Vitamin B12 Injections

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by a-vivaldi, Mar 30, 2008.

  1. a-vivaldi

    a-vivaldi New Member

    Can anybody offer some advice on taking Vitamin B-12 injections? I thought that most CFS/ME/FM patients injected themselves in the fat of the stomach or sides, meaning subcutaneously. I just received a vial of B-12 from my local Walgreens(Watson Pharma), but the label says "only for intramuscular use".

    I know that intramuscular means the type of shot you get in the arm, not the fat of the stomach. Does anyone know if it's still OK to use this type of B-12 subcutaneously?

    Of course I'll be checking with my doctor on this, but wanted to hear any words of wisdom from fellow CFS/ME/FM patients. Thanks!

    A-Vivaldi


  2. pjpreneur

    pjpreneur New Member

    That is interesting . I took B-12 injections intramuscularly in the mid 90s and stopped for years. Dr. Cheney just put me o them subcutaneously. The odd thing is, it feels like it just sits under my skin for days. I have been using my thigh like I did IM but maybe I shoudl go into the stomach. Only about 3 weeks, no helpful change yet. Still hoping
  3. Linda_angel

    Linda_angel New Member

    injections given to me in my shoulder. I'm just not liking the pain when I've given it to myself in the upper thigh so for me...it's been IM.

    L_^i^
  4. spacee

    spacee Member

    Hey, it works for me..thankfully. I took the B-12 for 16 years and I know I started out with the big needles. Somehow along the way I switched...maybe I was giving my son allergy shots and started using his.

    I stopped taking the injections for about 4 years...major mistake. They are wonderful. Even if I am just at home all day, I would rather feel good at home than bad.

    Spacee
  5. K5VLK

    K5VLK New Member

    Hi Vivaldi, I just started B-12 shots and I do it in upper thigh with 24 gauge needles. What size are you using? Pinch it up real good before "throwing" it in, it doesn't hurt, surprisingly. Amazing diff to me. Good luck.
  6. K5VLK

    K5VLK New Member

    Hi Vivaldi, I just started B-12 shots and I do it in upper thigh with 24 gauge needles. What size are you using? Pinch it up real good before "throwing" it in, it doesn't hurt, surprisingly. Amazing diff to me. Good luck.
  7. Meg1710

    Meg1710 New Member

    It was always thought that the only effective way of receiving Vit B12 was via injection.

    However Vit B12 Methycobalamin given sub lingually is nowadays an effective form, as it is already in its metabolically active form and does not rely on digestive function for absorption.

    I purchase mine from iHerb over the internet. Their link is: http://www.iherb.com/ProductsList.aspx?c=1&cid=1746

    This link explains methylcobalamin quite well and there are others.
    http://naturedoc-nutrition.com/methylcobalamin5mg.htm
  8. doxygirl

    doxygirl New Member

    Did you have to have a script to purchase this b12.....just curious as I always thought you had to have a script for it?

    Also....the pharmacies in my area give me a VERY hard time when I try to purchase needles.....

    My little dachshund has diabetes and we have to give him insulin twice a day.....every time I go to purchase needles the pharmacies ask me about 10 questions and then when Iam done answering them they say " sorry we cannot sell you needles without a script".

    I finally had to get a script from my vet so I could purchase them without a hassle!

    Iam sorry I did not mean to change the subject here...just wondering if you have trouble getting the needles and if you b12 was purchased without a script ......

    I do hope they help you ...and please let me know if you had a script or not as Iam considering taking them myself!

    Hugs
    Doxy
  9. a-vivaldi

    a-vivaldi New Member

    K5VLK

    I don't have any needles yet - still trying to determine if I can use the intramuscular B-12 product subcutaneously.
  10. a-vivaldi

    a-vivaldi New Member

    Thanks, Meg.
  11. a-vivaldi

    a-vivaldi New Member

    Doxygirl,

    Yes, you need a script for both the B-12 injections and the needles.
  12. harmony21

    harmony21 New Member

    jsut a little subnote My doctor gives me mine in the upper arm, you can get them via script or over the counter your choice

    I have had 6 weekly ones and have found so fat they dont do too much, this week i have slept most the days away

    but Iam still hoping

    Angel hugs
    Connie
  13. IowaMorningGlory

    IowaMorningGlory New Member

    I have been trying to get my general practitioner to prescribe b12 shots for about 6 months now. I go in tomorrow and am giving it another DETERMINED shot.

    Need to know:

    What levels for B12 ar "normal for FM" (I read anywhere from 300 to 540pg/ml.

    How long for initial daily IMs? Then what is protocol after initial daily therapy? What is the general dosage?

    I have researched online and found only OLD articles and would really like something more recent to take with me, or some general guidelines anyway.

