Best way of treatement?

[Annaunge]

Hi, all dear B12 def sufferers,

After one year of sc injections EOD my bloods are still not excellent. Low Hb, low count of erytrocytes and MCV is high.

My neurological spts are much improved comparing to my situation one year back. I still have some spts of subacute degeneration of spinal cord, but much less. These has been the worst spts to handle, stand out with.

Other spts has improved and even recoverd.

I have now decided to switch to im injections to see if this will make approvals.

So my question is if anyone has experiance of better outcome with im injections than with sc ?

Needless to point out that nor GP or hematologist or neurologist has approved the EOD protocol treatement, so I handle this by my own.

I would like to have your opinion end experiance of doing sc or im , thank you in advance.

All Best

Anna

[Nackapan]

I'm 5 yrsrs in.Started with hydroxcobalamin IM b12 injections 💉

For over 3 years now have been sc at home but kept to the regime of 6 weekly IM at the surgery .

The only difference I've experienced is IM can go into my system more quickly .

Unfortunately do not last any longer.

I'm suorused by this as in theory shoukd as going deeper.

So overall for me little difference.

I stick to this regime as darnt change a thing .

Am not phased by having to wait 7+ weeks for IM ( hols ) not mine!

Well worth trying IM .

Let us know how you get on

[Wheat]

hello, Annaunge, my experience of i.m. injection is only based on the 6 loading doses: that I had no increase in energy but had increased urination.

s.c. works well for me, again no noticeable energy boost but many symptoms are improving.

However, as Nackapan states, it's worth trying.

Also, injecting every day might prove more effective and beneficial. Best wishes.🧑🏻‍🎄🎄

[ShawnH in reply to Wheat]

Increased urination was likely due to hypokalemia. You must intake 4800mg of potassium for B12 absorption.

[Wheat in reply to ShawnH]

Thank you ShawnH, yes increased urination was very marked then, but I s.i. now with bananas and coconut water for potassium. But, I will look (urgently) into hypokalemia! 🙂🎄

[B12life]

I have only done IM. Only because I don't dare do sc with how thin I am. Seems like a lot of people do SC here.

I do daily shots. This is my 3rd year. Took me almost 2 years to recover so be patient. I started mild exercise after 1.5 years and I felt it help. Just walking a mile each day seemed to help absorption and healing.

Best of luck! There is hope

[scnuke]

Your route of administration likely makes no difference in effectiveness of the B12. But, you do have to consider that your out of range blood tests may have nothing to do with PA or B12 def. Plus, it depends on how far out of range they are. My low Hgb was due to an iron deficiency, common in people with PA. The others may be due to some other condition unrelated to PA, or it may be insignificant. I have the same results, low Erythrocytes and high MCV, but they are just a little bit past the high and low ranges. My Hematologist says to not be concerned.

[Annaunge in reply to scnuke]

Thanks. I will have an iron panel test soon. Hematologist says maybe premalign disease, clonal. Cytopenia of unclaer significans, more tests are planned. But I am stubborn with B12 theory. Thanks for your concern🙏🙏. Time will show……🙏🙏

[am111]

Your microcytic anaemia (high MCV) could be caused by a folate deficiency also. Have you tested for it?

[Annaunge in reply to am111]

I take folic acid 5 mg a day.

[am111 in reply to Annaunge]

oh well. Then it is definitely B12 related. I did not find SC different than IM but it may be different for different people. SC depends on dispersal in the fat tissue while IM is directly into muscle, which leads to faster absorption (15 mins vs, 1-2 hours). Once B12 gets into the blood, it should be same.

[ShawnH]

Oh my gosh. YES. I started with daily IM injections (1 inch needles) after PA diagnosis. Had significant improvement of neurological symptoms, with nearly all going away entirely after 3 months. Then my doc suggested needles that were 1/2 inch, when I complained of bruising and pain. In 3 months, I was headed back to ground zero with the reappearance of neurological and other symptoms. When I realized the only thing that I had changed was needle length, I went back to 1 inch for IM, because the shorter needles were not getting the b12 into the muscle. All symptoms cleared again in 3 months.

