Spacing out injections

[lambuth_eagle]

Tried to go from weekly injections to every two weeks…make it one day past my normal shot day and horrible small fiber neuropathy in my feet that I haven’t had since doing weekly injections. 😫 Anyone else get symptoms back if they try to extend just a day or two past their normal spacing?

[wedgewood]

You have obviously found the right injection regime . I would just stick to it ! It’s just awful when the symptoms start returning , reminding you of the days when the battles with the GPs started . Thank goodness that the injections are cheap( well i think that they are the best value items i have ever purchased in my whole life !)

[SupportSeekerGiver]

Hi Amy ..... yes, I sure do, and I am still having to do daily injections. Apart from the obvious unusual level of fatigue and general 'not right feeling' returning almost exactly 24-hours after my last injection, I also get a tell-tale dull tingling pain in my upper back, which was one of my first 'alarm' symptoms prior to diagnosis. Based on all the research I have done and the sound advice I've been given on this group chat, my opinion is that it is good to test the waters about reducing the frequency of injection (how else would you ever find out) but not be afraid of sticking to a regular routine that works for you. Keep your head up, you are in good company

[lynxis in reply to SupportSeekerGiver]

I am also on daily injections. I have tried to go down to every other day but, like you, I have that "not right feeling" and a tingling in my upper back, shoulders and the back of my head with an internal vibration that keeps me awake. I haven't been able to cut back in over 2 years, maybe never will. But with daily injections I feel almost normal most days.

[SupportSeekerGiver in reply to lynxis]

Thanks Lynxsis ...... as you say, with daily injections I too generally feel normal, with enough energy to do plenty of work, exercise, social life, etc. My first post in this group was asking about how long others had been administering daily injections and if there were any pitfalls. Thankfully I got a lot of encouraging/supportive replies. Including one gentleman in his late 70's who had been on that regime for over 20 years - and still doing well on it.

[mcg-woo]

Hello! I too have been trying to reduce my injections from weekly injections to once every ten days and eventually to every other week if that’s possible. However, the day before a shot is due—after 6 days—I start to feel symptoms creeping back in. Can I ask how long you have been doing weekly injections? Thanks.

[lambuth_eagle in reply to mcg-woo]

I did weekly injections for 9 weeks.

[mcg-woo in reply to lambuth_eagle]

Gotcha—that’s not very long at all—makes sense that your symptoms are returning when trying to space them out. I’ve been on weekly injections for about a year and I’ve been able to move ahead with my recovery on that schedule. I would never have recovered the way I have on injections every other week—which I did for a very long time—about 3-4 years. My recovery was held back because of this.

My doctor would like to see me reduce but if I’m not able to do that, I hope she’ll support me on the weekly schedule long term. I think she would be happy if I could get to once every ten days. There’s something about b12 levels being off the scale that make doctors nervous. Best of luck to you!

[lambuth_eagle in reply to mcg-woo]

Thank you for your reply. I really think I need to stay on weekly injections. I appreciate this group so much. Do you self inject? If so, IM or Sub-C? And where?

[mcg-woo in reply to lambuth_eagle]

Yes, I have been self-injecting hydroxo for five years IM in my left and right thighs—I try to rotate on each side. Hydroxo has to be injected in the muscle in the US.

I have also had hydroxo injected in my arms by a clinic worker. I find injections way more comfortable in the thigh but it could also be technique. I try and take it nice and slow and I’m using a 1ml syringe to inject that amount.

My initial treatment was administered by nurses SC cyano and then another practice administered cyano in the muscle. I feel like cyano was definitely more comfortable but I did some research and felt like hydroxo was the way to go—and I had been receiving it in a clinic and was doing well on it.

Some folks are a bit apprehensive about IM, but it really is a piece of cake. It feels good to know that I’m able to be in control and not have to rely on a nurse’s availability to do it for me. Plus, who even imagined there would be a lapse in routine healthcare due to covid? I needed to learn SI because I was starting a new job and couldn’t take off work an hour a week to see my doctor for a weekly injection. Scary at first, but I had been so sick that it gave me courage. I never want to feel that way again EVER!

Hope this helps you! You’re on the right track. From my experience, I was cut back on frequency of injections way too soon (weekly to every other week) and it really delayed my recovery. Best of luck to you!

[lambuth_eagle in reply to mcg-woo]

Thank you again for sharing your story. It is very helpful. I just learned a couple weeks ago how to self inject. I was surprised how easy it was. I found drawing up the serum was harder than the actual injection. Did my first one at home this week. I have been doing them in the thigh and IM. When I was getting them at the dr office it was in my arm. Cyano is what I use but have been wondering if hydroxo might be better. Are you in the US?

[mcg-woo in reply to lambuth_eagle]

Congrats on learning to SI. You are very brave!

Yes, I am in the US. I obtain 30ml multi use vial of hydroxo by rx and fill at Walgreens. I’ve had better luck there than CVS.

I will warn you that every so often there is a shortage of Hydroxo and it goes on back order. One lab in Portugal produces the US supply of Actavis and I think it has the do with production schedule that results in the shortages.

This is really frustrating and I have suffered the consequences of trying to stretch out my supply of hydroxo, which must be refrigerated after opening and discarded after 28 days.