    I live in a rural area. My Rhuemy moved and I was referred somewhere else and they are not taking patients right now, and no FM doctors even remotely close to my area. Soooo I am relying on my GP, who up until about 6 months ago was great, but I think he is really getting tired of me being sick. (just imagine how I feel :)

    So anyone who could help me would be greatly appreciated.

    Thanks a bunch,
    Iowamorningglory :)
  14. spacee

    spacee Member

    google Paul Cheney, MD, PhD B-12 and you will find his recommendations. He has you stay on them. I just print that out and take it to my doc.

    Spacee
  15. IowaMorningGlory

    IowaMorningGlory New Member

    Would you be able to give me a specific web address for the info, when I google I find information overload but no specifics.

    Greatly appreciated,
    Thands a bunch,
    Iowamorninglory :)
  16. spacee

    spacee Member

    Here are a couple of ways to try to find it. The info is at the web site of National CFIDS Foundation...ncf-net.org

    If you enter by the home page site, you go to "resources' and click on that. Their library articles will come up. Then you have to scroll down a looong way to "Procotols"

    There you will find Dr. Cheney 1998. After you click on his article, you have to scroll a looong way again to "Treatments". He addresses B-12 in "Level 4".

    Here is the www.ncf-net.org/conference/cheneylecture.htm-11k.

    Dr. Cheney recommendations for high doses of B-12 have not changed in all these years.

    Hope you find it, if you don't...we will try again.

    Spacee
  17. IowaMorningGlory

    IowaMorningGlory New Member

    Well my physicians nurse called today and they put my appointment off until thursday! They are only taking acute cases today because of a couple ambulance calls. So, I have a little more time to be able to take him specifics.

    I found the info on how much Cheney recommends but I still need for how long a regimen to do.

    What do you or did you or anyone start with? For example:

    What was the specific dosage your doctor started with and for how many weeks? Did you do it yourself at night like Cheney recommends?

    How many weeks did you start with and did you do it daily?

    After the initial weeks of therapy (What I have read is anywhere from 7 to 12 weeks initially everyday) how often do you get injections now?

    Is it specifically called Vit.B12 or is there a specific name of what you are given?

    I just want to go in prepared because I know he isn't going to have a clue as to what to give and when and he is going to have to have good reason for my insurance company to cover the shots if they are everyday for a couple months.

    Any help would be great. Thanks a bunch.
    Iowamorningglory :)
  18. IowaMorningGlory

    IowaMorningGlory New Member

    Using Vitamin B-12 for the Management of CFS

    by Charles W. Lapp, MD

    Dr. Charles Lapp specializes in internal medicine and pediatrics. He practices at the Hunter-Hopkins Clinic in Charlotte, N.C.
    Reprinted from November/December 1999 issue of The CFIDS Chronicle, PO Box 220398, Charlotte, NC 28222-0398, 1-800-442-3437. (c) 1999 The CFIDS Association of America, Inc.

    History

    In the late 1980s, Dr. Paul Cheney and I heard several anecdotal reports of chronic fatigue syndrome (CFS) patients who improved when their primary care physicians administered B-12. Given the scarcity of effective treatment options for CFS, we set out to try various doses and preparations in our own patients. This treatment was based on three articles that appeared in the New England Journal of Medicine demonstrating that persons with CFS-like neurological symptoms and normal blood counts could benefit from the administration of vitamin B-12 injections.

    In these patients, problems such as numbness or tingling in the extremities, abnormal gait, memory loss, weakness of the limbs, changes in mood and personality and even fatigue were improved, and even resolved, with B-12 therapy. In addition, during this period of time Dr. Les Simpson was describing how changes in the red blood cells in persons with CFS reversed when high doses of B-12 were administered. With this in mind, we began treating patients with cyanocobalamin (a form of vitamin B-12 that is readily available in the U.S.) at doses from 1000 mcg weekly to 5000 mcg three times weekly, given subcutaneously (through injections under the skin).

    Patients appeared to have a significant response at approximately 2000-2500 mcg, and reported increased energy levels, improved stamina or an enhanced sense of well being within 12-24 hours of administration. The effects lasted two to three days on average. However, many patients required up to six weeks to achieve regular, consistent results, and a wide range of dosing proved to be effective, from 1000 mcg injected daily to 5000 mcg injected three times per week. To obtain a continuous and satisfactory level of improvement, we now recommend injections of 3000 mcg of cyanocobalamin every two to three days.

    An informal poll of our patient population revealed that 50-80% improved to some extent with this simple therapy. However, we found that oral or nasal spray preparations of B-12 did not produce a demonstrable effect.

