this to my gp, first thing that gets said if I say they aren’t working having it done very 3 months is we need to do your bloods - she’s even sent for me to have them done the week after an injection 🙈 x
I feel very lucky to have mine once a month. By the 3rd week I feel tired and am ready for my next injection.
Recently I have found my B12 injection from my GP hasn't worked at all. I am constantly drained, suffer headaches, feel shaky, tearful, pins and needles in my hands, arms, legs and feet are getting progressively worse. I feel jittery and off balance, and forget the most simply name of things when in conversation, and forget what I am actually talking about, or the point if the conversation. I have just purchased my own B12 to self administer as my GP will not give me it any more frequently on the NHS, so taken matters into my own hands! So frustraitjng and fed UK with my GP fobbing me off with antidepressant prescriptions, when all I need is more B12 and a blood test to check my folate and ferritin levels which have never been done! Diagnosed with PA due to positive result for IF Antibody in 2010, and feel rubbish!
In actual fact it was difficult for me to answer this question, as the frequency varies, I self inject as needed. (because once every 3 months is impossible for me) I have tried sub-lingual, patches and nose spray to no effect at all. I also take folate as METAFOLIN which does not mask B12 deficiency.
i also found this difficult to answer. Exercise plays a big part in how often I need the injection. Usually 3 weeks when exercising, but about 5-6 weeks when not...
I think this poll would be much more useful if it also asked which form of B12 is being used (cyano, hydroxo or methyl) and how it is being injected (intramuscular or subcutaneous) as this appears to make a considerable difference.
I inject 1mg hydroxo IM fortnightly. I probably don't need to inject quite so frequently much of the time but, like others have already commented, my actual requirement varies and I believe in injecting before any symptoms return so inject fortnightly as a precaution.
I self inject, my friend is a practice nurse who does it for me whenever I feel I need one. I buy B12 from a reputable pharma company in Germany an needles/syringes from medical website here in the UK. My body usually let's me know when I'm due an injection, without even looking to see when I had my last one I know around week 3 I start to feel generally just pants!
I agree - I can tell when I need one as the syptoms worsen, feel pants, pins and needles, tinnitus, breathless, etc,
I get every 12 weeks (hydrox) but definitely feel it by 8-10 weeks if not before and imagine monthly would be a great benefit.
I find it varies especially if I exercise. Just lately monthly jabs are not enough. I supplement with sublingual and spray. I seem to get low body temperatures to and low moods. Asked for thyroid check and told tsh 3.1 was normal. I definitely seem t be worsening with pins and needles back and breathless. As my serum ferritin is always low between 12 to 30 I have started taking some iron tablets. It is all done bind and ihave no idea if this is the best thing.
My doc gives me an injection every 2 months, I top up with injections at home so I get it every month in total, however I feel I need it each week.
My cousin - same age as me, lives in Berlin, Germany, just diagnosed, got it daily to start and now has it weekly moving forwards and the doc has advised him that it is up to him to advise them how often he needs it based on how he feels - wouldn't that be nice over here in the UK!!!
twice a month
I'm just starting to have my injections on a 2 monthly basis, fingers crossed
I had 3 aunts and a mother in law who all had PA. They had their injections every month and were pretty much 'gagging' for them a few days before (they have all died as they would have been in their 100's by now). The guidelines seem to have changed since then, and I am told I only need them every 3 months. I have had quite a battle to get them every 2 months and the consultant haemotologist says they should last for 9 months. I will soon have to go down the self treatment route. Does anyone know why the system has changed? There seem to be so many people needing treatment they are not getting which is causing such distress and illness - all for want of a simple injection often enough.
Nobody seems to know what the 'scientific' evidence for changing from 1mth to 2mth and then 3mths as per current is. closes anyone seems to be able to get is a study done in 60s which show that on average people retain hydroxocobalamin for twice as long as cyanocobalamin ... but the study also made it quite clear that the standard deviation on that was so large that it wasn't possible to apply it to the general population.
