First SI! I did it!!: After having... - Pernicious Anaemi...

Pernicious Anaemia Society

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First SI! I did it!!

JanCymru profile image
64 Replies

After having lots of advice from you lovely forum members I purchased all my supplies (apohealth.de. and Medisave), and have sat looking at them over the past week trying to pluck up courage to administer my first SI subcutaneous jab..... Can't tell you how many times I got the stuff out and then put it away again.... What a wimp!

Anyway, today I managed it! Not a completely professional and smooth operation! Snapped the ampoule in the wrong place (in a snapper tool - didn't line up the 'dot') so that was a bit messy.

Drew up ok, swapped to the 30g 1/2" needle for injecting but couldn't get the safely cap off the injection!! Eventually managed but lost a few drops of our precious liquid.

Did a good breath in and on the out breath put the needle in using the flesh to the side of the belly button. All good, then I started to shake and couldn't press the plunger! How pathetic is that, eh?! Withdrew needle and took a breath and reinserted but a little way over so as not to jab the same area. Good breath in again, and slowly out counting to 10 while gently pushing the plunger. YAY! All done! Didn't feel the needle going in, although I was obviously watching it and only minimal discomfort from the actual B12 liquid going in.

Small amount of bruising some 3 hours later, but I put that down to my inexperience and shaking hand and first-timer nerves.

What I have noticed is the overwhelming sense of having control over my body and my health knowing that I am in charge of receiving this life-giving and life-supporting substance. Now I might stand a good chance of halting and perhaps even reversing the neuropathy that has been progressing over the last 6/7 months, and which the surgery has consistently refused to acknowledge and treat under the NICE guidelines, despite my flagging it up on at least 5 occasions formally in writing with supporting printouts from the NHS website. Just wondering about the frequency now - was thinking x1 EOD for say a week and see how I feel? Realise that neuropathy can take months if not longer to halt or reverse, but all information or observations would be greatly appreciated.

Thank you all for your posts and information which has enabled me to take that first important step down this road to my health and wellbeing.

Any other tips about SI would be greatly welcomed - especially getting the safety cap off the needle!

If anyone is reading this and hesitating about starting SI, don't give it another thought, go for it.

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JanCymru
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64 Replies
wp69 profile image
wp69

I IM inject being doing it for 9 years , you'll soon get the hang of this , well done , Will.

JanCymru profile image
JanCymru in reply towp69

Aww, thank you wp69 - that's the best thing about this community the lovely support and messages, and knowing you are in a safe space to share too. 😍

Orchard33 profile image
Orchard33 in reply toJanCymru

Getting the pesky caps off takes practise and perseverance. We'll done for taking the plunge. A new initiate!!

JanCymru profile image
JanCymru in reply toOrchard33

Thanks Orchard33, yes, will persevere! ❤️

jade_s profile image
jade_s

Jan! Well done!! Congrats on your first SI! 🎊🎊 🥳🥳👏👏

It *is* tough at first. My hands shook like crazy for the first few weeks. Also got bruises. It gets much easier I promise! 😊

Try pushing down & twisting to get the cap off. Practice on an empty syringe.

EOD for neurological symptoms until they resolve or 'stop improving', but whatever you decide, keep a symptoms log and will you see what the right frequency is for you. Don't forget you might get 'reversal symptoms' at first where things get worse, before they start improving again.

Onwards & upwards 😄🌺🦋🌈

jade_s profile image
jade_s in reply tojade_s

Upon reflection I also remember that the first few weeks were very daunting. Each time it took me over an hour to get the courage. I would start, falter, put it back down, pick it again after 10 minutes, falter again. I put Netflix on & kept munching on chocolate to keep my courage up LOL. It will get much easier and soon you'll be doing it on autopilot 😊

WIZARD6787 profile image
WIZARD6787 in reply tojade_s

Wish I had thought of chocolate way back when!

WiscGuy profile image
WiscGuy in reply tojade_s

Good for YOU and your perseverance! And, to paraphrase a quote about beer, "Chocolate is proof that God loves us and wants us to be happy."

jade_s profile image
jade_s in reply toWiscGuy

😂😂 Sounds about right!

This forum was instrumental in getting me started and keeping me going 😉😊

jade_s profile image
jade_s in reply toWiscGuy

I just read back my first SI post and it was even worse than I remember 🙈😂 JanCymru you may get a good laugh healthunlocked.com/pasoc/po... apparently I couldn't work that darned needle sheath either 😂

JanCymru profile image
JanCymru in reply tojade_s

Just read it! Oh my word, what we put ourselves through, eh??!! x

JanCymru profile image
JanCymru in reply tojade_s

Sounds very familiar!!

