In the beginning, I would like to say that I am very grateful for this forum and I wish everybody all the best and the respect and appropriate therapy they need. I feel pretty well with my self-made regimen (thank you guys for your assistance), so, answering this question shouldn't have the number one priority (I just would like to know).
Due to neurological symptoms, I self-injected every other day for the last 10 months or so (the diagnosis PA was made in July 2019 and due to idiotic instructions of my then GP my therapy was interrupted a couple of times after the loading dose, so I better chose to self-inject).
In May I decided to expand the time between injections from every other day to every third day. That didn't work for me - slight tingling in my face and my very fingertips returned, so I went back to every other day injections. In May, I was more successful with another attempt, and I felt well with three injections per week. (Mo We Fr).
One and a half weeks ago I tried once more to reduce the number of injections to 2 times a week but again I noticed a slight tingling in my face and fingertips. Now I'm back to 3 times a week. Maybe I am either very sensitive and still really in need of these frequent injections, or I am just hysteric.
I know that it might need some trial and error to figure out what works for one personally. But did any of you guys have similar experiences?
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Lunario
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If 3 a week keep you functioning and in less pain I wouldnt change a thing. We all seem to want to have fewer injections.
I'm in a new regime of one every 6th day after a year of 2 weekly. I lose 2 days around an injection at times on the dat or day after. If I didnt i would try more. We are all different with different symptoms and familiar symptoms. All use the b12 at different rates and excrete it at different rates.
So stick with what is working and dont worry about how often
Thars my aim ...just to function as best I can with as little pain as possible.
My husband injects insulin 4x a day to keep well . No way could he reduce that. Or indeed is encouraged to do so as we are by doctors. He had a rocky road at the beginning and will not change the routine now .
Take card and keep doing what works for you
Hi Lunario.yes I’ve tried to reduce a few times from alternate days to weekly to every third day and no success I very quickly get ill again and it really does ramp up my symptoms so that when I do increase again the pain in my feet and toes is worse and I stagger like I’m a drunk with no co ordination till I settle down again usually around the third shot,I’m not doing this anymore now for at least a year,I’ve tested positive for p.a and I know ive had this since childhood looking back.
I think we all want to reduce he frequency of shots but it’s just not worth the consequences sometimes.Id say you’ve tried your best so go back to your normal and maybe try again in 6 months.your definately not hysterical just human.take care x
Thank you very much for your quick reply. If the cat did not demand attention I would have answered sooner (By the way Nackapan - if that's your cat in your avatar picture, our kittens could be siblings).
Yes, I think both you are right; patience with oneself is obviously my lesson these times. I will wait and see, and maybe one day my body will agree with fewer injections.
I kind of thought so but It's good to receive your affirmation. 🙏 and I hope you will cope well with your regimen.
Another cat lover.great . I've 4 black and white cats. For sine reason they are overlooked at charities ad areblack ones. I have 2 others as well😺😺😺😺😺😻
Someone told me that the reason black cats have waned in popularity is because it is more difficult to get a detailed photo of them to send out on social media - how sad is that ?
I'm on 3 a week too. I can go a 3rd day between injections but I would not leave it any longer than that yet and if I have a busier day or do more exercise then I struggle. I've been on this regime for about 10 months too.
It isn't great to rely on injections but a part of my getting well has been trying to accept what is happening and find peace with it.
My personal experience has been that having found the right injection frequency for me (twice a week) I need to stick with it.
I’ve tried to go a day or 2 longer, I’ve tried going weekly but with daily tablets and/or sublingual sprays. I feel ok for a day or 2 and then symptoms start returning and the worst of it is that it then takes at weeks of twice weekly before I feel ok again.
So I’ve learned my lesson and no longer play around with injection frequency.
My situation is very similar. I went from every other day (for 8 months) to 3 times a week. I have now been self injecting for 10 months and every time it is time for a shot, I tell my husband, "Maybe I should try going longer . . . " and he reminds me that it always goes terribly when I try to decrease the frequency. So I stick with it.
Even with 3 times a week, I still have frustrating and uncomfortable sensations (tingling, quivering, vibrating, "electrical current"), and they seem to be worse when I am under a lot of stress and/or not sleeping well. I also have hypothyroidism, and things seem to be worse when my thyroid levels are off.
I, too, sometimes feel "hysterical," but I think that is mostly a result of years of gaslighting from the medical establishment, doctors who wouldn't listen and misdiagnosed me with mental health issues rather than PA and B12 deficiency. It was their delay in diagnosis, followed by their inadequate treatment, that gave me these neurological problems in the first place. So no, we're not hysterical, and I think we can help to heal some of this trauma by learning to listen to and trust our bodies. This forum has helped me a lot, to stop feeling "crazy."
I self injected every other day for over 2 years, improving in the last few months to an extent where I reduced this to one every three days.
At first a bit of a struggle to adapt, but have now been okay on this for about 9 months. I won't reduce this again until I feel that my symptoms have continued to improve. It is not worth the set-back, the recoup or the disappointment.
I think I will know if and when, have adapted my life as much as I am able, and now willing to accept that this could be it, while continuing to hope for more. It is easy to tell yourself that this is what you've done - but the reality of this acceptance-without-defeat can come some time later !
I have yet to have a symptom-free day, but have a better understanding now of how to reduce ill effects, how to stop myself overestimating what one good day signifies, when to keep a day clear of anything and anyone- to disappear if necessary.
Trying to get others to understand it and recognise that it's nothing personal... that's not quite as easy, and may take another 5 years' work !
This sounds very similar to me - I started injecting every other day in Nov 2017, then under pressure from the Neurology consultant (to 'wean myself' off injections), I reduced it to every 3 days around a year ago, planning to keep reducing if possible, but by the third day I'm always seeing a slight return of symptoms. I keep feeling almost guilty about not being able to reduce the frequency further, but I really don't want to have a crash. So I also keep telling myself not to feel guilty!
I started working on reducing my injections in part because of a very nice oral medicine consultant who was worried about my frequency.
We have to keep reminding ourselves that the purpose is to get as near to our old life as we can manage, to control our symptoms- not please consultants, who will never truly be happy with us unless we can survive on 1 injection every 3 months !
Not sure I could survive, but even if I could, survival is not all I'm expecting.
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(By the way Nackapan - if that's your cat in your avatar picture, our kittens could be siblings).
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