I'd suggest you look at other mechanisms - sublinguals, nasal spray, patches for supplementation if you are reluctant to go straight to self injection.
Although IM injection is the only method offered by the NHS there don't seem to be any studies that show it is the only or necessarily the best method ... and the best method probably varies from person to person just as much as the frequency with which we need it changes. I need more than 1mg a day to feel okay so end up supplementing with nasal spray even on days when I get an NHS top-up.
At least B12 is relatively cheap.
I get my B12 every three months, for 25years I had them once a month then suddenly I was moved to three months and told that research showed that it was no need for monthly as that amount was more than the body needed, that was about 20 years ago and I have had my ups and downs health wise, at the moment I an having infusions of toccilizumab for Rhumatoid Arthritis, and after I have it my white cells plummet, so much so that my GP phoned on a Sunday to tell me not to go for my infusion the following week, it takes 6weeks for my white cells to pick up then I have another infusion and on it goes, I feel so tired after it and have asked if I should have my B12 monthly but have been told my levels were ok, so today I have sent for superior b12 tablets that dissolve under the tongue, fingers crossed they will help.
I've been on four weekly injections of cytamen for 43 years and when the doctor moved me on to the neo-cytamen 3 monthly cycle I found I couldn't cope that long and insisted I went back to the original - and I'm still on them at the age of 74...
Wow I am surprised that so many people feel the need to have it daily. I'm giving myself twice a week and thought may be I am one of the few but that's how much my body needs it to function without nasty headache or suffer from incontinence.
I'm prescribed once every three days but feel nuts by the third day
Interesting, I thought I was the only one taking/needing shots daily.
Once a month would certainly be an improvement
I get my injection every three months and the nurse refused to give me it today because I have not had a blood test for 18 months. No letter arrived to remind me it was due. Whose fault is this and why can't I have it anyway. It is already 2 weeks late. I am falling asleep during the day which using my computer or watching TV because I have no energy to do anything.....ever. Nerve damage already done. Took 2 years to see a neurologist. The waiting list is really long. I now have ashma and arthiritis. I seldom go out.
Although I do get migraines with the stuff I'm injected with at my GP
I suggest we all hustle over to this website and sign the petition to make B12 injections available over the counter in the UK! They have over 4,000 names - but are still short 930 signatures.
change.org/p/ian-hudson-ple...
I have hustled over to the website and have signed. I need help but my GP will not give it to me. I need to buy it over the counter.
Have my b12 injections every 8weeks but after 3-4 weeks I really start to flag.
I know I need Hydroxocobalimin..not methelcobalamin...and if I don't do it daily my immune system becomes compromised.
I sometimes forget, or am busy and I suffer the cones sequences.
An expensive regime funding it in between the gaps of the NHS. And v. Difficult to get. My diagnosis was not until I was Very ill. Perhaps if it was sooner I might not have such a constant need.
when I inject every other day I get my normal life back.
about every six weeks would be better.
I am just not functioning mentally or physically with only 2x a month and everyday dissolve pills..I am miserable and feel like im loosing my mind. But I know I have to wait on more blood work to see my folic acid and other things..im so sad I want to be normal again..
I usually inject 250 mcg SC about every third day, my body tells me when I need it. Using methylB12 purchased over the internet. I checked the every other day option for frequency.
Could not go a full week while getting 1000 mcg cyano from my doctor (I'm in the US), symptoms start to return after 3 - 4 days. Tried supplements, SL pills, and patches, but they don't seem to do much. HydroxyB12 nasal makes me very jittery so use it rarely.
I think injection frequency depends how far along b12 def was at diagnosis, and perhaps what could have triggered the PA comes into play as well (taking PPIs or H2 blockers, thyroid/autoimmune, celiac disease, gluten sensitivity, H pylori, or cause unknown). Think I was stage 4 at diagnosis, so methylation cycle and/or liver likely got damaged, so frequent smaller B12 doses better as my body can't store it.