JanCymru profile image
JanCymru in reply tojade_s

Sounds like my first SI was pretty par for the course then! Thank you for your reassurances, and the tip (sorry about the pun there!), about twisting the cap off. Will do. Symptom log is a great idea - have made a note of date and time etc, but will also add in the symptoms - might be inspired to put an Excel sheet together!(!) 😂

jade_s profile image
jade_s in reply toJanCymru

Oh yes, you did a great job getting it all in the first time. 😊 I think many, me included, lose half the liquid at the 1st attempt 😂

I made an excel sheet with all my symptoms along the top in columns, each day on a row, then printed it out and filled it in by hand, rating everything on a scale of 0-10. I also left room for notes & looking back, the notes are the most interesting/fun part to read now & at the time was also the more useful bit for troubleshooting. I scanned them all in afterwards, saved for posterity 😂 Have fun 😂

WiscGuy profile image
WiscGuy in reply toJanCymru

I think Excel sheet is a great idea. You might also want to create, or adapt, a severity-of-symptoms scale, indicating comparative levels of impairment. Creating the scale is frustrating and hard, but once you get it developed, you can indicate level of severity with a single number, useful in a spread sheet. (An example of a similar chart is included in the medical-journal article, "The Many Faces of Cobalamin (Vitamin B12) Deficiency," near the top, in the brief profiles of patients.) Also, a useful listing of common B12 symptoms is available here:

pernicious-anaemia-society....

Regarding a syringe plunger that doesn't want to plunge, that still occasionally happens to me. What I have found usually works for me is to withdraw the needle a tiny bit and again try to depress the plunger, and repeat until the resistance is less or gone and the plunger will depress. I am at a loss as to what is happening, but not surprising that it's a mystery to me, given that my "understanding is skin deep".

JanCymru profile image
JanCymru in reply toWiscGuy

That's really useful information WiscGuy, thanks.

JanCymru profile image
JanCymru in reply tojade_s

👍👍Thanks jade_s - feel like I've won an Oscar! At least I know my first SI was pretty average in its execution!! Thanks for the tip (!) about pushing down and twisting - will try next time. Will be aware of the possible reversal symptoms too and as suggested further down the comments keeping a symptom diary is a good idea. 😍

jade_s profile image
jade_s in reply toJanCymru

🏆 here's your trophy 👏👏 i'll leave wedgewood to give your gold medal 😊😂

JanCymru profile image
JanCymru in reply tojade_s

Oh heck, now I'll have to find a red carpet gown to wear!! Only joking, but thank you for the very lovely virtual trophy. 🤩👗❤️

jade_s profile image
jade_s in reply toJanCymru

😂😂😂 got you covered there too 💃💃💃

💕

topazrat profile image
topazrat

Well done you! It took me weeks to pluck up the courage to do the first jab, then when I did I got jelly legs and threw up.🙁

As you say, you can't beat the feeling of being in control of your own health. 🙂

JanCymru profile image
JanCymru in reply totopazrat

Thank you, that means a lot. And I hope your jelly legs soon disappeared too. 👍

Wheat profile image
Wheat

oh congratulations JanCymru I am newish to s.i. and know it takes real nerve and you did it! The first steps to healing yourself.

Three days ago I changed to a separate syringe and two needles , each time I have pulled off the injection needle when removing the cap. There is a nack to it im told 🙂 this last time I loosened the needle sheath a little then pushed the needle onto syringe .

JanCymru profile image
JanCymru in reply toWheat

Thanks Wheat! I'm going to try twisting the cap a little before I connect to the syringe. As said it's a knack and practice WILL make perfect. 😍

Nackapan profile image
Nackapan in reply toJanCymru

A latex glove helped me until I got the knack as grips

pvanderaa profile image
pvanderaa

congratulations!!

JanCymru profile image
JanCymru in reply topvanderaa

Thanks pvanderaa, lovely to have the support and good wishes. I feel as if I've won an Oscar! 😍

Bequia profile image
Bequia

Lots of you on here have inspired me and I've just ordered too- I would never have known about what was available without the PA society and this forum so thank you!

