Fewer Injections, more injections or stay the course? Please advise.

[RisingOne]

I have been injecting 1 ml of methylcobalamin and cyanocobalamin, eod, alternatively for about a month. Sometimes, the numbness in my hands feels like it’s getting worse and now my right leg is weak. Should I inject once a week or skip a week. Or, should I push through the pain, numbness and weakness, continue with eod. This is so frustrating! How long? All this is a result of my GP, prescribing PPI’s for GERD, which I took for about a year. My latest tests results show, folate, iron and homocysteine all in normal range, of course B12 is normal also due to eod injecting. HELP!

I started B12 injecting in Nov. 2021, but had no idea what I was doing, I would inject daily than stop and start again weekly, off and on. Took tablets, liquids, patches, etc. My GP, had no real understanding of B12 deficiency. It has been through this site that I really learned how to cope and manage with this most frustrating condition. My GP, after info from this site agreed I have PA, mild.

This site has been a tremendous blessing and help. Thanking you all in advance for your help.

[Nackapan]

I have tended to set a regime and stick to it .I was on EOD for ?5 months then seemed to plateau.

Then twice a week then weekly.

Then 2 weekly for over a yesr.

All over nearly 4 yesrs .

I've been on weekly for 18m now.

Its very difficult without medical guidance

I found it hard to decide when ' no further improvement was.

It also still not consistent .

'Shifts ' were slow .

Still are ....but happening

Its relatively early days

All very frustrating. .

I got alot worse before better

[RisingOne in reply to Nackapan]

Nackapan, I cannot thank you enough for all your help, guidance and patience! Thank you! thank you! thank you! I was hoping that you would respond! When you write your book (and you should), I will buy many copies and give them out the so-called medical profession. Your advice has helped me more than my GP, who also learned from you and this site.GOD BLESS YOU👏👏👏👍

[jade_s]

Stay the course, as frustrating as it is

The first many months are known to be a roller coaster of symptoms. It often gets worse before getting better. Unfortunately!!

My last symptom to appear was the first to disappear. Are you keeping a symptoms log?

I would also say take a look at your log or pay attention to the days off and the methyl days. Do you feel worse specifically on those days? If so you might be better off with daily. Cyano loading doses are daily & I think with methyl you might need higher doses to get the equivalent of 1mg cyano.

[RisingOne in reply to jade_s]

Thank you, Jade_s, I greatly appreciate your advice and experience in this situation.

[Midnight_Voice]

Hi

If you don’t mind me asking, why are you alternating two different forms of cobalamin?

[RisingOne in reply to Midnight_Voice]

Not at all I, was trying to determine which one was more helpful, so far no major difference, I can notice. Most info I have read said there is not that much difference between the two other than time in body and absorption.

[Gen89]

Just wanted to ask if you have managed to stop the ppis? I had borderline b12 levels which had been decreasing over several years on omeprazole. For the last year have been trying to stop the ppi,which I took as I take naproxen, but I can get down to once weekly but then get gord symptoms if I go much longer.

[RisingOne in reply to Gen89]

Yes! I had terrible GERD, caused all my B12 problems two items that worked very well, RefluxGourmet and Tropical Papaya, both available at Amazon. Slowly improving. Hope this helps. Gen89

[Gen89]

Thanks 😊

[WiscGuy]

When it comes to treatment for neurological symptoms caused by B12 deficiency, we are all on our own. Doctors can't help much because very little research has been conducted. Search the research databases: Google "Google Scholar", click on the selection for Google Scholar, and a page will open with Google Scholar in big letters and a search box in the middle. Enter these search terms: B12 deficiency treatment review. The list of research articles that appears will include mostly papers that review research on B12 deficiency. Nearly every systematic review of research on treatment of B12 deficiency will say that existing research of treatment for B12 deficiency is of poor quality. They say better quality research is needed, and it will have more people, the subjects should be randomly assigned to treatment groups, and research projects should last for years, rather than the days or weeks that have been typical of research to date. I have reviewed the abstracts of many of the poor-quality reseach studies that exist, and the following summarizes my impressions: patients who have received more B12 have generally done better than patients who received less B12; and patients who have received B12 more often have generally done better than patients who have received B12 less often. Also, there is no indication that B12 is toxic at any dose. Again, these are my impressions, not the result of systematic study.

With all this in mind, after my doctor had, in good faith based on bad advice from other doctors, put me on a regimen appropriate for patients with blood symptoms rather than nerve symptoms (daily injections for a week, weekly injections for a month, then monthly or less frequent injections), which is generally insufficient for patients with neural symptoms and my symptoms had returned worse than before I had begun treatment, I decided to inject B12 daily, which seemed to me to be a no-brainer, since I wished to recover functioning that had been lost due to B12 deficiency, and the greatest risk in B12 treatment seems to be under-treatment, and there seems to be no such thing as risks related to over-treatment.

[RisingOne in reply to WiscGuy]

WiscGuy, the info you have given here is very beneficial, I received more help from this web site and the Pernicious Anemia (perniciousanemia.org/), and folks like you thank you.