My, but that's a long headline - sorry! Someone gave me a link to a great pie chart showing how satisfied people were with the frequency of injections they got. I've been right through all my posts and can't find the damn thing. I THINK it was on the PA society website, but I may be wrong. I certainly can't find it there. I desperately need it to present to my doc tomorrow morning to try and convince him to give me more loading shots but I can't find the damn thing!
I don't know if anyone's still awake on here at 12.30 am but if you are and you know where this is, I'd be really, REALLY grateful to hear from you. I'll check again first thing too, so if you can get to it before 9.45 am I might catch it and get it printed out.
P.S. I'd be really glad to have it again regardless, so please let me know where it is anyway if you see this - thanks!
Written by
Chancery
To view profiles and participate in discussions please or .
Do you mean the "How often do you feel you really need your injection" poll which is on this forum? Go to the home page that's entitled Pernicious Anaemia Society, scroll down and it's between the latest posts and the new members.
Thanks, Engels, Marre provided a link and I was lazy so went there first. I think yours is indeed the same one though - so kudos to you for being first in!
Don't ask me how I found it, I could not repeat it, but here it is:
Yay, Marre! That's it. I have a suspicion it was you who recommended it in the first place, but it's too late now, the doc has spoken and he isn't going to give me any more injections other than my bi-monthly maintenance - and God knows how long I will be allowed that before he gets cold feet and pulls them.
We had a long set-to this morning, me armed to the hilt with printouts and him looking tired and fed-up. I think he had been tipped off by one of the other doctors. I'd mentioned to her that I was going to try and win him over. Ah, it pays to watch what you say in doctors'!
Anyway, after trying to sell him on giving me injections at least for the 'cure' times listed in the latest BMJ article (6 weeks to 3 months), and offering to inject myself, he got quite stroppy about the dangers of us "colluding" and going to the "dark side" (his favourite term) and we ended up doing a pro and against debate. His against debate was basically that B12 was a known placebo 'drug' and I could easily be a placebo victim and my TN wasn't even proven (TN is never proven. It can't be unless you can find a compression on MRI, and most people don't - doesn't stop the pain though.) In short, we knew nothing, so it was all hypothesis. There was no rational argument for more injections - end of.
Eventually we settled on me getting my blood retested in 4 weeks. If the B12's dropped drastically from the high it should be, or shows any signs that my body is just dumping it or using it at an alarming rate, then he'll consider more frequent injections. If not - then not. No more than bi-monthly. I tried every sane argument but no joy. It was horribly depressing.
But, Marre, I'm sure you said your body couldn't retain B12 - am I right? Why is that, exactly? What part of your condition makes it 'drain away' as it were? And does this earn you any more injections as a result?
Oh dear chancery, you are expecting far to much in every way..I was given once every 2 months B12 after diagnosis from neurologist of sub acute deg of the spinal cord. I am text book stuff. Was by then already 4 years on once every 3 months maintenance ( but serum B12 dropping every year to nearly def again: 2005(Dec) MCV 92.6 Hb 138 serum B12 230 ng/L = 170 pmol/L.) and initially being diagnosed with low serum B12 and macrocytosis, (2002 Jan MCV 105.5 Hb 132 serum B12 86 ng/L = 63 pmol/L) so all the blood markers of B12 def/PA (also blood film showed all the markers of B12 def/PA), so no problem for me to get B12 injections, more a concern I may stop as I self inject now. Then last year (and I was urged much earlier on to see a gastro, but feared that appointment) I saw a gastro had colo/endoscopy to rule out all obvious reasons for B12 def, and having a 30 year diagnosis of IBS getting worse, I got diagnosis of bile acid mal absorption, must have B12 injections, terminal ileum is smooth (an onother, known, obvious reason to have bad uptake and or recycling of B12), so I have loads of reasons medically to be on B12 injections, no medic has ever tried to get me off B12 treatment, all know I add to my NHS allowance and all know my blood test stay in the " normal" range for everything now with what I add. Many in my family are on B12 treatment, starting from my gran mother, to both my 2 kids, so something genetic going on. All specialists I have seen say we do not know, so much is un known, but you need B12 and we are stuck to guidelines.
No I do not get more than the two monthly B12 for neurological involvement from NHS, but then they all know I've started adding since 2006, and I've never asked what I'd get if I did not add myself, I'm not going to try that one for sure, I am not to well currently and afraid the stuff I take for bile acid mal absorption (known to reduce uptake of B12/ folate other vits) is draining me of more B12. Will cross that bridge next year.
Your situation is very different as you have TN, not an obvious B12 def, no blood condition.
Your B12 treatment was to see if it helped your TN, I thought, you are now hoping to find a reason for needing B12, but are not able to say currently if you benefit from it, I can not help you with that one. I just hope it will help you!
You can but try with your GP, who has been very good treating you with B12 for TN without any obvious reason of a need for B12 blood wise. I expect it is a money issue and they are stuck with budgets and guidelines.
No, it's not budgets - he just doesn't see the rationale for it. Did you never get loading shots then? Were you just put straight on a maintenance regime?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
2 months after loading doses
I hate Covid!
