We recently reported that the molecular analysis of the stool samples taken from those patients who need more frequent injections differed from those who manage perfectly well on one injection every three months. We also stated that the bacteria analysis was due any day.
Last week we received the full report from the laboratory who carried out the analysis of the bacteria of the samples to determine whether there was a similar difference between patients who need more frequent injections than others.
Well, the report stated quite categorically that there was a difference in the group who need more frequent treatment than the other two groups that were analysed. This now means that the foundations are laid for further, more intensive research into why patients require a treatment regimen based on their individual needs.
A meeting of the researchers and representatives of the society will take place in the next few weeks.
Many thanks to all who provided samples and for being so patient while waiting for this first phase to take place!
I inject B-12 about every 2 weeks because my body is full of pain around then, and I’m jittery and confused in the mornings.
The B-12 makes the muscle pain just a minor nuisance for another 2 weeks or so.
Ho can it be I had a schillings test I am absorbing intrinsic factor yet I am B12 deficient something is wrong somewhere I wonder if others had found the same I also have folic acid 5mg each day, but I feel tired after 6 weeks -I have B12 injections between 4-6 weeks.. Research is definitely needed!
Wonderful, wonderful news – we are making great strides forward to facilitate greater understanding from the NHS.
Interesting research!! I have familial pa. I get 1 injection per month. Only b12 level and a MMA blood test done.
Family doctor won’t pursue my daughter’s condition. She is in the middle of a relapse at the moment with blood hemo level at 88 followed by related severe sympton. Can I ask if we can buy our own B12 jabs.
You can buy a b12 dual coenzym Liquid From Nature provides.com. 2400mcg thats suitable
A good step forward.I have to Self inject every week or 2 as doctor agreed to increase injections to 10 weeks from 12 but said wouldn’t be able to get any less than that.Got so bad I couldn’t cope with everyday things and spent afternoons back in bed.
Here in the Nederlands i inject every 48 hours 1 child of mine 2 times a week, 1 child every 72 hours and 1 child every 48 hours. Ime so glad we inject our selfs, cause we canniject b12 when needed. Therefore my life changed significant
Linda we all feel the same,it’s sad the Government decide when we have our injection it shocking really. It’s down to cost not need.
In Canada,Newzealand and Australia they have the injection when needed. Although they pay.im sure we would pay too knowing how awful we feel waiting for our next injection.
I’ve resently tried B12 spray which you spray directly into your mouth under tongue I’m not so tired. Beryl
Having to inject every other day or get sicker. Especially balance gets worse. Great news.
This is news for me. I am convinced I need more frequent injections. I get ill from bad fatigue and jitters about every four weeks. My GP won’t increase my 3 monthly dosage. Can I get B12 and needles to self inject anywhere?
I understand your situation Sammy. I have the same problem. I have resently bought b12 spray from the the herbalist shop. I was told about this by a nurse.you spray under your tongue or either side cheek. This is my second week I don’t feel so tired,maybe you could give it a try.
Beryl
You can buy B12 in the powder form from Oxford Biosciences, it’s expensive but once mixed with saline it makes quite a lot and lasts quite long.
I feel tired all the time and get bad headaches and muscal ache am due for MRI scan .do you think i would benefit b12
This is welcome news. If I don’t inject every other day, and feel confident enough to leave it an extra day, I deteriorate to an extent that others notice. The same is true if I keep to my regime, but am especially busy. So this news is a relief to me and those close to me……. now all I need is an official diagnosis – as I have been trying for over 3 years now. I remain “without portfolio” but getting 1 NHS injection every 2 months.
This is fantastic news!! My doctor won’t act without a consultant say so. I’m stuck on eight weeks as she moved me from four weeks, which kept me just functioning, after my neurologist left and the replacement said “it’s all in my mind, seeing a pretty red liquid makes my brain tell me I feel better.” Shockingly he is head of Neurology, so glad my husband was with me otherwise no one would have believed me. He then told me the damage to my nerves, yes they are damaged, has been caused by diabetes and sent me off for blood test to show this, when this came back clear he wrote to my GP asking for another diabetes 2 hour blood test. This came back as all clear as they have done every time my GP has done them yet he will not change his ‘views’ or my treatment plan. Three to four weeks is what I need but the GP who agreed this has left too. My son has his every three weeks but his GP has just retired so we are worrying the GP’s left who are treating me will extend his injection period, this will harm him as he had to go five weeks recently and could not cope at all. He was diagnosed when he had heart failure two and a half years ago when his B12 levels were almost non existent. Lucky for him the nurse he sees knows how this helps and is not recommending he goes for a ‘review’ with a GP so she can follow what is on his notes at present.