    Scientific explanation

    The vast majority of our patients had normal serum B-12 and folate levels prior to the start of therapy, which indicates that routine laboratory tests may not reveal a deficiency. It also suggests that our therapy was effective because vitamin B-12 was not being absorbed or utilized properly by individual cells.

    Difficulties can arise at any point during metabolism of B-12, resulting in many negative effects on the body, including nerve damage. Potential problems can include:

    Transport failure-the B-12 does not make it through the cell wall from the bloodstream. This is problematic because once inside the cell, B-12 functions as a cofactor, which means that it helps start important chemical reactions that allow the cell to function.

    Failure to degrade completely-if the process of metabolism is working correctly; the B-12 compound is broken down in a series of reactions. When the enzymes (synthetase and reductase) that facilitate those reactions do not do their job, chemical byproducts can build up and nerve cells can be damaged.

    Dietary insufficiency-this rarely happens because many of today's processed foods are supplemented with vitamins, including B-12.

    Research findings

    Studies from SpectraCell Laboratories using the EMA technique (which measures the metabolic response of a patient's blood cells to individual nutrients) demonstrated that more than 70% of 66 individuals with chronic fatigue-not necessarily CFS-demonstrated B-12 deficiency, compared to about 40% of the normal population. It follows logically that individuals with chronic fatigue syndrome would also experience abnormalities in B-12 metabolism.

    At the Cheney Clinic, we measured homocysteine and methylmalonate (organic acids that are elevated when B-12 is not metabolized properly by cells) in CFS patients. Homocysteine was elevated in 33% of the individuals tested, methylmalonate in 38%, and both were elevated in 13%. Thus, about one third of CFS cases could perhaps have symptoms attributable to B-12 deficiency.

    Researchers have hypothesized that the B-12 deficiency seen in CFS may be due to a genetic abnormality...

    However, my experience suggests that inability to transport B-12 across the cell membrane is the major cause of abnormal B-12 metabolism in persons with CFS, because large doses of B-12 markedly improve cognitive ability, mood, irritability and numbness and weakness in a majority of patients. Those who respond poorly to high doses of B-12 may have low reductase activity. The latter should improve somewhat if they supplement their diet with folic acid, which helps improve the action of this crucial enzyme. I generally recommend 1 mg of folic acid daily, in tablet form, for those individuals who do not respond well or at all to B-12 injections.

    Administration

    Two forms of B-12 are available to consumers: cyanocobalamin and hydroxycobalamin. Of the two, I have always preferred cyanocobalamin because it is less likely to cause adverse reactions and stings much less than hydroxycobalamin when injected. The cost of high-dose B-12 therapy is approximately $8 to $10 per month.

    Patients can be taught to administer their own injections of B-12 using the same 1cc insulin syringes diabetics use. They will need to obtain a supply of the B-12 solution from their physician- cyanocobalamin is typically prepared in 10 ml or 30 ml multi-dose vials, and should be stored in a cool dark place because both heat and light degrade the product rapidly. A cabinet or refrigerator is satisfactory.

    Large doses of B-12 could theoretically compete with other B-vitamins in the cell, so to prevent deficiencies I always recommend that patients starting injections supplement their diet with multivitamins containing B-vitamins as well as folate.

    Toxicity and Adverse Effects

    Toxicity or "poisoning" from cyanocobalamin, a form of B-12 that is combined with very small amounts of cyanide, has been the major cause or patient concern about high-dose B-12 therapy. I have not encountered any evidence of cyanide toxicity. The amount of cyanide administered is so minuscule that it affords a wide margin of safety even at doses of 15,000 mcg per week. Although this dose may seem inordinately large, medical textbooks have long recommended doses of 1000 mcg per day (or 7000 mcg per week) for the treatment of nerve problems due to B-12 deficiency. The only exception is in individuals with kidney failure. In patients with normal B-12 levels and intact kidney function, excess cyanide and B-12 are simply excreted through the urine.

    I have recommended high-dose B-12 to thousands of patients over the past 10 years and have seen no serious adverse side effects. The major complaint about B-12 from patients is bruising at the injection site. This is harmless, goes away quickly and can usually be eliminated by inserting the needle perpendicular to the skin or using a longer needle. The "bruise" may actually be accidental leakage of the crimson-colored B-12 solution under the skin.

    Although some drug references indicate that idiosyncratic reactions are not uncommon with B-12, I have only had one patient who developed hives and chills after an injection, and even that person could tolerate occasional small doses.

    A rare individual will develop a raised red bump at the injection site, but this is usually attributable to agents added to the B-12 solution to inhibit the growth of bacteria in the vial and not the B-12 itself. In such cases, the pharmacist can prepare small vials of B-12 without the bacteria-inhibiting agent. With high doses of B-12, an acne-like rash also may occur, but the rash usually responds promptly to a reduction in dosage.

