hydrocobalamin/saline

[Shadowlight]

I self inject. I have switched from an American supply of cyancobalamin to hydro. If I inject slowly, it is painless...most of the time. Sometimes, though, it is quite painful.

Not unbearable, but I'd like to avoid it if possible.

Any advice?

[wedgewood]

Use the finest needle possible for the method you use . 25G for intramuscular,and 30G for sub-cutaneous .. Yes, inject slowly . You can buy numbing cream from Amazon .. If you swab the skin with an alcohol swab , allow it to dry before injecting . Best Wishes .

[Shadowlight in reply to wedgewood]

Thanks wedgewood. Your posts have been tremendously helpful in the past. I wasn't clear enough here, though. Due to the absurdity of American healthcare, I am having to bounce between American cyan and German hydro. Hydro is saline-based, and so it stings if I don't inject slowly. I usually take about a minute. No big deal.

However, every 10th time or so, no matter how slowly I go, it hurts the entire time. It isn't horrible, but I thought maybe I was hitting a nerve or something?

[Bellabab in reply to Shadowlight]

I cannot understand why saline would sting at all. Nothing about saline to sting its just sodium chloride in pure water! In fact what most of our body is made from. It must be something else.

[Shadowlight in reply to Bellabab]

Thanks, Bellabab.

I never had this issue in many years of SI cyancobalamin. It only began when I switched to hydro. Saline is salt. Salt definitely stings when introduced to wounds, and an injection is a wound of sorts. Maybe it's of a higher salinity ratio, though. That could explain why it hurts sometimes and not others.

[Shadowlight in reply to wedgewood]

I do use 25/26g for IM. 1 inch. Letting the alcohol dry is a good tip.

[Nackapan]

I have sc and IM I find SC just as effective at present and painless .

I do not do the IM ones . So abit hit snd miss with the nurses who I know hate giving them.

[Shadowlight in reply to Nackapan]

Thanks, Nackapan. I self inject IM. If you can manage to do it yourself (IM or SC), you're better off. It isn't terribly hard. You can do it. It's the saline in the hydrocobalimin that's causing my stinging injection, but I must be occasionally hitting a nerve or a capillary.

[mcg-woo]

Hello! I am also in the US and began treatment on cyano subcutaneous, then switched to cyano IM before moving on to Hydroxo IM. I obtain Actsvis 30ml Hydroxo from Walgreens—I used to get it from CVS but ran into issues obtaining it. It is usually obtainable, but there are lapses in production, which can be frustrating. I haven’t been able to fill my rx in 2 months so I always have an extra supply on hand to get through times like these. I use a 30ml every 28 days—I throw out the extra. I have found that cyano is a more comfortable injection but I wanted to switch to hydroxo because I had read studies about the tissues retaining it more effectively and I wasn’t comfortable with my body having to eliminate the cyanide molecule in the cyano. I find Hydroxo is less comfortable injecting. I self inject in the thigh, which I find more comfortable than when I was receiving IM injections from someone else in the arm. I also use the 25x1 needle but I don’t find it’s the needle that is occasionally uncomfortable—it’s the Hydroxo. It may siting a little occasionally but nothing like say—allergy injections—if you’ve ever had any of those? Many of my injections are completely painless, a few are uncomfortable but it is very rare that I find one to be what I would call painful. I have also been very sick without injections so I find them quite tolerable because they keep me functioning and healthy. Best of luck to you!

[Shadowlight in reply to mcg-woo]

Thanks, mcg-woo,

Yes, we are in a very similar situation, though I couldn't find American doctors willing to prescribe me b12 in sufficient amounts to keep me well, hence the German hydrocobalamin. Like you, I believe the hydro is more effective, but it is also clearly the culprit in the pain I am feeling. It never happened during a few years of cyancobalamin (which is the only form of injectable b12 my doctors will offer).

It's only every 10th jab or so that this happens, and considering the alternative, it's completely bearable. I was in the hospital, unable to walk and in severe cognitive decline before I was diagnosed. I was about as far gone as you could get and come back. I have some permanent nerve damage in my hands and feet, and suffer from some aphasia, but here I am!

[mcg-woo in reply to Shadowlight]

Obtaining adequate treatment is so frustrating! I still have trouble understanding why this is such an issue when it comes to B12?? I’m sorry to hear that you have suffered permanent damage. I can understand why you would look outside of the US to get what you need. It’s too bad you can’t get the hydroxo here since it only comes in a 30ml bottle, you could SI daily if that’s what you need. It sickens me to throw out a nearly full bottle of it after 28 days. Still, my cost at $10 per 30ml bottle is still cheaper than four single dose bottles of cyano that cost about $17. I’m glad that you are able to access what you need from Germany. Best of luck to you!

[Shadowlight in reply to mcg-woo]

Yes, it's a bit absurd. One of my doctors was actually sanctioned for prescribing me B12 without a blood test. I have been prescribed cyan in 1 ml bottles and the 30 m; bottles. I didn't know that they had to be discarded after 30 days once tapped, though. Thanks for that. It explains a few things.

The Germany supply is in 2 ml glass ampoules (I'll get 1 ml next time). I get a kick out of breaking the ampoules open.

[jimmel196 in reply to mcg-woo]

Just curious, have you been able to tell any difference on the hydro v/s the cyano? thanks.

