First SI! I did it!!

[JanCymru]

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.

[wp69]

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

[JanCymru in reply to wp69]

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 in reply to JanCymru]

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

[JanCymru in reply to Orchard33]

Thanks Orchard33, yes, will persevere! ❤️

[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 in reply to jade_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 in reply to jade_s]

Wish I had thought of chocolate way back when!

[WiscGuy in reply to jade_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 in reply to WiscGuy]

😂😂 Sounds about right!

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

[jade_s in reply to WiscGuy]

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 in reply to jade_s]

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

[JanCymru in reply to jade_s]

Sounds very familiar!!

[JanCymru in reply to jade_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 in reply to JanCymru]

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 in reply to JanCymru]

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 in reply to WiscGuy]

That's really useful information WiscGuy, thanks.

[JanCymru in reply to jade_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 in reply to JanCymru]

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

[JanCymru in reply to jade_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 in reply to JanCymru]

😂😂😂 got you covered there too 💃💃💃

💕

[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 in reply to topazrat]

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

[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 in reply to Wheat]

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 in reply to JanCymru]

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

[pvanderaa]

congratulations!!

[JanCymru in reply to pvanderaa]

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

[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 in reply to Bequia]

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 in reply to Bequia]

Good on you!

[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 in reply to NisajuBlue]

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 in reply to NisajuBlue]

Thank you for your lovely good wishes.❤️

[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]

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 in reply to Sarahpoppe232]

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]

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 in reply to Delilahmy]

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

[Hidden]

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 in reply to Hidden]

Good on you!

[JanCymru in reply to Hidden]

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]

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 in reply to Rexz]

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 in reply to JanCymru]

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 in reply to Rexz]

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]

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 in reply to jaybirdxNHM]

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

[Ghound]

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

[Cherylclaire Forum 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 in reply to Cherylclaire]

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 Forum Support in reply to WIZARD6787]

[....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 in reply to Cherylclaire]

Thank you really appreciate the thumbs up and support xx

[Cherylclaire Forum Support in reply to JanCymru]

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

[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 in reply to WIZARD6787]

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

[Rexz in reply to WIZARD6787]

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

[WIZARD6787 in reply to Rexz]

That was what I was doing. 🙂

[Rexz in reply to WIZARD6787]

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

[WIZARD6787 in reply to Rexz]

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

[JanCymru in reply to WIZARD6787]

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]

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

[JanCymru in reply to scnuke]

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

[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 in reply to Hockey_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!