Hope you sson eel the benefits JanCymru. I'm lucky to have a health professional in the family who will be able to inject me or I would be in the same boat. Good luck and thank you all

JanCymru profile image
JanCymru in reply toBequia

That's the best thing Bequia about this forum and the PA society, all the lovely support, encouragement, advice, information and best of all a safe space in which we can be ourselves in our PA journey. Best wishes to you on your SI via family friend. 😍

WIZARD6787 profile image
WIZARD6787 in reply toBequia

Good on you!

NisajuBlue profile image
NisajuBlue

Yay! Brilliant, well done to you. I am lucky enough to have my daily injections done for me so I absolutely admire yourself and everyone else who are so brave and SI 🤩

I was misdiagnosed for almost 20 years and was finally diagnosed with PA in March 2022. Also had invaluable and in my opinion, life saving advice from this forum and PA Society, for which I am and will forever be truly grateful.

I did EOD for several months but now have IM injections daily and although I know some issues are now likely irreversible, I have definitely seen a marked improvement with several symptoms.

A symptoms tracker is a great way to keep an eye on how things are going but you’ve achieved the hardest part by taking your health into your own hands, Congratulations 🥳 wishing you all the very best! ❤️

WIZARD6787 profile image
WIZARD6787 in reply toNisajuBlue

I am not symptom free as of yet. My peripheral neuropathy which was deemed as permanent and would have been without my designing my own self treatment regiment. See my profile for my regiment which is my design and my responsibility.

JanCymru profile image
JanCymru in reply toNisajuBlue

Thank you for your lovely good wishes.❤️

Nackapan profile image
Nackapan

Great. I started subcutaneous injections over 2 years ago and settled on the 30G 1/2 " needle .

Hence posting

A neurologist wrote to Gp condoning the suggestion i made after seeing sc on the German b12 packet .

Well done.

So much less anxiety being in control.

Sarahpoppe232 profile image
Sarahpoppe232

well done and how do you feel ? Which Medichecks needles did you buy please and did you use the same one for the draw as the injection?

JanCymru profile image
JanCymru in reply toSarahpoppe232

I used Medisave in the UK - 26g x1.5" drawing up needle and 30g x 1/2" for actual injection on the advice of other folk on here.

Delilahmy profile image
Delilahmy

well done and congrats xx don’t forget the methyl folate and co factors xxx but amazing your well on your way now xx

JanCymru profile image
JanCymru in reply toDelilahmy

Aah, yes, need to investigate that side of the operation - any pointers? 🙂

Oh wow, how amazing are you!!! I am fighting my own gp battle at the moment and realise this is the route I will end up taking, your story gives me the courage to move forward and start SI.

WIZARD6787 profile image
WIZARD6787 in reply to

Good on you!

JanCymru profile image
JanCymru in reply to

It's down to the others on this forum before my post that gave me the courage to start SI, so I know you can do this too. Take your time, glean all the information from here as to supplies etc, and you'll get there. Wishing you well. If only GP surgeries could read some of the stories on here they might just get an inkling of how vital this humble vitamin is and the ramifications of under-diagnosis and then under-prescribing. Am sure the NHS is forking out millions due to the ongoing effects of under-prescribing when the answer is right under their noses. 😘

Rexz profile image
Rexz

Congratulations!! Personally I was terrified to stab myself the first, and second, and third... times! Now going on two years of weekly SI. Yes, it's completely not normal to not only want to but also to actually stab yourself with a pointy object.

Bravo to you! You're are now a graduate of HealthU SI University! : )

Rexz

JanCymru profile image
JanCymru in reply toRexz

Thanks Rexz, must admit to being a bit wobbly about it, and putting off for days and days. Did my 2nd SI today - used my upper outer thigh to see if it would be a better area. Didn't feel the needle, but felt a bit stingy when when B12 went in. Good to try out different areas, especially as I am a bit hesitant and am bruising myself a bit at the moment! Am sure it will get better in time.

Rexz profile image
Rexz in reply toJanCymru

JanCymru, Are you injecting Intramuscular (IM) or Subcutaneous (SC)? SC is so much easier and I've never had a bruise after three years of injecting SC.

I always suggest starting with SC and if that works then just do that.

JanCymru profile image
JanCymru in reply toRexz

Thanks again for the additional reply Rexz. I'm doing SC, as I thought that would be a good starting point(!), as I always find my surgery jab quite painful and that is IM. I think the bruising is due to my inexperience and shaking hand! Am sure there will be less bruising, or none, once I gain confidence. Best wishes to you.

jaybirdxNHM profile image
jaybirdxNHM

Congratulations, it a lovely feeling ,knowing you are in control ,at last!I have arthritic hands ,the only way I can get caps off needles is by using small pair of scissors , just placing them, slightly open under the bottom of cap and wiggle with a slight upward movement. The cap flies off, so cap hunting is a game😅 .

