Do symptoms improve the longer you are treated?

[Clare184]

Hi

I have looked through quite a few posts about how quickly symptoms should improve and understand this varies drastically. What i am wondering is whether the gap between injections can ever be reduced so does you're body improve the longer treatment is received?

I finished my 2 weeks of loading doses on November 11th and am just noticing some symptoms creeping back in particular some tiredness a few days ago, really itchy skin tonight, more short tempered and awake at silly o'clock. My next jab isnt due until February which seems an eternity away so would love to know if the symptoms will stay longer each time i have an injection?

Also my folate was low but havent been told to supplement so wondering if i would have been feeling better for longer if i had? Still feelinh better than before but starting to slip back which is scary

[Gambit62 Administrator]

I've not come across anyone reporting that relief from symptoms lasted longer as treatment went on - more that it might take a while to start noticing a difference from the shots. Stongly suspect that c 1 month is the frequency with which you personally need treatment. There doesn't really appear to be any supporting scientific evidence for 3 monthly maintenance shots and it was originally monthly when hydroxocobolamin was introduced.

[Clare184 in reply to Gambit62]

Thanks Gambit interesting to hear monthly used to be the timeframe. Not sure whether to give it some time before going bavk to my gp maybe see how long it helps for in feb but not due a review with gp until May. Feeling some pain in my wrists this morning too

[pvanderaa]

With the initial 3 month period between hydroxocobalamin injections, life was like a roller coaster ride with symptoms from the high after each jab and symptoms from the low when the B12 ran out before the next injection.

As I got the GPs to give me more frequent injections, the roller coaster ride leveled out and now on weekly cyanocobalamin injection that I take 1/2 ml twice a week, life is pretty stable and consistent.

[Clare184 in reply to pvanderaa]

Glad to hear you've found the right frequency to be stable. It's reassuring to know it is possible. I am still very new to all this and naively hoped the injections would be like a 3 monthly magic wand lol good to hear another story of gps listening and adjusting treatment too!

[pvanderaa in reply to Clare184]

Nerve damage takes a long time to heal. It is thought that repair of the myelin sheath is possible but if the axon is damaged the nerve is gone.

[clivealive Forum Support]

Hi Clare184 if your Folate is low I think you need to "bump it up" as it is essential to process the B12.

[Clare184]

Thanks Clive think I'll try and speak to the docs and see if they will give me a b12 top up while trying to boost my folate too it was only 3.4 last time i was tested