    Some patients respond so well to B-12 that they become hyperactive-nervous and excitable-but this too can usually be resolved by reducing the dose. Because of this excitatory effect, I recommend that B-12 be administered in the morning, so that it will not interfere with sleep.

    Very rarely, a patient's urine will be faintly pink-tinged following a dose of B-12. This "cobalaminuria" occurs intermittently, and although it looks alarming, seems to be entirely benign.

    Is B-12 therapy for you?

    B-12 injections are an effective, safe and inexpensive treatment in the management of CFS. There is evidence that B-12 metabolism at the cellular level is abnormal in persons with CFS, possibly due to reduced transport of the vitamin across the cell membrane or abnormalities in the enzymes that help break it down inside the cell. The mechanism has yet to be defined, but in my clinical experience, large doses of B-12 provide improvement in energy and well being in a majority of CFS patients. Persons with CFS who are interested in B-12 therapy and are willing to take an injection two to three times a week should consult with their physician.

    Source: Charles W. Lapp, MD

    Things to keep in mind about B-12 therapy
    - Don't rule out therapy because of test results. Blood serum levels do not necessarily reflect a deficiency, so you may need more B-12 even if your test results are normal.
    - You must be comfortable with injections. Many individuals are not willing to get a shot two or three times a week. Unfortunately, the oral or nasal spray preparations are less effective than injections.
    - You can administer the shots yourself. If it is more convenient for you to inject yourself with B-12 at home, you can ask your physician to show you how and provide the injection solution.
    - Report adverse reactions. Be sure to tell your physician immediately if you experience a rash, skin discoloration, chills or any other reaction following the injection.
    - B-12 does not interact. There have been no reported instances of B-12 interacting in a negative way with medications or other nutritional supplements, so you can rest easy if you are taking other substances to treat your CFIDS.
    - Take a multivitamin a day. B-12 can potentially hinder your absorption of other vitamins-taking a supplement can help prevent additional deficiencies.
    - Results might not be immediate. It takes up to six weeks to see improvement with B-12 therapy, so be patient.

    Thanks for all the help and if anyone else needs this...well,here it is! :)

    Everyone take care,
    Blessed Be,
    Iowamorningglory :)
  19. spacee

    spacee Member

    That was a great post by Dr. Lapp. He was once Dr. Cheney's partner. I see that they disagree abit on B-12.

    Dr. Cheney has you use 10,000 mcgs Hydroxy. And you take it every day for the rest of the time you have CFS. It pulls the toxins, particularly mercury out of the brain.

    At one time Dr. Cheney used the cyano. B-12 but evidently he changed at one point.


    Since I was Dr. Lapp's patient at one time in the 1990s, I have used the three times a week and the cyno. That may have been enough for me for some time. But I quit using it for about 4 years and now I have started back. I can tell that I need more of it. The days I don't take it are too draggy.

    Ok, So Dr. Cheney wants a person to take it every day and other docs don't. I can really see why. You get tired of those needles after a while.

    I noticed that Dr. Lapp uses INSULIN syringes. Those are tiny little things. So, that explains why my allergy syringes work for me.

    Thanks MG for posting this.

    Oh, how did I first get my B-12 shots. I lied. (snicker). I had moved and I only had a gyn. I told the Gyn that my specialist in Orlando wanted me to have the B-12 shots (that was the regular kind in the office). I knew my specialist was taking a leave of absence and would not be in his office to verify this!

    So, when I got my new pcp (which took some doing cause no one wanted me to be their patient), he was just a more agreeable type who would do what I brought in a CFS specialist had recommended. That is when I started getting an RX and mailing to a compounding pharmacy and using 5,000 mcgs three times a week for 16 years.

    I am on my second refill of my new start up.

    Spacee

  20. IowaMorningGlory

    IowaMorningGlory New Member

    The end results with the gyn and your physicians are all that matter! Sometimes we just gotta do what we gotta do to get where we need to be. Good for you!

    I am hoping things go well at convincing my GP, I don't see why not...but you know how that goes.

    Thanks for your input now I know where to suggest for him to start. (5000mcg 3x's/wk and I should be able to give my own shots and can get a script for the insulin syringes)

    Do you do your shots a certain time of day? I read at night is best but does it really matter?

    Also, where do you give yourself most of your shots? Do you alternate with arm and stomach?

    Real pest aren't I? :) I am glad you were here to be able to talk with, it has helped immensely. I wish I could have went in today. Today has been one of my most laggy days I have had in weeks...I just hurt all over, knees ache really bad, and just feel like mush. (Quite a description huh!)

    Thanks once again & take care,
    Iowamorninglory :)