I feel no better after 3 months of B1... - Pernicious Anaemi...

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I feel no better after 3 months of B12 injections

huggabugga profile image

I have been self injecting 1,000 mg of cyanocobalamin every day or every other day for the last 95 days.

The first week or two, I felt a difference. I had more energy, my thinking was clearer, etc.

Then I felt no improvement. I still haven't felt any improvement since those first two weeks.

I know it is common to feel worse before you feel better, but that is not the case for me. I don't feel worse. My symptoms are exactly the same.

Is it still possible that I could recover?

14 Replies

It takes 4 months for your red blood cells to die and be replaced with new ones though. You're at 95 days, so why not continue to 120?

huggabugga profile image
huggabugga in reply to Sammyo23

Okay! I will wait another month and see if I start to feel some changes. I have had symptoms of Pernicious Anemia for 10+ years, so I suppose it takes a while to heal. I just got worried since I wasn't feeling any difference after the first two weeks.

Well not wanting to be a cheer germ but I have been having B12 injections for about 20 years and have never felt any better infact I,m feeling a bit worse each year.I have no idea why perhaps I don't have PA.

Really very perplexing and really anoying

If you ever feel better please let me know what you have done that helped.

mcg-woo profile image
mcg-woo in reply to Chucknz

Finding an adequate injection schedule to keep symptoms at bay helped me feel better. That is the key if we are talking strictly PA and no other health issues. Other health issues=more complicating factors. For me to feel better that meant moving from two monthly injections, to weeklies, cut back to biweekly and then to weekly, where I am now and I’m feeling pretty good. Perfect? I don’t think that exists with PA, but compared to the place I’ve come from, it’s pretty darn close. People say to me all the time, “I don’t know how you self-inject, I could never do that.” To which I reply, “If you felt as bad as I did and you knew the injections would keep you from feeling that way again, you’d do it, too.” Best of luck to you. I hope you feel better soon.

Sammyo23 profile image
Sammyo23 in reply to mcg-woo

When you've been here, you understand that there's no other choice.

mcg-woo profile image
mcg-woo in reply to Sammyo23

Exactly!

Try to be patient and not be discouraged. If your b12 was very low and you were very symptomatic, recovery will take some time. It takes a full year for the brain to recover, so even though your bloodwork may show decent levels, you are not going to feel well for a while. You could also consider changing to a different form of b12? I did not have loading doses and once I received weekly doses, they were cut back to biweekly before I was asymptomatic. I felt so much better that I didn’t realize it at the time. This surely delayed full recovery for me, but I continued to slowly improve for a couple of years and now that I am consistently on weeklies, I now realize I wasn’t in full recovery and had further to go. I still struggle some, if my levels aren’t just right, I feel it. Hang in there and keep it up, you will get better. Could something else also be going on with you? Something to consider. Good luck!

huggabugga profile image
huggabugga in reply to mcg-woo

Yeah I have had symptoms of Pernicious Anemia for 10+ years so I suppose it could take more time for me to feel better. I just felt discouraged since I haven't felt anything since the first two weeks of injections.

mcg-woo profile image
mcg-woo in reply to huggabugga

Oh yes, 10 years with no treatment is a long time. My symptoms came on gradually over a period of many years—at least 5 or more before proper diagnosis. This is a sneaky disease in that symptoms are so gradual that they become normal to the patient and it takes so long to get a proper diagnosis along with the misdiagnoses. One doesn’t realize something is wrong until symptoms become so severe that it forces the person to seek medical attention again and again for some. I can understand how you might be frustrated feeling great and then feeling like you’ve plateaued. You will never feel that dramatic effect again like one feels in the beginning of treatment—whether good or bad unless maybe there’s a lapse in treatment. From my experience, once treatment is consistent, there’s a gradual improvement-so gradual that you might not even notice it. Your goal is to just feel normal. That’s what it’s like for me-proper treatment just makes me feel normal again. Stick with your injections and give it time. Hope you’re feeling better soon!

JanD236 profile image
JanD236 in reply to huggabugga

Can I ask what tests you had before deciding to si and what were the results?

huggabugga profile image
huggabugga in reply to JanD236

MMA low, HOMOCYSTEINE normal, RBC normal, B12 normal.

My results wouldn't point to a diagnosis. But at the same time, I had been taking B12 supplements for a year. So why did a feel such a huge burst of energy the first two weeks on B12 injections?

Is it possible that what is wrong with you is something else?

I’m slightly puzzled that if you have been diagnosed with PA you have had to self-inject from the get-go.

We know that the recommended 2-3 month injection schedule is woefully ineffective for many, but you surely should have had loading doses administered by a medical practice initially?

I asked my doctor if I could self inject rather than having to drive out to the hospital every few days to get injected by someone else.

In terms of what else could be wrong with me, I have no idea. I have been tested for every autoimmune disease in the book. I have high ANA levels so I know I have *some* kind of autoimmune disease. I have thyroid antibodies so I tried a bunch of thyroid medications but none of them ever worked.

JanD236 profile image
JanD236 in reply to huggabugga

I think I would be reducing the B12 injections and asking my Dr to investigate further the high ANA levels, particularly other illnesses more usually indicated by high ANA.

Maybe thyroid levels should be tested again too in view of the antibodies.

I wish you luck finding an answer, this must be very frustrating knowing something is wrong but not being able to pinpoint what that is.

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