vitamin B12: I had look in FAQ and could not see... - PMRGCAuk

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vitamin B12

Susan1705 profile image
58 Replies

I had look in FAQ and could not see any reference to the role of vitamin B12 in either PMR or GCA. A colleague recommended B12 injections to alleviate the symptoms, pain and fatigue. I am sceptical of anecdotal suggestions. Has anyone heard about this supplement or tried it?

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Susan1705
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SnazzyD profile image
SnazzyD

Do ask them for their source. I don’t know of any but low B12 can cause fatigue and muscle aches but that isn’t PMR.

PMRpro profile image
PMRproAmbassador in reply to SnazzyD

This is an interesting link between GCA/PMR and vit B12 and folate, But it does specify they looked at it AFTER steroid induced remission. I wonder if someone got hold of the wrong end of the stick?

pubmed.ncbi.nlm.nih.gov/127...

Susan1705 profile image
Susan1705 in reply to PMRpro

thank you

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Are you deficient in Vit B12?

Do you have anaemia or any other illness or on any medication that depletes B12?

Or are you a strict vegetarian/vegan and don’t eat enough of the appropriate foods,

HeronNS is our Vitamin expert, so sure she’ll be along to reply

Susan1705 profile image
Susan1705 in reply to DorsetLady

hi no anaemia, I am vegetarian and have been for 51 years now. I only started to experience fatigue since I was prescribed methotrexate in June 2021 along with pred when I was diagnosed with GCA. I already had PMR and pred controlled this nicely, with the exception of occasional flares and hitting too lower dose. I am looking to come of the methotrexate when I next see my rheumatologist

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Susan1705

Personally never took MTX - but fatigue is a side effect - so probably good idea to discuss with Rheumy.

What Pred dose are you on at the moment moment?

As for B12 - I don’t think there’s enough evidence to put it on your list ….

Susan1705 profile image
Susan1705 in reply to DorsetLady

Hi, am currently on 7mg for 3 months. Was trying to reduce down to 6mg, and was struggling even following DSNS tapering, so rheumatologist suggested I stay on 7 as am mostly pain free and less stiff. Was on 20mg methotrexate and reduced down to 15 in Jan. Am due to see rheumatologist end of May and will review and hopefully be off the methotrexate.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Susan1705

When you try to reduce again -stick to DSNS. - but also try only 0.5mg drop.

Adrenals will also be coming into play -so that may account for fatigue as well. Have a browse through this -

healthunlocked.com/pmrgcauk...

discoballs profile image
discoballs in reply to DorsetLady

Oh my on the MTX my Doctor is chasing my Roomy about my MTX starter prescription. I am a little afraid!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to discoballs

You can only try it -if it doesn’t suit then you can come off if again with too much issue. It’s good for some - so give it a whirl…. And fingers crossed it is for you

PMRpro profile image
PMRproAmbassador in reply to Susan1705

It was fatigue that stopped MTX for me - I couldn't put one foot in front of the other! Never had the problem at any time with pred alone.

Susan1705 profile image
Susan1705 in reply to PMRpro

yes, am sure it is the methotrexate. 1mg either way with pred makes all the difference. Dropping from 20mg to 15 had 0 effect

PMRpro profile image
PMRproAmbassador in reply to Susan1705

I just said no to MTX, I couldn't face feeling like that for even a few months.

discoballs profile image
discoballs in reply to PMRpro

That's educating me a bit.... Shall I shan't I? MTX

PMRpro profile image
PMRproAmbassador in reply to discoballs

I think you try it - on the understanding if it doesn't suit or work for you you stop. That is what I did and my rheumy was fine about it.

GerriMc profile image
GerriMc in reply to discoballs

Try it. It worked for me. I’m off it now and down to 2mg Pred a day. Yes MTX made me feel tired but only on the day after I’d take it. Also, if you take it at night, I think you sleep through the worst of it.

But if it doesn’t work, as others have said, you can always just stop taking it.

Best of luck!

discoballs profile image
discoballs in reply to DorsetLady

I'm a vegan of about one decade and a vegetarian of about 4 decades + and always take supplements. Lately I've been drinking a bottle of Huel every other day. It's loaded with what I need

HeronNS profile image
HeronNS

I don't suppose Vitamin B12 would help PMR symptoms unless you happen to have a Vitamin B12 deficiency. Personally I would not dare try anything to treat GCA without guidance from a physician.

People on pred who are still experiencing pain presumably are not taking enough pred. If the fatigue is not caused by a Vitamin B12 deficiency then it likely won't be helped by taking that vitamin. I don't think I had PMR-caused fatigue, but I certainly had fatigue for a time as my body became used to taking pred, but it was time for my adrenals to start producing their own cortisol again! Does Vitamin B12 help with that? Maybe someone knows.