[mcg-woo in reply to jimmel196]

My cyano use was very limited—two monthly loading doses and a series of five weekly injections, before I switched to hydroxo, which I have been on 4.5 years. This makes it hard to compare the two. If I had to pinpoint a difference, it would be that I seemed to “crash” much quicker between cyano injections and this would seem to make sense as some studies have shown hydroxo is better absorbed by the tissues and thus may allow for less frequent injections. The reason I switched to hydroxo is that I was refused a cyano b12 injection at my doctor’s office from the receptionist who told me I had to wait until my blood work came back (even though the nurse had told me I could have an injection whenever I felt like I needed it). I crashed the next day and was unable to function. I went to a lab and had a series of five weekly hydroxo injections. When I went back to my dr, I told her how much better I was doing on the hydroxo with weekly injections and asked her to change my rx to hydroxo. I also learned to self inject at that time. I had also read “Could it be B12? An Epidemic of Misdiagnosis,” which convinced me that hydroxo was a better option. It’s not easy to obtain sometimes in the US, when it’s on back order, but I feel like it’s worth the trouble. Hope this helps!

[RLG99]

Hi Shadowlight, I switched from IM cyanocobalamin to SC hydroxocobalamin. The intramuscular injections at times could be quite painful - I figured I was hitting a nerve. Since starting hydroxo, I now inject subcutaneously, no pain whatsoever and I've never had a stinging sensation. That being said I get my hydroxocobalamin from a compounding pharmacy, perhaps it doesn't have saline in it. In any case, it may be worth trying subcutaneous injections. Good luck!

[Shadowlight in reply to RLG99]

Thanks, RLG99,

I've tried SC. IM seems to work best for me, but wow I have hit a nerve a time or four! Worth it for me given my results. I inject less often with IM.

I'm curious now - mind asking your compounding pharmacy (new term for me, thanks!) if your hydroxo has saline?

Thanks!

[RLG99 in reply to Shadowlight]

It is preserved with sodium chloride, aka saline. Sorry this stings you, I have never felt anything. Perhaps because I am SC and you are IM.

[Shadowlight in reply to RLG99]

It does seem to be likely that saline plus IM is the reason for the stinging. Still can't figure why it hurts more only every 10th time, but in the end it is a minor inconvenience and a very small price to pay for the benefits returned to me. It's good to have a little mystery on one's life

Thanks for checking with your compounding pharmacy, and thanks for teaching me that they existed!

[lynxis]

You can consider yourself lucky.

I am also in the southern US. It took me a year and a half to get my PA diagnosis in spite of exhaustively advocating for myself, and as a result I have seemingly permanent neurologic damage and have to self inject to get the treatment I need. No one would take me seriously or help me even though my body was dying. Not the first time I've been ignored and disbelieved as an autoimmune patient.

My kid has a 4 month wait to see a pediatric endocrinologist and the wait for pediatric neurology is 7 months. 7 months.

My spouse died before the ambulance came and the hospital sent me a $10,000 bill.

These are just a few examples, from 1 person.

Just because "we have it better than many others" does not mean it is not bad. People deserve better, everywhere.

[Shadowlight]

I'll echo lynxis. You have been lucky, Even after I nearly died from PA, I had trouble finding doctors to prescribe me adequate amounts of injectable b12. By the time I found a source of B12 in Germany, I had sustained permanent damage. My hands and feet are numb. My speech halting. My memory is failing. My hair is breaking off.

Insurance is expensive, and even with insurance , the b12 I get from the US cost 10 times as much as the same amount from Germany.

Including the postage, which cost more than the b12 itself.

Count your blessings. You have been very lucky.

[Shadowlight]

There are a myriad of extremely obvious problems with America's health care system, but this is not an appropriate forum to discuss them in. I find it unfortunate but irrelevant that wait times are long in other countries. May I gently suggest that it isn't helpful to tell people that "we have it much better than many others", because some of us here have it pretty bad, and as the the old song says, "that ain't good".

Have a good one.

[Foggyme Administrator]

All - please note. Some replies in this string have been deleted so some of the responses that remain may appear out of context.

[ottiliefloyd]

Hello Shadowlight

I too SI IM with hydroxo. I found it very painful until I came across a tip on here that works a dream (sorry I can't remember the user's name to pass on the credit) I heat a wheat bag and place it across the injection site with the Vial between my leg and the bag while I prepare (approx 2 mins) If it has ever stung since using that trick it has been very mildly.

Hope this helps.

[Shadowlight in reply to ottiliefloyd]

That sounds like a promising experiment, ottiliefloyd. I'll sub in a hot water bottle. I guess because it's only 2 minutes that the heat has no negative affect on the efficacy of the B12?

Thanks so much,

~shadowlight

[ottiliefloyd in reply to Shadowlight]

That's a question I'd love someone on this forum to clarify! I know B12 is negatively effected by sunlight. Maybe fbirder or wedgewood might be able to help us. All I know from experience is it does work, there is literally no pain!

[fbirder in reply to ottiliefloyd]

Warming it to about 35 C shouldn't have any effect on its stability. After all, that's the temperature it will be at for the next few weeks/months/years

[ottiliefloyd in reply to fbirder]

Thanks fbirder, appreciate your response!

[Shadowlight in reply to ottiliefloyd]

FYI, ottiliefloyd, I just did a modified field test with a hot water bottle. I usually feel a little sting - but no stinging this time! I'll return with a report in a couple weeks. Thank you!

[ottiliefloyd in reply to Shadowlight]

🥳 Great to hear! Look forward to the update in a couple of weeks

[Shadowlight in reply to fbirder]

I scared my ferret laughing at that, fbirder. Thanks for that, and thanks, too, for the months of advice I've gotten from many posters, but you and wedgewood, in particular.

Wish I could send you some of this.

Produce from my garden.