How long before you could increase the time between injections (for those who SI)?

[BeachArt]

Hi, I have SI'ing for 6 years now. For 5 of those years I did every other day, and every 3 days for the past year. I have learnt a lot about my body, and B12, over those years. I know that if I push myself a bit too much, or drink too much alcohol at Christmas or on holiday (I don't drink very often), I will need a couple of extra jabs. I am lucky that I can work in a job that is quite physical, go to the gym 2 or 3 times a week, and have a 'normal' life.......whatever normal is lol. For a long time that wasn't the case, so I am extremely grateful that I can do what I do. I am eternally grateful to the one GP who knew a little about B12d & PA. And even more grateful to groups such as this who helped, supported, and advised me when I needed it most.

Having said all of that I would dearly love not to SI so frequently. The long term does concern me. Not in the sense of the long term affects, but in the sense of my husband and/or myself being able to administer them, and the availability of hydroxocobalamin in the UK. So, I'm wondering at what point, if any, people have been able to increase the time between injections and maintain their health, and their life, as well as when they were on every other day, or every 3 days. Thank you.

[wedgewood]

I would say when you have had no trace , for several weeks , of any of the Pernicious Anaemia symptoms from which you have been suffering . Then you can consider lengthening the time between injections . If your injections have been close together, then only extend in small increments . . If any symptoms start to re-emerge , return to usual .

[BeachArt in reply to wedgewood]

Thanks Wedgewood. However, as I said, I have been SI'ing for 6 years: 5 of those at every other day, and every 3 days for the past year. So I am more than aware of doing things slowly, etc. I was just hoping to hear from others who started off at EOD and are now weekly, fortnightly, or even monthly, with no negative impact on their symptoms.I don't relish the thought of needing this frequency for the rest of my life, but obviously would if needs be. I would just like to be able to extend the time between jabs over the coming years, and was hoping to hear from others who have.

[wedgewood in reply to BeachArt]

There will be PA patients out there who have so many different outcomes . The variety of experiences is enormous .That’s why it’s so ridiculous for the NHS to have the the one size fits all treatment policy .

[Happysmile]

hi. I’ve not been able to increase from every other day yet after several years and it’s not from lack of trying. If I extend to every three days, symptoms return and if ill, exercising, have alcohol etc, often need more. I would love to reduce the frequency and was hoping this may be possible at some point, but I’m not overly optimistic. I understand fully how you are feeling and hope you manage to increase time between SI, as do I.

[Littlelodge123]

Like you I used to SI EOD for about 4 years. I got my PA dx in 2018 and I’m 57 years old. I moved from that to once a week with no I’ll effects. I have a high pressure job and am active. I’m currently on holiday in Italy and forgot to do my injection before I left and I’m doing well. I also have exocrine pancreatic insufficiency which can coexist with PA and sometimes I’m not sure whether my symptoms are more to do with that than B12. Incidentally I just decided to go from EOD to weekly and did not notice anything untoward so I’m going to stick with that for now.

[jointpain]

Similar to you, I've been SI'ing but only for five years and six days now. Started off EOD tried every week and every fourth day but only able to survive on every third day. GP knows I SI but thinks it's every week or two and still thinks I should see a shrink, and that I'm poisoning myself. All the best.

[MorningMist in reply to jointpain]

Hiw do you deal with your gp? Mine is exactly the same. Makes me feel so uncomfortable.

[jointpain in reply to MorningMist]

I tell them what I want in the way of treatment and medication, I'm always right, and eventually they agree. They are pretty useless in most respects, except they can legally write a prescription.

[MrsTuft]

I’ve wondered the same but I suspect it’s different for us all. Out of internet how ill were you in the beginning?

[BeachArt in reply to MrsTuft]

Hi, I was very ill in the beginning. Although, for me, it wasn't a gradual buildup, it was more of a sudden, major, crash. I had a myriad of symptoms, including severe neurological ones. It was scary how sudden it was and, if I hadn't already known about PA (my mum has it), and hadn't stumbled across a GP at my surgery who knew a little about B12d who was willing to give me a trial of injections, I would be in a wheelchair now, and in a very bad way.

