Crumbs - I actually feel worse now I have started the B12 jabs.

[stillwaiting]

I think it must be a flare coinciding with starting the jabs - but I feel absolutely exhausted and in a lot of pain. I cried in the car on the way to my jab this morning - pathetic or what? - my very own pity party - lol.

How long before they kicked in for you?

Lynn.x.

[Hidden]

Hey Lynn..Nice to meet you..What kind of flare do you mean?

I have RA and I have a b12 deficiency..for me, it took almost 5

months to get up to par..then I quit worrying about it and suddenly

the numbers fell back down again..What are you taking for medicines?

Crying is actually healing..don't worry about that ..being low on B12 can

make you feel like you are pulling a sizable train behind you..I feel for you,

I have been there at least 2-3 times while monking with my levels..I bought

my own B12 shots from the canadian pharmacy..I think that I shouldn't have

done that..my other vitamins went out of whack..I didn't feel better but the B12

gave me such a surge in energy that I was absolutely giddy..for me it was

being happy drunk.. it lasted for several days..you could do sub lingual sprays

or disks that dissolve very very slowly under the tongue..you have a great big

ugly looking artery that is right under the tongue..it will be absorbed quite nicely

and slowly but that takes some practice to make it last 35-40 mins.

Good luck.. Karen

[stillwaiting]

Hi Karen - the flare up I think is either cos I have Hughes Syndrome but I am also weakly positive for lupus - both of which seem to come in "flare ups" when the symptoms become more obvious.

I like your train analogy - cos that's just how I have been feeling lately.

I take warfarin for the Hughes Syndrome and will soon start plaquenil for the lupus symptoms. I take lansoprazole for an inflamed stomach lining and am on steroids for my asthma - which is also playing up at the moment.

Thanks for the B12 info.

It is 8pm here and I am already ready for my bed!

Thanks for replying - I really appreciate it.

L.x.

[Hidden]

You really got hit up with some nasty diseases...hugs to you..

Thank goodness that we are in the new age of better drugs..

With that Hughes syndrome and for me not knowing what it's all

about, I would hate to tell you what to do and then have something

go very wrong...I feel like we should all pull back on this one because from

my quick look up, you may have some unique symptoms if anything is

changed in your blood..the other thing that I do worry about is that you would

self treat and have it interfere with your medicine...Warfin is some touchy

medicine and I am sure that you have to go in for very frequent blood tests..

or at least I hope so...

I can offer you sympathy...Steroids is the necessary evil that I endure as well..

I get kenalog shots..that's something that sets me off, I get wired higher than

a kite for several days..but it takes down inflammation fast and fiercely...

Are you diagnosed with an actual ulcer? That would be my first worry..please

disregard what I told you before I knew that you had this other thing...

As much as you are tempted, getting the okay from the doctor is your only good

option...anything else could really cost you in the end..so be right on, do what

the doctor says and keep smiling..

I am 6 hours behind you..I am working at the same time -dual computers..haha.

Have a good rest and take care of yourself. =) xx Karen

[stillwaiting in reply to Hidden]

Thanks Karen - don't worry I pass everything by the doctor!! (Too scared not to -lol!!) I don't have an actual ulcer. Warfarin is a horrible drug yet I feel much better on it - but whenever you take another medicine you have to have extra blood tests so see how it has reacted with the warfarin. So tomorrow I shall find out if it has lowered my INR which might explain how awful I feel. When the INR goes too high I can't sit still and all the housework gets done - lol - this is great but high INR is potentially dangerous. I guessed you'd be about 7 hours behind us - so not a bad guess.

Thanks for replying

L.x.

[Hidden]

Hi Lynn,

Unfortunately it is common to feel worse before you feel better. This is sometimes called start-up symptoms. There's a link about this here:

b12d.org/b12-injections-wha...

Keeping a symptom diary is a good idea as it suggests, so you can see that actually some things are improving, and also gives you something to discuss with your doctor if you need to. The other suggestion I have is to make sure you have good levels of folate and iron (they may need supplementing if low), take a good B-complex, eat lots of potassium rich foods, maybe some Epsom Salt baths for magnesium. Most of all you need to rest and give your body a chance to do some healing.

H x

[stillwaiting in reply to Hidden]

Have just read your link - thank you so so much - it was like reading me - LOL! I am in a lot of pain, pins and needles and nerves twitching in my face - I guess from the article it is all waking back up again! I felt so guilty because I rested yesterday afternoon and this morning and now I don't feel so bad. I go to bed very early at night but I can now see that I do not rest at all during the day usually-hence why I just drag myself through til bedtime! My folate and iron are supposed to be good. Thanks for the other diet advice Will check with pharmacist what I can take seeing as I am on warfarin.

Thanks again Hampster - you're a gem.

L.x.

[Hidden in reply to stillwaiting]

Just get a copy of those folate and ferritin results if you can - I was told my folate was "fine" when it was below range and I was in fact deficient

I'm still repeatedly told my ferritin is "fine" at 31, with the bottom of the range 15 and the top in the 100s. There is some research that shows people with ferritin lower than 50 can be symptomatic and benefit from an iron supplement (can't find it right now).

Here is another link about folate and ferritin during B12 treatment:

b12deficiency.info/assets/p...

One must be always one step ahead of medical ignorance I'm afraid.

Take care, H x

[Erainy]

I'd say, stay with it. It is likely that it's a sign that you are healing. For example, some people would come up with many spots even though they were not spotty before. This is because the body is suddenly able to get rid of toxins which could not get rid of before without B12 in the body. Also, pins and needles....sign that your nerves are waking up! I've had both of the above. This is what I've been told by Dr Chandy. If you are still worried, perhaps consider contacting him at B12d.org to put your mind at rest.

[stillwaiting in reply to Erainy]

Thank you - I think you are right - this afternoon I did feel a glimmer of hope - a bit more energy

L.x.