I have answered 'every 2 months' as every 3 months is not enough, but having said that I have not felt really well for years. My diagnosis only came about when I was pestering doctor to,send me to hospital as I lost my hearing in right ear for no apparent reason. He telephoned me to tell me he needed to see me urgently as I was B12 deficient and that he must have been on holiday when the report arrived and he missed it. He also said I had this problem for a long time. Sorry this is so long but I also feel isolated as although my family are sympathetic when it is obvious I am not well they do not really understand and sometimes I think they feel I should be more positive and that will help, I wish. I changed doctors by the way after this little lot but although my new surgery is better in many ways they are very non committal when I mention that I would like more frequent treatment. They all really need a big push from above. My opinion is that if the doctors or their relatives had the problem their attitude would be very different. Rant over, sorry folks but thanks for listening.
I have mine every eight weeks, but sadly only feel right for 4 so I feel I would be better with one a month.
i'm lucky to receive my injections through my doctors every 4 weeks, however since I've started working full time I've noticed i need it more frequent than every 4 weeks.
Self inject everyday at the moment as unable to walk unaided at the moment... Fingers crossed!
I was diagnosed 12 months ago and started ,afterthe loading doses, three monthly injections but soon found I needed it sooner. I am now having it every 10 weeks. (agreed bythe practice nurse) but the last two occasions I've crept into the surgery trying to make myself invisible after only 9 weeks. I fully expected to be ordered out of the surgery but was lucky I received it with no problem. Next time, if necessary,I'll sneak in at 8 weeks. Too afraid to ask outright in case I am refused - no room for manoeuvre then! My main problem is memory and confusion. My level at time of discovery was 45ng/L and have not read of anyone being that low. I only hope I've not got permanent damage. I also take 2000 mcg cyano sublingually daily.
I feel I need them twice weekly. I get them every ten days and no more. I feel my neurological issues would heal best and my mental state would balance if I got them at least twice a week. I react badly to tablets and spray so am hesitant to supplement on my own.
I've been on four weekly Cytamen (Cyanocobamalin) injections for 43 years but after a long struggle with my GP I now manage to get the odd three week jab done when my exhaustion levels are getting high. He was of the opinion that "one size fits all" - he prescribed every four weeks and that was it, without taking into account my height (6' 4") weight (12st 5lbs) metabolism or age (74) and just laughed when I described my symptoms.
I now have Type 2 diabetes and he's put me on the maximum dosage of Metformin which, according to the pharmacist (and manufacturer's blurb) has an adverse affect on B12 absorption - so I see another battle looming 
i have b12 shots every 3 months i feel really tierd all the time and keep falling asleep i asked if it could be my b12 low i was told no so i said when do i have a blood test to check it to see if its ok as been over two years know i was told no blood tests are needed as the surgery policy not to test for b12 as the doses where all any one needed are they right i feel that they think im stupid have i the right to have a blood test to check it can any one help
Monthly. I also take Folic Acid Daily, does anyone else have this combination? Thank You...
Thanks, that's interesting to know!
Once a month and they are only giving me i once every six months now after getting it every 3 months for 5 years. It was a whole year before I got the last one.
Weekly for cyano
So drained!
I was just wondering if anyone knows if the injections given at health centres are the same strength in different countries? In Spain once a month is normal practice but I think I read in UK injections are stronger and that's why it's quite often every 3months. Don't know where I read it .
Iv felt different for along time but didn't know about pa even tho iv had b12 for over 30years .I, thought it was just depression and anxiety ,I'm goin worse last few month but doctor just ups my venlafaxine and won't discuss the link my eyes r now more yellow and no interest in doin much no more .I had my bowel removed due to it bein twisted and dangerous but only got pernisous aneamea after bein really I'll at age 8-10year old but had my bowel out age 3year old x
Ment put gangarene not dangerous soz x
If only life was this easy 🙁
I also self inject fortnightly as they will not increase my frequency and again, tried to fob me off with antidepressants. My usual place for B12 has stopped shipping to the UK so now use vetenary grade B12. It's shocking to have to resort to this but it is much cheaper and is still FDA approved. My 'horse' will feel much better!
