I'd like to share my experience of PA with you all, to see if anyone feels the same as I (and to prove I'm not alone in this... )
Firstly, I'm male, 58, have 3 grown up children, 3 active grandkids, work full time and I'm a carer for my disabled wife. I was diagnosed 13 years ago (completely by chance) by a lovely doctor who actually knew something about PA. I'd experienced some of the classic symptoms (fatigue, confusion) and some interesting nerve pains (shooting up through my leg to my toes). I'm on an 8 weekly injection cycle that seems to work for me, and I also take multivitamins and folate.
When I have my injection, it seems to take a while to kick in. I have friends that have their injection and they're bouncing of the walls with energy - not me. I have my injection and for the next few days I'm wiped out - it's almost as if my body goes into a "recovery" period. Once the B12 dose does kick in, I feel normal - that's it. No excess of energy, just normal.
I then pootle along for the next 5-6 weeks feeling ok. By the 7th week I start to flag (although this can be a bit earlier), but I'm still able to cope but I start taking sublingual b12 tablets at this point. I do however, get more emotional during the last couple of weeks, and I've noticed that my anxiety levels also seem to increase. Also around week 7 I have to give myself more time to think to avoid getting confused.
Just before the injection is the hardest time. I'm easily overwhelmed by things by this point and I have to give myself more time to recover from any exersions.
I know everyone is different, and I would say that my PA is quite well controlled - but I'd like to hear from anyone who's had a similar experience.
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hypervox
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Hi hypervox, I'm also 58, have a physically demanding job and was on 8 weekly jabs. I felt as though I was starting to go down hill around week 5 or 6, then seemed to take nearly a week after my jab before I felt any improvement. GP refused to increase the frequency so I plodded along like this for several years. Then during covid lock down, jabs were stopped for several months. By this time I was really struggling.Although my jabs were reinstated, I was, in my opinion, playing catch-up.
I had been considering self injection for some time prior to this and finally decided to take the plunge.
I started SI on alternate months to my prescribed jab so now on monthly jabs and feel much better for it.
I was very nervous and shaking like a leaf the first time I self injected, The jab was actually easier than I had anticipated. I didn't notice any benefit straight away but had a strange liberating feeling as soon as it was done, it's hard to explain. Possibly relief that it went well, and possibly because I was now in control of my own health and well being.
It's been 2 years since then and I now feel better than I have for years. Not perfect but feel as though I have the energy to deal with life head on.
I'm thankful to this forum for the shared knowledge and experiences which has helped me take control of my condition.
I relate very much to your cycle of decline. I had the same experience on 12 weekly - ending up very nearly at square one - persuaded my GP to increase to 8 weekly and experienced the same decline that you're describing. Gave up on the medics and now self-inject every other day. This has caused a very significant improvement in overall health and energy. There's a way to go yet but I actually feel a little optimistic. Apart from the medical establishment, that is.
Relate to all you say and I self inject every other day and when I am physically very busy I self inject every day to cope.
After 4 months plus of EOD jabs I am at least able to function without “dragging” myself through the day but the brain fog is the hardest and I still struggle to find words and if I don’t wait and speak too quickly a funny alternative comes out. For example when loading rubbish to go the recycling I asked someone to bring me the microwave instead of the wheelbarrow! 😂🤪
I really have to work hard to listen and to remember names and details but that’s better when I physically rest.
As Orchard suggests more frequent N12 wound keep you in a more even functioning keel AND more importantly ensure continuous repair and thus a more speedier recovery and better quality of life.
I had a very similar experience to you, feeling everything declining about 5 or 6 weeks after the injection and leaving me unable to function properly for about 2 or 3 weeks every two months. I now self inject a couple of times between each GP injection, so have an injection about every 3 weeks. That keeps everything fairly stable for me.
Hi hypervox, Thank you for sharing your treatment schedule. Sounds to me that you could just use an injection more frequently. Like everybody else said I think you're just not getting quite enough B12 and that if you just increase your injections to once a month or maybe even twice a month you might find that helps you immensely. I started with once a month jabs but that didn't seem to be enough, and then I tried every week and then I tried every other day. Now, I pretty much inject every day. There's days that I don't, but for the most part I'm a daily injection person and I still have a long ways to go with my symptoms. My feet and my legs have been bothering me quite a bit so there's been times that I injected twice in one day. Several times. I have never had a boost of energy. In fact I hardly feel when the B12 is taking effect it doesn't happen fast for me. But I also Don't give it time to wear off either.
I went a long time untreated so I think some of my stuff is irreversible. You say after 5 or 6 weeks you start feeling like it's wearing off. You might consider injecting every two weeks or once a week or whatever, but it sounds to me that you would benefit from self-injecting. It is very liberating like somebody else said. It gives you a feeling of control over your own health. It's really a strange feeling to explain but it's a good feeling. Good luck to you. Thanks for sharing.
I was having shots every 4 weeks but after 3, my toes would go back to showing signs of nerve damage. I switched to every 3 weeks and that is much better for me. It sound like you would greatly benefit from having B12 more often. I would try a schedule that avoids a slide down to feeling terrible before your next shot.
