B12 for low energy and depression while tapering - PMRGCAuk

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B12 for low energy and depression while tapering

arvine profile image
12 Replies

just wanting some opinions on B12 if helpful when feel so low, fatigue, etc little depressed , when tapering from 40 mgs since before Christmas, down to 15 mgs now last 5 days, hard to put one foot in front of other, lead like legs, and body, suppose to stay at this dose for 2 weeks, then go to 12 1/2, and continue tapering, is this feeling a result of adrenaline glands maybe, but like many, when chronic fatigue, and some pain for long time, results in low, depressed state, if anything like B12 supplement would help,

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arvine
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12 Replies
SnazzyD profile image
SnazzyD

Hello, fatigue is a difficult thing to work out so it’s usually educated (or not) guesswork. For sure your body had gone through immense change with the reductions. 15mg should be plenty so that your adrenal glands don’t need to work unless you only absorb about half of it.

B12 can pep you up if you are deficient so really you need a blood test for that. Also, if you are very low, the doctor can then look for why if necessary. If you are really deficient you will need a loading dose course and then maintenance injections because if you lack the factor in the stomach to absorb it, pills won’t work. It is better to try to get it from your diet if you just don’t take in enough rather than pills. This is clear information even if it is riddled with adverts.

webmd.com/diet/vitamin-b12-...

Another thing that can affect every part of you and make you feel flat as a pancake is vitamin D, especially at the end of winter. For some the average supplement dose is not enough so again it needs checking to see what level of supplementation you do need. If you are very low, you’ll need a few months of a loading dose.

arvine profile image
arvine in reply to SnazzyD

Thank you

pata63 profile image
pata63 in reply to SnazzyD

I went through critically low B12 deficiency in Dec 2009 and have been on monthly injections since. I had the loading dose, I remember getting called in as soon as the test results were in to have shots over 3 days. I was tested for intrinsic factor antibodies, but apparently the problem lies somewhere else in the chain of events which leads to being able to absorb B12 from your food. So yes a blood test including B12 might be a good idea. Since I developed PMR (mid 2018) I have had to juggle my approximately monthly B12 injection cycle to identiy what is fatigue associated with PMR. Fortunately I was trained to inject myself, so I have more experimental control over what is PMR fatigue, what is induced by tapering, and what is B12. It is thanks to the great people in this community that I feel I've finally got an understanding.

Daffodilia profile image
Daffodilia

I take B1 for mouth ulcers and sore tongue

whitefishbay profile image
whitefishbay

It might only be psychological but to get thru this winter I take daily vitamin with iron which keeps me going. Of course HU people keep me going too.

Zebedee44 profile image
Zebedee44

I use B12 patches rather than add another pill into the mix. I wear a patch for 24 hours every 5 days. Mainly to help with the angular cheilitis which I get in the corners of my mouth. Sadly I can’t say I’ve noticed feeling any less fatigued on the days I apply the patch but I am at the 7mg point and expecting some struggle going forwards. Best wishes on your taper, Chrissie

67Blue profile image
67Blue

As I have tingling mouth and tongue the rhumat. thought perhaps nerve damage so advised B1, after 3 months it hasn't altered that, but was happy to see on the front it said ENERGY, which I need in bucket loads, but have recently taken hopefully my last Steroid after just over 2 years, so now to sort out all the leftovers. As to what was PMR/GCA and what has just crept up on me.

PMR2011 profile image
PMR2011

Sorry you are suffering like this. If the pain is “aging” as the docs are telling you, does regulating med work? Somethimes I think they pull the aging card when they can’t figure it out. I really do wonder though if this is still your disease? I take daily Nicotinimide Riboside which is a form of B vitamin. We lose stores of it as we age. I find it has helped my energy levels and sharpened my brain. But you would need to investigate it for yourself. I also take 1,000u of D3 daily. Mind you, constant pain will drain energy no matter what supplements you take. Good luck, hope you find answers.

Viveka profile image
Viveka

I see you're well experienced with all this Arvine, but the thing that jumped out at me was how quick your taper was. From 40 before Christmas to 15 now. If the symptoms are not appearing, it may be that you are exhausted from the impact from reducing so quickly. Perhaps you need to stay where you are for a while and stabilise before next taper.

arvine profile image
arvine in reply to Viveka

yes, I think its a fast taper as well, but since the ultrasound for GCA showed negative( which was reason rheumy prescribed 40 mgs) my rheumy wants me to get down fairly quickly again, markers were coming down, and he had sent me for MRI on head, result showed subacute stroke, so now having catscan done on neck for arteries , check bloodflow, phew! anyway, I think my fatigue etc is also caused from fast taper, body can,t adjust that afast, thx for your input,

Ullswater profile image
Ullswater

Ive upped my vit d3 gradually over a few days to 5000iu from 400iu following advice from many contributors on this site. Maybe it's tempting fate to say, but i already feel different, I am walking better, less stop -start due to hot aching legs . I'm surprised and now wondering if its a psychological reaction to taking positive action! Oh me , of little faith after 4 years PMR , but whatever, its been uplifting.

PMRpro profile image
PMRproAmbassador in reply to Ullswater

Having more vit D around is likely to be a boost even if your stores are still low. Long may it last.

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