Loading injections finished but symptoms still here and getting worse

[Emma1996]

finished my loading injections 2 weeks ago and thought I'd at least see an improvement in my symptoms but they seem to be getting worse. The symptoms I had were mainly neurological, numbness, eye sight deterioration, losing concentration, amongst Others. These symptoms are getting worse especially my eyesight. Is it too early to be seeing an improvement and I'm just panicking or is it something to phone my gp about first thing on Monday?

[Emma1996]

Should also Have said that I've been told to wait 3 months before getting another injection.

[Gambit62 Administrator]

if you had neurological problems then you need to go back to the GP and point out that the correct protocol with neurological symptom per BCSH and NICE guidelines is:

loading shots 3x week until symptoms stop improving (review at 3 weeks)

maintenance shots every 2 months

You should however, note that B12 is used by a lot of processes in the body and symptoms can be caused by lack of B12 needed for more than one process. The effects on different processes will take different lengths of time to heal, eg effect on blood will take several months.

[clivealive Forum Support]

Firstly Emma1996 welcome on here.

Can you say a bit more about why you are getting the B12 injections - is for a B12 Deficiency or have you been diagnosed with P.A?

It is not uncommon for symptoms to appear to get worse before they get better and this is a sign that the B12 is starting to repair the damage done to your nervous system. Try not to worry overmuch - you are not alone in experiencing this.

As you are still having neurological symptoms you should be receiving more loading injections until there is no further improvement so quote this to your doctor - especially the highlighted bit:

Treatment of cobalamin deficiency

Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks.

The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement.

However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment

"

You also should make sure that your Folate level is "healthy" as this is essential to process the B12. Ask your doctor whether he has tested you and if so what was the result. If you haven't been tested ask for it to be done immediately.

The thee month interval between injections is normal for B12 Deficiency but that needs to be monitored by your doctor according to your symptoms.

Make a list of your symptoms and present them to your doctor and if possible take someone with you who can vouch for them, as your doctor is less likely to pooh pooh you in front of a witness.

If you have any more questions please come back on here. I am not a medically trained person but there are others on here who will be able t give you good advice.

I wish you well

[Emma1996 in reply to clivealive]

Hi. Thanks for the info. I have been diagnosed with pernicious anemia and was given 10 injections every 2nd day except at weekends as I waited 2 months between getting my blood results and starting treatment as my gp was never given my blood test results after my symptoms put me in hospital. The nurse giving me the injections tried to get me to stop them after 6 as "no one gets more than that usually" my gp disagreed and I got the rest. What's foliate? I've never been given anything else from my doctor.

[clivealive Forum Support in reply to Emma1996]

Folate (B9 or aka Folic acid) is another vitamin and it is essential to have a healthy level of this in order the process the B12 you are having injected.

Please ask your doctor to test your serum folate level and if necessary prescribe you with a supplement. Alternatively you can buy folic acid over the counter at your local chemist.

I personally take 1 – Folic Acid 400μg every day for more years now than I can remember but then I've been having B12 shots for 45 years.

[Emma1996 in reply to clivealive]

Yes I have been given those always have been a bit weary of taking them though as on the inside leaflet they advise for this not to be taken by people with pernicious anemia.

[clivealive Forum Support in reply to Emma1996]

Wow - that's a new one on me. What brand of folic acid were they?

[helvella in reply to Emma1996]

Isn't that because folic acid on its own (without sufficient B12) can mask low B12 by addressing the macrocytes - i.e. normalising red cell size - and thus leave people not diagnosed?

[miglet54]

I'm sure that you ought to ha e an injection every other day until YOU THE PATIENT STOP FEELING IMPROVEMENTS of your symptoms. Says she who hasn't seen the GP yet. Perhaps you ought to take the guidelines in for GP to look at.

[miglet54]

Are you taking foliate, I understand that b12 needs it to be properly absorbed?

[MaryWarnecke]

You might be best going down the self injecting route. That is what I had to do after I was "told" I was ok after the loading doses. I ended up injecting daily for over 2 years and at high doses for the neurological issues to subside. Now I am injecting once a month to see how I am, seems to be ok so far.

[fbirder]

Ask to see a neurologist. A B12 deficiency isn't the only possible cause of neurological symptoms.