My daughter was diagnosed with almost non existent levels too but was only given six injections and now ever 10 weeks, have got them moved from 12, she has given up with the GP and is now waiting to see several different consultants for symptoms she has but the GP won’t ‘link’ them with the lack of B12 as it has gone up above 180!!
Being able to give evidence to GP’s and other health professionals to treat us as individuals will help us to have the good quality of life we are entitled too. Here’s hoping this break through will be acted on quickly. Well done PAS for being there!!!
I am lucky to have a supportive GP, and when I got a dip with 3 and 2 monthly B12 allowed me to go on to monthly injections. I self inject for convenience and because I believe that the nurse’s time is much more costly than the B12 [maybe someone knows these costs in the UK?]. As the NHS struggles with funding and staff I believe that it should be the norm for most people with PA to self inject – don’t most diabetics?
Your story similar to mine but at present the practice doesn’t seem to offer a self injecting regime altho one nurse has worked in a practice that does. All the nurses and HC assistants seem to think it a reasonable and money saving plan. Maybe I need to approach my Gp about this again and see if she feels it worth taking up with the practice manager.
This is all very new to me. I have just been diagnosed with Vitamin B12 deficiency.
I have been prescribed with the 6 injections over 2 weeks. Thereafter every 3 months for life. Pernicious Anaemia was not mentioned, but is lifelong treatment an indicator of it?
Same for me; I believe that if the injections help then this is positive proof of PA.
I had the 6 jabs really helped , and have had 3 monthly jabs seen to be ok for me , I went from not being able to cycle for 20 mins before being diagnosed to 1 hour 30 mins what a difference it is
I am a woman 68 yrs old. 40 yrs ago I injected b12 @ least once a week & felt renewed. Then in 2005 my lg colon punctured @ presented gangrene, ecoli..etc. from 2005 t0 2006 100% of lg colon removed, 10% sml colon @10% anus.
I was kept under induced comas until at last I was “bag free” & try carefully to tend to this dibilting disease. I do have diagnosed PA & currently inject b12 every 4 weeks. Feel somewhat better but this is an ongoing fight to keep up strength & control of many aspects in health. Thank you for this great hope for all who suffer PA with no help.
Have had my 6 forced injections. Had feet swelling so Hospital GP ordered more blood tests.
Results showed neutrophils were even lower than 5 weeks ago despite the 6 injections.
When B12 deficiency was diagnosed my neutrophils/white blood cells were far below the normal range at that time.
My own GP has checked he most recent results and has passed them as satisfactory. They are more than 50% BELOW the lowest figure in the range. Below range is clearly highlighted on the actual test result.
The problem is that time is short for GP’s. He obviously has missed the highlighted area.
B12 level is now 180, so that’s good. Should keep me going for 3 months.
I am pursuing my results with my GP soon.
My PA symptoms started immediately after an op for a broken leg & ankle. I believe that the anti-biotics may have messed up my immune system. That was 3 months ago & my GP has been useless up until 2 weeks ago by which time I am pretty messed up.
Injections start in two days.
NHS systems suck.
Good luck , I really kicked in my training after starting mine , and have not looked back
I was diagnosed with PA about 22 years ago and have inj every 3 months but have recently been thinking I need them more frequently as have a bout of stomach cramps and diarrohea in the past and again this last week on and off. Not due for nearly a month for next inj but have just discovered this site and have realised that my tinnitus, balance and other things I have, can be attributed to PA…wow!
I have had pa for 5 years. After a fight with my doctors which took 2 years they finally agreed injections every 2 months. This is still not enough but they are unwilling to give them any more frequent. I was advised by my doctor recently to take folic acid, but on researching this i have discovered that b12 and folic acid can react to eachother dependant on dose.
I am looking to start injecting myself on a fortnightly basis and would like to know what is a safe level of b12 and folic acid i can take. My doctor will not advise ne on this!
I would be very grateful if you could help.
What happened to this research, is it still on going ?
Yes, still on going. There was an update at the last PAS conference
I just was recommended this article by Google and am curious as to what has happened with this interesting news regarding the stool samples. I have PA and am SI every week when I can afford to purchase the B12 and supplies.
A link to any further results from this research would be great if you could.
Thanks in advance.