Withdrawal

[Katys1981zzz]

For the last year I have had a b12 shot every week. For unforeseen Circumstances I haven't been able to have any for over a month now. Feel like all my symptoms are coming back. Anyone else had this?

[clivealive Forum Support]

Hi Katys1981zzz that is not at all uncommon.

I've had P.A. for 45 years and been on monthly injections of cyamocobamalin since 1972 yet feel the return of some symptoms in the run up to the next injection. Fortunately I've been able to persuade my doctor to increase the frequency to every three weeks now. It seems as if you need to get back onto your weekly shots if possible.

Do you know what your Folate level is?

I am not a medically trained person but there are others on here who will be able to give you good advice.

[Katys1981zzz in reply to clivealive]

Thanks Clivealive

I self inject and have managed to order some now but no idea how long it will take to get here. My 2 monthly at the docs is due on Wednesday so at least I know I have that one coming.

Haven't felt this bad for so long, my muscles are tender, I'm waking at 3am ravenous and have awful headaches.

I'm not sure about my folate. Normally take a pill with every injection but haven't since I ran out of b12.

That was good of your docs to move yours to 3 weeks for you.

[Galixie]

Yes, if I don't get have my injection every week I also get a return of symptoms. Hopefully, someday, science will be able to explain why some of us need more frequent injections than others.

Withdrawal is not really the correct word to use. Relapse of symptoms would be more accurate. Personally, I use the word crashing to describe the return of symptoms, because that is what it feels like to me. When you are getting the proper treatment and your symptoms go away, you are in remission of symptoms. Withdrawal refers to a chemical dependency. Since B12 is not an addictive substance, it does not produce withdrawal symptoms. It is a vitamin that is vital for sustaining life though, so running out of it naturally makes you ill.

[Cherylclaire Forum Support]

Yes, Katys1981zzz - I agree with Galixie about terminology: especially since a haematologist told me recently that B12 is "highly addictive" !!

For the last few months, I have been having 1 injection a month and seeing a pattern forming: I noticed that at 16 days, the spots return and I get that creepy, draining ants-under-your-skin feeling and know that's it all gone completely. People say it's like ants: I think of it like tiny iron filings- remember at school with the magnet and they all started moving slowly trickling towards it, flipping over as they went ? Perhaps you're not old enough, Katy (1981 ??)- so okay, ants then ! Recognise that as a feeling ? Not everyone gets it I know.

Never yet entirely been "in remission"- looking forward to that day !

[Katys1981zzz in reply to Cherylclaire]

Thanks Galixie and CherylClaire.

You're right about the terminology.

I have my supplies now so hopefully will see an improvement over the next few weeks.

Hope you're both having a. I've symptom free day

[Cherylclaire Forum Support]

Today's not been bad at all.

1/2 hr walk this morning (because of osteoporosis in spine) to get to physio for 1 hr (for shoulder fracture and torn rotator cuff) and then walked home again. I should be fit as a fiddle, but I left out the part where I sat in the sunshine at an outside table at the café in the park and devoured a full veggie breakfast ! Still, 2 eggs: plenty of B12 !

Glad your provisions arrived, Katys1981zzz