Are there different strength b12 inje... - Fibromyalgia Acti...

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Are there different strength b12 injections?

Sandyp66 profile image
15 Replies

Although I've been having b12 injections for two yrs, my symtoms are getting worse, i have terrible sores in my mouth and nose, xx

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Sandyp66
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SelfAdvocacy profile image
SelfAdvocacy

I am not a doctor by any means but I’ve had these too on heavy fibro flares. Doc checked me for lupus as it’s a common symptom that can be masked. However it can be caused by many things, I’m only mentioning lupus as fibro and lupus are similar in many ways. My lupus testing at that moment said it wasn’t positive as testing for it is from continuing medical history and becomes a long list of what it’s not before they think it’s lupus. I don’t know the relation of b12 with the ulcers as I’ve never received b12. Hopefully someone who has can reply soon. When I have a flare I get many things that come to the surface that don’t diagnose as fibro but as separate issues developed from the flare and not vice versa, ie. hidradenitis suppurativa, sore throat, swollen glands, mouth and nose ulcers, acne, non-celiac ibs, PID infection, hpv active, etc…(all co-linked to fibro and autoimmune response). I’m a walking enigma when I have a flare. Seeing your gp when you have a breakout of these would help to determine why. Otherwise it can become a side symptom response and they just treat the symptom instead of digging for the elusive why. Keep a diary to compare when you get a b12 shot and all other miscellaneous things to the foods you’ve eaten to see if there’s a common factor to the break outs. They are painful, I’m sorry you have to deal with them. Hope you at least get relief for it.

Sandyp66 profile image
Sandyp66 in reply to SelfAdvocacy

Thank you, and totally agree with you on why doctors don't look for the cause.

Cotswolds25121 profile image
Cotswolds25121 in reply to SelfAdvocacy

Hi everyone,I have been having b12 injections for about three years and the first few times I’ve had them( every three months) I had no idea that you can have them more often when needed, so thank you all for that information. My dr has never told me 🤷‍♀️Anyway, they worked really well and I immediately felt the benefit but the past two times I haven’t felt that they have worked. I also haven’t been made aware that you can get different doses🤷‍♀️This is what I’m always banging on about, Drs aren’t giving us the full information needed🤦‍♀️As they haven’t worked as well lately I shall definitely be talking to my dr about what I’ve learned from you all! Why be suffering when the dr can give you the correct pain relief🙄god knows we all know we need it. I also have to take folic acid and aspirin each day for protein’c’ deficiency that is an inherited illness with the blood. My half sister had Lupis and I would like to know if that is similar to protein ‘c’ deficiency, if anyone can answer this for me I would appreciate it, thank you

Cotswolds25121 profile image
Cotswolds25121 in reply to Cotswolds25121

Forgot to say thankfully I don’t suffer with mouth ulcers, 1 thing I don’t have on my list 🙏🤞😀so sympathise with those who do though as they are very painful and make you feel quite miserable x

I take folic acid to prevent mouth sores; maybe ask your GP about these ..

Sandyp66 profile image
Sandyp66 in reply to

I will enquire, thank you x

rosewine profile image
rosewine

My friend who has to have regular B12 injections has now found she has to have them more frequently as the symptoms of extreme fatigue has been hitting her before her injection is due. Have your levels bee checked lately? I hope you get some answers.

Sandyp66 profile image
Sandyp66 in reply to rosewine

I'm also anemia they haven't done bloods for over two yrs, I've asked due to fatigue, it's like docs say blood safe level and then max fax told docs put me on iron as level too low, im fed up with the contradictions.

rosewine profile image
rosewine in reply to Sandyp66

Must be so confusing for you. My friend thought her fatigue was due to her age as she is 83 and COPD but it was thr lack of B12. I really feel for you.x

JKW1 profile image
JKW1

I know someone who was plagued with mouth ulcers, their Dentist explained that it was a reaction to an ingredient used in some tooth pastes. Sorry I can't remember any details, but it may be worth having a chat about it to your Dentist, good luck 🙋🌻

moo196 profile image
moo196

How often do you get Yr B12? I have mine monthly and definitely know if I get near the deadline.

JayCeon profile image
JayCeon in reply to moo196

5mg injections every 2 weeks was recommended to me...

Blueoxo profile image
Blueoxo

Hi, I have pernicious anemia which is treated with B12 injections. Standard treatment is a shot every 12 weeks. One of the symptoms of low vitamin B 12 is mouth ulcers. I found that after each injection I would be good for about the first 7-8 weeks but then the symptoms would come back with a vengeance. Extreme fatigue, aching , not being able to sleep, cognitive difficulties and bruising, moth ulcers etc. My doctor changed the frequency to every 8 weeks and that has made a difference. The symptoms are similar to those of fibromyalgia and before I was diagnosed with fibromyalgia it was suspected that it was the B12. The specialist did say that the effectiveness of the B12 injections is different for everyone, some people don’t have any symptoms once the start treatment, but for other it doesn’t get rid of the symptoms completely and some have to make life changing decisions regarding ability to work and socialise. I would go back to your gp to explore the option of whether you might try having your injections more frequently to see if this helps, I hope this is helpful and you manage to get it sorted out.

Jaycee18 profile image
Jaycee18

Hi, I’ve been having b12 injections for years. They make me feel queasy but I’ve never noticed mouth ulcers, though do take folic acid also. I don’t think there are different strengths, when my levels have been crazy low they have just jabbed me more often (every other day at one point ☹️). I would push to have your levels checked, Good luck.

JayCeon profile image
JayCeon

To answer the title question: Yes! I tried really high doses of 5mg every 2 weeks, and you can even get 10mg, but also there are 4+ sorts of cobalamin, whilst some research says the cheapest form, cyanocobalamin, is the least effective. After having no symptom reduction taking them orally, first cyanocobalamin, then a combination, I wanted adenosylcobalamin injections, but cdnt get it at the time (i.e. these forms in these doses ain't easy to get), so I took methylcobalamin 5mg. My B12-levels rocketed to more than double the maximum needed, which doesn't matter, it's just excreted. But that didn't help my fibro. Tried again 8 months later, didn't help either.

This is an overview of the 4 forms perniciousanemia.org/b12/fo...

This study (2015) definitely recommends to use the other forms: pubmed.ncbi.nlm.nih.gov/251...

This one (2015) says it doesn't make much difference, but the arguments are more theoretical: pubmed.ncbi.nlm.nih.gov/258...

Both are available free as full articles.

Regarding injections: Both say that oral (e.g. 1-2 mg) is just as good as injections (then less), unless there is a defect, e.g. genetic, of cobalamin metabolism....

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