Good luck.👍

WIZARD6787 profile image
WIZARD6787 in reply tojaybirdxNHM

Early on I used a hemostat that I bought on Amazon.

Ghound profile image
Ghound

Congratulations Jan and very well done ! 👏 Onwards and upwards 🙂👍xx

Cherylclaire profile image
CherylclaireForum Support

Well done. It goes against every instinct, doesn't it - and yet this is absolutely the final word in self-protection !

Do not get disheartened if you get worse before better or if it takes a very long time to notice positive results. Sometimes, when they eventually start doing something, progress is rapid. This is why it is a good idea to make a symptoms chart.

Funny how many symptoms become a thing of the past. Often I will read a post on here and think "Oh, yes ! I remember now - I used to get that !" (Wouldn't that be a good feeling ?)

Be aware that some symptoms can be way more stubborn. Some of mine have stayed with me. It took 6 months of frequent injections from my surgery for me to even be able to tell if/when I'd been injected. Had to ask each time, or I might have stood up with the needle still attached !

But we are all different - and I am wishing you speedily well. First step done : a brave and positive move made !

WIZARD6787 profile image
WIZARD6787 in reply toCherylclaire

I also experience that some symptoms go away and I noticed that they have without knowing that they left. Lots of times it is. Oh I don't have to worry about that anymore.

Cherylclaire profile image
CherylclaireForum Support in reply toWIZARD6787

[....unless of course it's a sign that your memory is deteriorating.]

Useful sometimes to look back - and remind yourself how far you have crept !

JanCymru profile image
JanCymru in reply toCherylclaire

Thank you really appreciate the thumbs up and support xx

Cherylclaire profile image
CherylclaireForum Support in reply toJanCymru

Any questions or concerns, there is always someone here who can help.

WIZARD6787 profile image
WIZARD6787

Good on you! Does my heart good to read about your accomplishment! Sometime today I will celebrate your accomplishment in New Hampshire. Perhaps I will pick a flower from my yard and throw it into a brook, the essence of which will eventually get to the ocean and to you.

I think it's worthy of note that you are learning how to self-inject in the throes of B12 deficiency..

I came to understand that for me it is wrong that I have to self- inject without the benefit of competent medical support. It is not wrong that I do self-inject.

At first I used a hemostat to take off then needle guard.

WIZARD6787 profile image
WIZARD6787 in reply toWIZARD6787

I opted for a celebratory campfire in my yard with a grilled blueberry muffin to celebrate!

Rexz profile image
Rexz in reply toWIZARD6787

Hey if you're bringing blueberry muffins it's be nice if you brought enough for all of us!!! 🤣

WIZARD6787 profile image
WIZARD6787 in reply toRexz

That was what I was doing. 🙂

Rexz profile image
Rexz in reply toWIZARD6787

Aww thank you!! Ummmm, errrrrr, were these gluten, dairy and sugar free muffins? 😇

WIZARD6787 profile image
WIZARD6787 in reply toRexz

No they were not. Extra sugar. However the blueberries were wild highbush from the shore of the lake I swim in. 🙂

JanCymru profile image
JanCymru in reply toWIZARD6787

Thank you for the lovely floral thought Wizard6787, very kind. Still feeling chuffed with myself today, 24 hrs after! Going for EOD for a little while, but mindful of reversal effects. Jotting everything down. Will look for a haemostat - thanks for the tip (!).

scnuke profile image
scnuke

Hurray for you! Soon it will be just as routine as brushing your teeth.

JanCymru profile image
JanCymru in reply toscnuke

Thank you! Yes, new routine - make sure I am wide awake and just don't get the toothbrush and syringe mixed up! 😲

Hockey_player profile image
Hockey_player

Congrats! I don't know if I could stomach that, but I don't have to because my husband injects my B12 into my arm. It is nice to have control over your own health!

JanCymru profile image
JanCymru in reply toHockey_player

Well Hockey_player it has taken me months getting advice and reading posts and over a week having all the supplies ready to go before I actually did the first SI, so you could say I 'cautiously approached' the whole SI thing! Did the 2nd one today, in my thigh. Needle painless, B12 fluid a bit stingy. Small bruise, but most likely due to me wobbling a bit! Glad you have a willing helper for your jabs!

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