Achieving a pred dose which controls the symptoms is what we do for the first couple of years, very slowly lowering our initial dose, which will be too high for continued use, but important to clear away all the accumulated inflammation. Once we achieve a level which controls the symptoms, then we may have to stay there for some time, but that's usually a fairly low dose which has far more benefits than harm.

Many have found that modifying diet can make one feel generally better as well as reducing chances of pred-related weight gaine (this gain is not inevitable). But with the exception of Vitamin D and Calcium not much else is ever prescribed. I believe we should all be told to take Vitamin K2 (not K1) as well, as this is very important for maintaining bone health and many if not most of us are deficient in this vitamin.

I, too, would be interested to learn if anyone has found Vitamin B12 helped any PMR symptoms, particularly if they were not B12 deficient.

Susan1705 profile image
Susan1705 in reply to HeronNS

many thanks, was just checking if there reasonable evidence. I thought I would have heard if B12 was a link

HeronNS profile image
HeronNS in reply to Susan1705

I agree. It seems only sensible that if something as simple as Vitamin B12 supplements, or giant doses of Vitamin D, or any one of a number of other proposed solutions were really effective that's what we'd be treated with, especially considering how terrified some doctors seem to be of pred! I mean, even if they worked as "steroid sparers" so we could take much lower doses from the beginning it would be great, but it seems there's no evidence.

Susan1705 profile image
Susan1705 in reply to HeronNS

I am sure people mean well, I have all sorts suggested to me. I knew if what not something I had seen in research on the site.

PMRpro profile image
PMRproAmbassador in reply to Susan1705

People always think they know someone who cured something with a totally bizarre approach ...

HeronNS profile image
HeronNS in reply to Susan1705

I guess many of us have well-meaning friends who hope their suggestion could help us. My latest problem is a friend who keeps trying to find volunteer jobs for me. I did a lot of volunteering in a former life but somehow now sorting through "archival material" is singularly unappealing. Especially as I have a home full of "archival material" (although not the historically valuable type) which requires my attention . :D

How do I say "No" without hurting her feelings?

discoballs profile image
discoballs in reply to HeronNS

I get approached about volunteering my Google skills but as my energy levels ebb and flow I get out of it by just saying so

HeronNS profile image
HeronNS in reply to discoballs

I have told this to my friend in the past when she somehow finagled me into agreeing to serve on the Board of her organization by misleading me into thinking I would just be helping out a Communications Coordinator only to find I was the Communications Committee in its entirety 😱. I may babble on incessantly here, but in real life am very shy with strangers. Not who you want as the main outreach person! I told the President and he understandingly accepted my resignation, and I told my friend that because of PMR (this was relatively early days) I really was not the same person I used to be and could not manage even minor stress. (Actually just recognizing who I've really always been.)

Debating offering my services to helping sort food behind the scenes at our church's food bank. Now that I have an elastomeric mask it should be safe enough to be in the veritable covid soup our city seems to be these days!

PMRCanada profile image
PMRCanada in reply to HeronNS

Perhaps you could mention that you would like to choose your own type of volunteering that suits you best, but thanks for the suggestion.

HeronNS profile image
HeronNS in reply to PMRCanada

Sending private message.

HeronNS profile image
HeronNS

I should add that many years before PMR when I was diagnosed with osteoarthritis (correctly, you can see it in my hands and feet without x-rays) I discovered that Vitamin B6 seemed to help. For a while I took that only, then not wanting to get an unbalanced amount of B vitamins I started to take a tablet with the complete B complex, and still do. I think it helps the OA, at least a couple of times when I tried to stop taking it I felt noticeably worse. Have not experimented for a long time!

agingfeminist profile image
agingfeminist

I assume you have had a blood test for B12 deficiency. As a long-term vegetarian it is a good idea. If there is no deficiency then a B12 supplement isn't needed. The fatigue associated with our disease/medication/ reduction of medication (adrenal insufficiency) is so debilitating (physically and emotionally). Wise, informed people on here are reassuring that it will pass...but it can take time (years for some of us). I am learning patience ...not my natural disposition!

Susan1705 profile image
Susan1705 in reply to agingfeminist

I have blood tests every month not sure if they test for that. Though given that I have never had fatigue or other symptoms related to depleted B12 until I got PMR I assume I don’t have a problem

agingfeminist profile image
agingfeminist in reply to Susan1705

as you are a vegetarian it is worth checking. It has to be specially requested.