But here I am 6½ years after first becoming ill, and 6 years into SI'ing, I have a happy, healthy, life. Yes, I have to monitor my activity (although I do more than many people without PA), monitor my alcohol intake (which is no big deal for me), and really listen to my body. That last one is a big one: I have learnt to truly listen to my body over the years. I am here, I am happy, and I am thriving. I would just love not to have to inject so frequently in the future.

Much love to you all.

[MrsTuft in reply to BeachArt]

So very similar. I was ‘ok’ on NHS injections about five what’s before a major sudden crash that put me in a wheelchair but I knew what to do. I’m a year in SI ED and about 60% better. I’m encouraged to hear how much better you are. I’ll keep going!!!

[scnuke]

I know each of us have different experiences with our PA journey. For me, I never consider reducing my injection frequency. Before I started my current SI routine, I would have "crashes" on a regular basis, and the misery and recovery time left me useless for weeks. I have been dong twice per day injections for over a year and it is as close to normal as I have felt since I started my own treatment in 2018. I have tried almost all variations of injection frequency, starting with occasional, then monthly, then EOD, daily and now twice daily. I have used Hydro and Cyano and can't tell a difference in effect for me. I sometimes wonder how in twenty years when my wife and I are ninety, possibly deaf, blind, or immobile, will we get my injections, but I will worry about that when it occurs. For now, I will continue my current routine and enjoy the return to a somewhat normal life my injections afford me. As for what happens in the future, Que Sera, Sera. Wishes of peace and health to you

[BeachArt in reply to scnuke]

That is the sort of thing I think about when I think of the future: what if something happens and my husband I and I can no longer do the jabs, etc.Don't get me wrong, if needs must I will continue to SI every 3 days. It's just my preference would be to increase the time between them without any ill affect. But, I am grateful to be in such a good place: happy, healthy, and living a normal life 😊

[WiscGuy]

"So, I'm wondering at what point, if any, people have been able to increase the time between injections and maintain their health, and their life, as well as when they were on every other day, or every 3 days."

I personally think this notion derives from the confusion doctors have regarding treatment of B12 deficiency. I think the basis of the confusion is the notion that B12 deficiency is one "disorder", when in fact it is better conceptualized as two separate, distinct disorders, with two separate, distinct populations (ie, B12 deficiency with blood symptoms vs B12 deficiency with neurological symptoms), as described in the excellent medical journal article, "The Many Faces of Cobalamin (Vitamin B12) Deficiency". These two disorders each has distinct symptoms with very little overlap, distinct diagnostics (lab test results, vs clinical, interview-based diagnosis), and separate, distinct treatment regimens (injections per week for neurological-symptom patients, vs injections per month for blood-symptom patients). Doctors tend to insist that all these patients are grouped into one diagnosis, one with blood symptoms that always are revealed through lab test results, and all these patients should be "weaned" (as the "B12 expert" hematologist I was referred to wrote in my case notes) off B12 to the point of one injection every month or every several months. It seems clear that in practice, for B12 deficiency patients with neurological symptoms who gauge injection frequency by symptom reduction, injections can be expected to be required once a week, give or take a few days.

I am not medically trained and invite correction.

[MorningMist in reply to WiscGuy]

I think that sums it up well. The unfortunate thing about neurological symptoms is that gps can regard your symptoms and need for more frequent injections as psychologically driven and you have no proof of deficiency. If they choose to ignore your account of how your entire life can be ruined by it then you are really on your own. As many of us are.

[WiscGuy in reply to MorningMist]

Unfortunately, medical practitioners have a long and vile history of blaming their own confusion on imagined psychiatric deficiencies of the patients unfortunate enough to seek assistance from these practitioners.

[TenovSvetik]

I have peripheral neuropathy because of great lack of B12-50 pg/ml. I tried SI every other day for 4-5 years, after that 2 times a week. Now one shot, 4 day pause. No different for me. I have tried cyano, hydroxo, methylcobalamin, no difference. I feel much better than 7 years ago. Be patient and good luck !