My plan moving forward is to go on cyano as soon as the next shortage occurs. I’m a little worried about how I’ll do on it? Some other users of this forum have sourced methyl through compounding pharmacies but insurance may not cover that?

Perhaps, US posters could weigh on how they source methyl for injection in the US? I know it has very limited availability in the US. Also, some don’t react well to methyl injections, so I’d be a little apprehensive about switching to methyl. Perhaps, some folks can weigh in in their experiences injecting methyl?

[a-wonderful-seed in reply to mcg-woo]

‘I have suffered the consequences of trying to stretch out my supply of hydroxo, which must be refrigerated after opening and discarded after 28 days.’

Eh? From the U.K. (and very new to SI) I’ve never heard of hydroxy having to be kept in a fridge nor used inside of a month. The use-by date on the hydroxy I’ve just bought is long, two years from now.

And I’m sure I’ve read posts here saying that hydroxy ampoules only need to be kept in a lukewarm-to-cool place (under 25 Celsius).

Happy to hear corrections if this isn’t right, but I can’t imagine it isn’t.

[mcg-woo in reply to a-wonderful-seed]

You are referring to a single use dose, correct? I am referring to a multi use 30ml vial—a multi use vial should be refrigerated once opened and tossed every 28 days.

[a-wonderful-seed in reply to mcg-woo]

Ohhhh, yes that’s right. Sorry, my mistake. My head’s gone it’s the weekend lmao😅

[EiCa in reply to mcg-woo]

Hydroxy has to be administered IM in the US? I am in the US and have been injecting sub-q. No one has instructed me otherwise. What would the reason be for this?

[mcg-woo in reply to EiCa]

Because the Actavis package states in bold, red letters for intramuscular use only.

Box of Actavis hydroxocobalamin injection.

[EiCa in reply to mcg-woo]

Well, thanks. I am going to have to check this out!

[MsSqueaks in reply to EiCa]

I am in the US and use that exact 30mL vial of hydroxo. I do not refrigerate and do not believe it's necessary. I do protect from light and extreme temps, and I discard after 28 days. I inject sub-q despite the warning on the package. I have read that the reason "only for IM" is really just that the manufacturer doesn't want to jump through the hoops to do the research proving it's effective for sub-q. I'm about a year into my recovery, and I'm definitely improving with alternate day injections. I was basically incapacitated 14 months ago when I started injections

I would check with your compounding pharmacy about the 30 degree angle for sub-q. Everything I've read says that injections need to be at 90 degrees for "deep subcutaneous" injections regardless of what type of B12 you use.

I plan to go back to IM at some point to test if I personally can tell a difference. I also want to order the individual ampoules of hydroxo to avoid injecting preservatives.

Just wanted to share my experience because I know we're all looking for our own best way forward.

[EiCa]

My packet of pre-filled syringes (by a compounding pharmacy) says to inject into abdoment at 30% angle. It says nothing about IM though upon searching the internet I found several links supporting IM only. I find sub-cutaneous too easy to quit unless I really must. Thanks for your trouble.

[mcg-woo in reply to EiCa]

Hey, if it’s working for you, that’s what matters. There are people on this forum in the UK who administer hydroxo SC, I believe? I had one doctor who injected cyano SC, another insisted that cyano be injected IM and of course my rx requires IM. I think it has to do with absorption.

I would love to know how you went about sourcing hydroxo through a compounding pharmacy? Is it covered by insurance? I live in constant fear of when there is a shortage of Actavis hydroxo and I can’t obtain it. I would also be very interested in single use dose of hydroxo.

I would welcome any insight you could provide. Also, is the hydroxo comfortable when injecting, but I guess it would be different SC versus IM? Thanks!

[EiCa]

It wasn’t easy but is mostly because I couldn’t find/get a doctor interested enough to write a script. Once I got that, the compounding pharmacist took the script and filled it. It is expensive though. Basically $7.50/ injection. A few years ago a different doctor wrote a script and faxed it to a Colorado compounder. Their hydroxy came in a vial of 30 ml for $70 with shipping. I am more comfortable with individual shots and/or ampoules. I ordered ampoules from Germany 21 days ago and still have not received them. They are much more affordable; about $2 each plus shipping. I sure hope they come. I am very sensitive to chemicals so I prefer no preservatives. If you have any more questions, feel free. There should be a compounding pharmacy near you or within easy mailing access.

[mcg-woo in reply to EiCa]

Thanks for the info! I knew that some people on this forum in the UK obtain hydroxo from Germany, but I didn’t realize that it could be shipped to the US? Would you mind providing an update once you receive the ampoules and use them? If it works out, would you mind sharing the link you used to purchase? Good luck!

[EiCa in reply to mcg-woo]

Sure will do that! I am crossing my fingers right now. I have been tracking the shipping and it has been in US customs for 6 days now. I am trying not to be upset and hoping this is normal for overseas orders AND the holiday shipping may be delaying things. I DID order 20 ampoules because the shipping cost $40 for 10 or 20 so I ordered 20. I am hoping they come and I don't have to do this too often. I don't inject more than once/month currently.

[mcg-woo in reply to EiCa]

Good luck! Fingers crossed for you it all works out. 😊

[lambuth_eagle]

Thank you to al who replied. I touched base with both my hematologist and the neurologist and they both feel like I need to go back to weekly injections. Hopefully I’ll begin feeling better again soon…can’t believe how much that one try messed me up!