You have described my experience exactly. I started out at once a month then they upped it to EOW. Even though I inject every other Monday it wears off and I get those same issues you described.. I am in the US so my B12 is by prescription only. I ordered some from Germany as a back up . I broke into those yesterday and did an extra shot. I feel much better today!! It usually takes a couple of days to feel it but I'm already better. I never have that rush of energy as some get, like you I am better but not energetic after. I am going to try the weekly instead of EOW just to see how it goes. You might want to try an increase to your dose frequency to see if it helps. It seems the more B12 I take the more I need.
I know what you mean about the more B12 I take the more I need. I'm currently understanding that as the underlying B12 deficit that has built up over many years. The first clinical sign was there 8 years ago - macrocytosis- but was ignored by GP. What that means to me is that the macrocytosis had been developing for years before that. With possibly 20 years of deficiency my body must be soaking up EOD shots like a sponge.
Thats interesting. I I have macrocytosis too. I was diagnosed 20+ years ago but did not treat it properly. I wish I had! I tried oral B12 instead of the recommended shots. So, you're up to EOD. I may be there soon, just upped mine to weekly from EOW.
I think that macrocytosis is an early warning of B12 deficiency/PA. I wish it had been picked up in 2015.I'm about to go on to twice weekly. The experiment continues😊
I agree with others. Do more frequent injections. What you think is enough might not be enough. You can't overdose on b12, as long as you don't have any existing kidney or liver function problems. Start doing more frequent injections for about two months and see how that changes things. Do EOD. It might make your symptoms stabilize and take your energy and well being to a new level. It's worth a try.
I tried to space out injections and just couldn't make any progress that way. My symptoms would start to come back. Now with EOD (with Hydroxo or daily with cyano), I'm able to actually become more physically active w/o much set backs. Just did Patagonia, 50 miles (12 per day), but that took 2 years of EOD injections. I don't have the back pain etc.
I can get exhausted and it feels like a b12 exhaustion. I still get some brain fog, but that's slowly getting better.
Also, beyond your question, but some additional things I did to help with brain fog and energy after hitting a wall with some of the symptoms, is B1 (high dose 250 mg Benfomax). WARNING: high dosing b1 must be done properly or it depletes other vitamins required for b1 metabolism. I bought the guide on how to do it from : eonutrition.co.uk/
I have no affiliation, just found the information to be founded on medical science.
This is a youtube video that is just interesting about how b1 deficiency can cause the body to use poor metabolic pathways: youtube.com/watch?v=m3DopqT...
B6 - 50 mg P5P (brand name: Pure)
B vitamin multi w/o b6
magnesium glutinate 800-1200 per day. (400 mg 2-3 times a day)
2.5 mg potassium (staying at or below the daily limit as too much can not just be toxic but deadly)
The high dosing b1 helped a lot, but alone it is not enough, I must do regular b12 injections, especially if I maintain a physically active life. Interesting enough it seems like the physical activity of walking, hiking, mild biking helps with metabolism of b12 and other things.
Well, it's not what works for everyone but it's what I do.
Reading what everyone on this forum shares confirms for me that I and everyone here are conducting a very significant and important experiment in how to treat PA. We really are the experts. No one else is.As a long-term B12 deficient sufferer my strategy for this year is to flood my system with B12 to make up for the past whilst my kidneys can deal with what may be a stress. I have to remember to drink lots of water to help my body cope. In the new year I'll review and assess what next. I quite like being my own experiment😊 because I'm in control.
I like experimenting and being in control of my health too!! After 38 years of misdiagnosis, it's nice to finally have control over what doctors messed up in the first place.
I can totally relate to all of what you experience. I SI once a week as this keeps me stable. Have you considered SI? Sadly I, and others like me can't rely on the NHS to give me enough B12 - I'm assuming you are in the UK?
Yes I'm in the UK. I'll be honest I wouldn't even know how to start self injecting. I've got so many questions, for example are you supposed to let your doctor know? where do you get everything and how do you do it?
SI is intimidating at first. There are so many knowledgeable folks on this forum to guide you. My go to for info as been wedgewood but there are many willing to advise. healthunlocked.com/user/wed...
Hi - lots of great replies and I agree that it could be helpful to increase your dose. I went back to loading doses and the benefit was quite unbelievable. Quite recently, after having Covid, I have been self-injecting daily.
The other part of your question - feeling after an injection. I don’t notice a difference. I notice if I haven’t taken it and a benefit after I get back into a routine if I’ve let it slip. I get tingling and then realise I’ve missed a day or two.
Agree with everyone else that it sounds like you need to increase the frequency, I used to feel like you when I was on 3 monthly and 2 monthly injections, now I’m lucky enough to get them every 4 weeks (we got a new practice nurse who was happy to change them) and I don’t experience the dip at the end anymore.
I’ve never felt increased energy levels after a jab though, it just keeps my energy levels from plunging, there’s no uptick.
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