Every 3 to 4 weeks
Hallo everyone, I am new and I am from eastern Europe, sorry for my English. I was diagnosed with peripheral neuropathy because of B12 deficiency-50 pg-ml at the beginning of 2017-strong needles in foot and great tiredness. The doctors don't know much about B12. They gave me cyanocobalamin shots 5 days than 1 shot once a week. I began to reed in internet and till now I got more than 150 self injections-cyano, hydroxo and methyl - 1 mg-1ml. I take sublingual tablets methyl every other day. Now I am much better but there will be a long way. I am now 58 years old. Believe in you, not in doctors ! Be happy !
I self inject every 2nd day. If I miss an injection, the symptoms (anxiety & a feeling of sadness) return by the third day and take about 5 days to return to normal (which is not completely gone but not debilitating)
My doctor prescribed 1 injection every two days until there is no improvement. He said it could take 3-6 months and I am nearly 5 months in. I am still seeing some minor improvement with only tinnitus constantly there. I discussed with my doctor trialing three days or more but, so far, this is not working.
To be honest, I would much rather have to have an injection every second day for the rest of my life than return to "pre-treatment".
How’s treatment I’ve bad neuro issues and now SI daily
Progress is good. I changed to daily too. I am still improving very slowly but I guess this came on very slowly.have your neuro issues improved since going daily?
I’m no improv I am 3 day in of dsily am feeling horrific I’m wondering if it’s something else and not b12 my ear ringing has increased I have burning arms a fuzzy feeling base of my neck belly feels off not sure what to do or think no more only that when I didn’t inject I had this now I injected 3rd dsy im same no better worse a little and very scared my ears are hissing and rumbeling
Really sorry to hear that Milley2. I remember that feeling of being scared. I initially got huge relief from the injections, stopped, went down hill fast, then went on to every second day. From then on I got gradual improvements.
Presumably your doctor is looking in to all the other options. In the meantime I would persevere with the injections (you can't overdose on B12)
I see that post of ur wad 2 years ago so you still unwell with it ? 2 years on ? Where do I inject ? How often still ?
Yes, I'm still unwell with it two years on. I don't think I will ever be 100% but every time I think I have got to as good as I am going to get, I look back over the last month or so and realise that I have improved. It took me at least 16 years to get to my worst so it could, conceivably, take 16 years to get better. I inject every day in alternate thighs.
I had been taking it for nerve damage every other day. After a few months, I moved to weekly injections of 1000 hydroxo. But I felt very bad at the end of the week. So I changed to every 4 days. It seems to be OK for a long time. But I discovered that when the days are more intense physically and emotionally I feel very bad on the last day. I really do not understand why some people are OK with injections every 1-3 months and other need it much more often. We all have PA here.
I have a thought that PA is gradual. So some people absorb some B12 some maybe not at all. And also it depends on our diet. I, for example, do not eat food containing B12 at all. I wonder if there is a relation between diet and frequency of injections. Are there any scientifical papers?
At the moment back on every other day as still have many symptoms. First loading dose November 2018. First b12 serum level 106
Is this on Hydroxocobalamin?
I voted every other day but I'm actually every 3rd day, sometimes every 2nd if lifes a million miles per hour..
I voted that I take it weekly, but I actually take it every four days. That option was not available
Every 2 weeks
Recently I have tried going from EOD (a year under the belt) to every three days...horrible. Within just 12 days I felt bad enough to change back to the EOD regimen.
My initial diagnosis of B12D was due to foot drop/migraines and one injection via the GP every 8 weeks just about kept it okay - I'd be struggling the two weeks before. But then I crashed completely from the anaesthetics from major surgery and nitro antibiotics afterwards which left me unable to walk unaided. I'm a year into daily injections and improving and will just have to keep going until I'm well and then can try to reduce. I used to think people SI-ing ED were nuts - and now I'm one of them! Needs must...
Every third day, but that isn't listed!!