HeronNS profile image
HeronNS in reply to Susan1705

I'm a vegetarian (but eat dairy and eggs and very limited amounts of fish). My husband is not. He's the one with B12 deficiency. My doctor tested me last year (I didn't ask) and level is fine. Perhaps vegans would have more of a problem. According to Google there are some veggies including "spinach, beetroot, butternut squash, mushroom and potato (which) contain good amounts of vitamin B12" And somehow I seem to remember reading years ago that if you ate foods like carrots freshly pulled from the ground and not scrubbed clean within an inch of their lives that you'd actually get some B12. I wonder if that's true. When a kid I do remember us going into the garden and eating carrots basically with just the dirt brushed off but no washing involved.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

In the UK the essential item for vegans is Marmite. There was great concern when production was moved to the Netherlands because of Brexit! I assume Vegemite works in the Antipodes. Dunno what the rest of you do ,,,

HeronNS profile image
HeronNS in reply to PMRpro

Ah, maybe that's my secret. I love Marmite and probably singlehandedly have kept our supermarket supplying it! They don't know what to do with it. For a long time it was kept with bakers yeast. 🤷

discoballs profile image
discoballs in reply to PMRpro

My daughter is in Australia and has Marmite with a lot of things! Liz and I even bought her a lovely pair of Marmite earrings from, the very wonderful, Etsy :)

Ruins67 profile image
Ruins67

I have posted before about B12. It’s a well-known fact and I know we are not Cats but the vets will quite often give B12 injection to a cat who is very lethargic and it’s a great pick me up. I’ve seen This happen with my own eyes. With that in mind, I took double dose of B12 at the start of the year after a bad dose of stomach flu. I was absolutely exhausted after it and could barely get out of bed each day. I found it really helped a lot with my energy levels. At present I’ve stabilised on 2MG for the last month to 6 weeks. My aim is to go down to 1MG once I seem fairly stable.

That means no afternoons when I’m tired and I need to sleep and no muscle soreness (or relatively little). The problem is as you’re getting older it’s sometimes difficult to decide what is general fatigue due to age and not be able to do as much as I could or what is caused by PMR. Personally it can’t hurt taking B12. It’s water soluble. You can’t OD on it. Any excess is excreted in the urine. Go for it and let us know how you feel after 2 to 3 weeks.

ValleysBoy profile image
ValleysBoy

I have suffered from B12 deficiency for years, before PMR. I have an B12 injection every 8 weeks. It has no appreciable effect on my PMR symptoms which I have noticed.

Susan1705 profile image
Susan1705 in reply to ValleysBoy

Thank you, very useful

sferios profile image
sferios

I have no idea whether it's related to my PMR, but I have a genetic Vitamin B12 deficiency. I have been taking under-the-tongue 5,000 mcg B12 lozenges for twenty years (I cannot absorb it if I swallow it.) My sister is the same as me.

papadapadoo profile image
papadapadoo

A post in one of my low-dose naltrexone groups testified that B12 was the key to eliminating peripheral neuropathy, which I get from time to time. So I took a lot of B12 and now the tingling in my ankle is gone. As always, we can't be sure why anything happened, but this has turned me into a believer in B12 for neuropathy (which may or may not be connected to my PMR or prednisone intake).

HeronNS profile image
HeronNS in reply to papadapadoo

If I tell my forgetful hubby this perhaps he'll make more effort to rememeber to take his Vitamin B12 supplement. He's constantly complaining about his peripheral neuropathy. Plus he spends nearly 100% of his time either sitting at his computer or sleeping. Yesterday there was a (false) fire alarm and I have never seen anyone move so slowly. Mind you most of the old crocks on our floor were moving slowly when we finally got out of our place. I'd have been outside many minutes earlier. Felt quite spry by comparison when I looked around me. But hubby seems incapable of moving at any speed whatsoever, even if his life depends on it.

papadapadoo profile image
papadapadoo in reply to HeronNS

Good luck! Ice packs stopped the tingling for a while, but the B12 seems to have put it into remission.

HeronNS profile image
HeronNS in reply to papadapadoo

Do you mind telling me how much you took and how long it was before you noticed an improvement? Hubby supposed to take one 1000 mcg tablet a day, but I looked at the dosette box I filled for him for our little trip away, and he probably only took it three times in nine days. 🙄 I've just given him a little lecture and reminder about how to take it (sublingual). He really has not been the same since his covid exactly a year ago. :(

papadapadoo profile image
papadapadoo in reply to HeronNS

A clear question with a fuzzy answer for you, HeronNS! I started taking a "mega B-vitamin tablet" (600 B-12) a month ago, but felt no results. Then I tried a product called Neurop Away, with just 240MG B-12 (times 2X/day) and other ingredients that are supposed to make it available. So I'd say: two weeks, and meanwhile the clay cold packs kept it under control at night. I'm sure sublingual is the way to go. Can you serve a pill after dessert???