IM everyday for me.

[Annaunge in reply to ShawnH]

Thank you ! 🙏. I have noticed spts worsening lately, then I started to think about this difference of how I take my B12. As all ( mostly ) doctors seem to think ” it is all in your head”, I don t even bring up,this discussion of taking sc or im with doctors. I am grateful having this forum! 🙏

[Sailinglady]

I recently tried sc injections, but have gone back to im because i didn't think the sc were as effective.

[Annaunge]

thanks for your sharing of experiance!🙏 Now I know from all your answers that I am thinking correctly and will go back ta im! 🙏

[GoneWithTheWind1972]

I couldn’t understand why my MCV was always high and referred this question back to my gastroenterologist in the early days of three monthly Hydroxocobalamin treatment. Her answer was ‘it’s just related to PA and that’s normal’ In theory it’s NOT normal to be high with treatment. I began my research and self treatment of SC Methylcobalamin B12 daily. One year on my MCV was still high, more time was needed. A further six months to a year later my MCV finally went into normal range. I believe every body is different in the healing process. I’m still symptomatic with nerve pain and believe that I require more time for more healing. I now no longer look at pathology results, my body is requiring more time. The way I understand this is I was deficient and ill for than six years that I must give my body more than two years for healing, it just takes time and we are all different. Just be patient with the healing process. SC or IM is a personal preference. Keep up with your treatments and just give your body time, you will get there eventually.

[Annaunge in reply to GoneWithTheWind1972]

Thanks! I really appreciate all your stories from the reality. Doctors expects blood values to normalize within weeks……if not it ” all in your head”, functional disorders. 🙏

[ReallyWondering]

I’m in the US and they seem to prescribe SC injections. My doctor also started me off on weekly injections. It’s three months now and I still have constant tingling in my feet. Also ringing in my ears and severe heartburn daily. How do you know if you need more injections than once weekly? I see a lot of people posting they inject daily or more than once a week.

[Hockey_player in reply to ReallyWondering]

When your feet are tingly, the recommendation is to have shots at least every other day until that clear up.

[ReallyWondering in reply to Hockey_player]

Is that a UK recommendation?

[Hockey_player in reply to ReallyWondering]

Yes- but the reason they recommend it is because that is what it takes to clear up the neurological symptoms. It is good to get rid of those. For people who wait too long to get treatment, they can be permanent.

[ReallyWondering in reply to Hockey_player]

Since I’ve already been on weekly shots for 3 months, is it too late to start introducing a daily shot?

[Hockey_player in reply to ReallyWondering]

It's not too late. From what I have observed on this forum, different people need different frequencies of injections to feel their best. It's good to monitor symptoms to find out what works best for you. There has been almost no research on this topic.

[Hockey_player in reply to ReallyWondering]

Here is a US source recommending daily or every other day to start. ncbi.nlm.nih.gov/books/NBK5...

[Hockey_player in reply to Hockey_player]

It mentions switching to high dose supplements. They seem to work for some people but not for others. They worked for me for several years, but eventually I started needing injections.

[ReallyWondering in reply to Hockey_player]

Thanks. I sent that to my NP. I wonder if she’ll read it. I may just start injecting twice a week to see if that changes anything. It’s sad that the medical staff is so uniformed of this condition.

[Rexz in reply to ReallyWondering]

Hi ReallyWonderingThat's a bit tough to answer as there is no hard rule. You just have to learn to feel your body. It will tell you when and the "tell" is different for each of us and is terribly difficult to learn. It took me about 2 years to learn how to listen to my "body speak" but now I can feel myself. It's very subtle it usually starts with slight worse fatigue. Now that's about every four to 6 days so that's my frequency. If I wait the fatigue gets worse and I'll have strange sensations in my right leg and foot. So just experiment and the best thing is to journal your symptoms and injections. It's not an easy process. Then if you neglect your injections your body will yell at you!!! 😂

Rexz

[Rexz]

I've only done SC for the last four years. No experience with IM. BUT SC does work fine for me as my serum B12 is pegged at 2000 ng/mL, the highest level that the lab will measure.