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Pernicious Anemia
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13 posts in this topic

Oh, Yay, another autoimmune disease! So now I have this too, but hey, it's better than a poke in the eye with a sharp stick, right ;)

So my iron and B12 are low and I have neuropathy. I started sublingual B12 1000mcg about 2 months ago. I started prescription Ferrex about 2 weeks ago. When I started the Ferrex, I started taking 2000mcg B12, and got my first injection last week.

This somehow told my body to make the neuropathy worse :( I have to make an appt with my doctor to see her to get a shot (that means a 2 1/2 hour wait every time). I am wondering how often you all get shots, and if it's less now than in the beginning? I just need to know if I need to start planning on spending half of my work week sitting in my doctor's office :(:(

Thanks!

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If indeed you do have pernicious anemia the oral dosing of B12 you are taking is not high enough to be effective. Studies have shown that shots are not the only way to address perniciou anemia for some people. Apparently there is a passive mechanism of absorbtion that with high enough oral dosing does not require the normal intrinsic factor for assimilating B12. This passive mechanism is very inefficient, however, and requires 4000 to 8000 mcg daily to be effective. Not to worry, however. B12 is water soluble and therefore nontoxic, even in very high amounts.

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In addition are you certain the Ferrex is gluten free? Make sure you pharmacist checks it. The B12 injections should not increase your symptoms but getting glutened sure would.

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I don't get the shots. I take sublingual B12 in the form of methylcobalamin.

I wonder if it's possible that you are reacting to something in the shot--what is in the shot besides for B12?

As far as having another autoimmune disease, B2 deficiency is very common amongst celiacs due to absorption problems before going on the gluten-free diet, and after going on the gluten-free diet, not eating the "enriched" wheat products (B12 is in the "enriching").

Another common cause of B12 deficiency is long-term use of acid blockers--which many celiacs take because a common symptom amongst celiacs is GERD or reflux! These meds block production of the acid that happens to be needed to properly absorb the B12.

So it's possible that by continuing B12 therapy, staying gluten-free and, if you are currently on acid blockers, weaning down or even off them, you might be able to regulate your B12, in which case, you don't necessarily have another autoimmune disorder!

Of course, it's also possible that you do have another autoimmune disorder, or that you aren't amking adequate intrinsic factor, or any number of other things. But I like to think positive!

There are some good B12 deficiency/pernicious anemia websites out there--have you already found them?

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Most people I know has a loading dose like I did initially. Once a week for six weeks and then tapering down. I have one every three months now.

Don't you know someone who is an RN/LPN? They could easily give you the injection--it's not rocket science. You can even train someone around your house to do it for you--even yourself! You can get the syringes prefilled but drawing up the medicine is nothing. You use a whole vial so you can't overdose from one vial.

It makes a world of difference when it's at the right level.

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I started my B12 shots daily for two weeks, now I do weekly shots, at home. Your doctor can write you a prescription for them. A nurse at the clinic can teach you how to do them. Just check with your insurance company to see if they will pay for the shots you do yourself.

It actually hurts less if given into the tummy area. I was always doing them into my thigh when I first started. Another friend said her doctor showed her how to do them in her tummy with a Insulin needle. It took me two hours before I could stick that needle into my tummy, but wow, it didn't hurt like I thought it would. Unfortunately my tummy did not deflate!

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If indeed you do have pernicious anemia the oral dosing of B12 you are taking is not high enough to be effective. Studies have shown that shots are not the only way to address perniciou anemia for some people. Apparently there is a passive mechanism of absorbtion that with high enough oral dosing does not require the normal intrinsic factor for assimilating B12. This passive mechanism is very inefficient, however, and requires 4000 to 8000 mcg daily to be effective. Not to worry, however. B12 is water soluble and therefore nontoxic, even in very high amounts.

Can you take the 8000 all at once or does it need to be spaced out?

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In addition are you certain the Ferrex is gluten free? Make sure you pharmacist checks it. The B12 injections should not increase your symptoms but getting glutened sure would.

Yes, it is gluten-free, I had the pharmacist check before I filled it.

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I don't get the shots. I take sublingual B12 in the form of methylcobalamin.

I wonder if it's possible that you are reacting to something in the shot--what is in the shot besides for B12?

As far as having another autoimmune disease, B2 deficiency is very common amongst celiacs due to absorption problems before going on the gluten-free diet, and after going on the gluten-free diet, not eating the "enriched" wheat products (B12 is in the "enriching").

Another common cause of B12 deficiency is long-term use of acid blockers--which many celiacs take because a common symptom amongst celiacs is GERD or reflux! These meds block production of the acid that happens to be needed to properly absorb the B12.

So it's possible that by continuing B12 therapy, staying gluten-free and, if you are currently on acid blockers, weaning down or even off them, you might be able to regulate your B12, in which case, you don't necessarily have another autoimmune disorder!

Of course, it's also possible that you do have another autoimmune disorder, or that you aren't amking adequate intrinsic factor, or any number of other things. But I like to think positive!

There are some good B12 deficiency/pernicious anemia websites out there--have you already found them?

THe nurse told me it was only B12 in the shot. I take Aciphex for GERD. I was down to only taking it only every three days,until I had to start the Ferrex. It gives me terrible heartburn, so I had to go back to taking it daily. I have checked out some of the sites.

Thanks everyone for your help! I wonder if maybe the neuropathy is worse these last two days because nerves are healing? Getting worse to get better? Am I a ridiculous optimist? :lol:

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I started my B12 shots daily for two weeks, now I do weekly shots, at home. Your doctor can write you a prescription for them. A nurse at the clinic can teach you how to do them. Just check with your insurance company to see if they will pay for the shots you do yourself.

It actually hurts less if given into the tummy area. I was always doing them into my thigh when I first started. Another friend said her doctor showed her how to do them in her tummy with a Insulin needle. It took me two hours before I could stick that needle into my tummy, but wow, it didn't hurt like I thought it would. Unfortunately my tummy did not deflate!

Oh darn! Why couldn't they make a shot for that? :lol:

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A good web site for Pernicious Anemia is http://pernicious-anaemia-society.org/ They have a Forum. Some people are finding that methyl sublinguals before bedtime are more effective than taking it in the morning. Some find methyl injections done with insulin needles work well. Twice a week at first, then once a week etc. If you use B12 you must check your Folate and Potassium levels from time to time as well. I am doing the subcutaneous injections now and they don't hurt at all. I put an ice cube there for a couple of minutes, then its even easier. :) The sublingual tablets on their own were not enough for me.

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A good web site for Pernicious Anemia is http://pernicious-anaemia-society.org/ They have a Forum. Some people are finding that methyl sublinguals before bedtime are more effective than taking it in the morning. Some find methyl injections done with insulin needles work well. Twice a week at first, then once a week etc. If you use B12 you must check your Folate and Potassium levels from time to time as well. I am doing the subcutaneous injections now and they don't hurt at all. I put an ice cube there for a couple of minutes, then its even easier. :) The sublingual tablets on their own were not enough for me.

THanks Georgie! GReat resource!

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