HeronNS profile image
HeronNS in reply to papadapadoo

Thank you for your reply. That's interesting. 240x2 mg must be a lot more than 1000 mcg. Dr told hubby to keep on taking 1000 mcg per day, but I do know that even when he was being much more conscientious about taking the tablet he still complained of neuropathy symptoms, which are not painful usually. Do we dare increase the dosage without medical advice? And he did tell me this morning he always lets it dissolve in his mouth so he was doing that right. Also that his level when tested (some months ago I think) was all right.

Have just googled and recommended daily dose for healthy adults is only 2.4 mcg, generally available through food!

papadapadoo profile image
papadapadoo in reply to HeronNS

The Neuropa Away label says 240mg is 10,000X daily requirement--so it's honest. Seems safe; it worked for me previously and when I lost the neuropathy, I stopped it. That was 14 months ago.

HeronNS profile image
HeronNS in reply to papadapadoo

Thanks. I'll get hubby to ask doctor next time he has an appointment. Good to have this information. Really appreciate your help. :)

PMRpro profile image
PMRproAmbassador in reply to HeronNS

You'll have to use your Marmite stocks in cooking ...

HeronNS profile image
HeronNS in reply to PMRpro

It does add that umami flavour meat gives, makes some vegetarian dishes more palatable (like French onion soup without beef stock)! Hubby doesn't like Marmite. None of my kids do either, despite early and I thought rather clever, introduction to it.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

Not even in cooking? Do they eat meat?

HeronNS profile image
HeronNS in reply to PMRpro

Yes, although veggies are an important part of their diet everyone except me eats meat. I have added marmite to various dishes and no one is thewiser. Not that I cook for anyone else these days, just the two of us. My children all learned to become great foodies and cooks more or less out of self defence as at some point in their youth I realized I actually hated cooking. Efforts to entertain them since they have their own homes generally ended in failure so now we order out. Several excellent restaurants nearby which have been super for takeaway since pandemic, so that's one good thing to come out of the pandemic from my point of view. Thankfully they've maintained the takeaway option since reopening for indoor dining. It certainly seems easier here than it was in the Ontario town we've just been visiting.

PMRpro profile image
PMRproAmbassador in reply to HeronNS

It is a lunatic mixture when my girls arrive - one is vegan! The other eats vegan food quite happily and I like some vegan things but don't really like soy and a lot of things Nat uses I can't as they are wheat-based and while I'm on enough medication to suppress the itches, I know it isn't good for me. So often we are producing 3 meals in a tiny kitchen! Getting vegan food in restaurants here is not easy since most are very traditional - though there is one in town that always has one vegan dish and will adapt others and a brand new all-vegan training restaurant run by the local college but you have to book weeks in advance. Always safe at the pizzeria though and if I feel I should, they do good gluten-free pizza!

HeronNS profile image
HeronNS in reply to PMRpro

We humans certainly are a complicated bunch aren't we?! In my early vegetarian days I simply ate whatever everyone else was having, leaving out the meat. Things got an awfully lot more complicated after pred, and to this day I still avoid most wheat and have rather lost my taste for sweet goodies - a little goes a long way. I finished a Christmas chocolate bar just before we went away after Easter, and had even been, rather parsimoniously, sharing it.

lalar profile image
lalar

My rheumy added B12 on to my regular 3 month blood tests - good thing she did because I was always anemic but not since Pred and PMR I now have high levels of B 12 in my Liver. Water-soluble vitamins are easily dissolved in water, and unlike fat-soluble vitamins, are not generally stored in the body. Vitamin B-12 is the exception because it can be stored in your liver long term. I had to stop taking B's right away.

Susan1705 profile image
Susan1705 in reply to lalar

thank you, a good warning

piglette profile image
piglette

I think your friend may have been reading “fake news”!

Bella59 profile image
Bella59

Hi Susan,if you are on Methotrexate it can make you tired.I asked my gp to test b12 as i felt constantly tired.My thyroid was under active several months ago and i asked for levothyroxine dose to be put up.It helped some but i believe my vitamins were not as good because my thyroid tests were not picked up by gp as being borderline.I had to phone them and query results.My b12 was at the lower end of normal.I decided about six weeks ago to try vitB12 tabs.I take one a day, to early to see if they are helping yet.I get my bloods checked regular as i am on Methotrexate15mg pen and Filgotinib tabs for RA.I also am reducing now to 4.5 prednisolone for pmr.You will only know about b12 if your gp will test it for you.Hypothyroidism also causes extreme tiredness.

ColourBlu profile image
ColourBlu

I don't know if B12 helps with PMR but I did hear of a study that links non-alcoholic fatty liver disease with a treatment of B12 and folate together. Apparently it does not help with alcoholic fatty liver disease. I don't have the link to the study.

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