I am reading all the posts with interest and sorry to read of everyone's distress. I only just got my last injection as it was a Monday morning and they changed that morning but haven't advised tablets which would be great if they worked for PA. Next injection due in June so will have to wait and see what happens.
Take care
If you have P.A. tablets do not work .
Hi,
For anyone reading this thread whose B12 injections have been stopped/delayed or swapped for oral tablets.......or if you suspect they will be soon.
I copied most of the info below from a reply I left on another thread.
Have you considered joining PAS?
They should be able to pass on useful info.
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has members from other countries.
pernicious-anaemia-society....
There is a telephone helpline for PAS members to ring.
PAS support groups in UK
pernicious-anaemia-society....
Support meetings are cancelled during pandemic.
There are useful leaflets/articles that PAS members can access in library section on PAS website eg "Treatment is for Life"
pernicious-anaemia-society....
Concerns about Treatment
Have you also considered putting any concerns about treatment into a brief, polite letter to GP?
In UK, letters to GP are supposed to be filed with medical notes. Letters could contain symptoms, test results, personal and family medical history, extracts from UK B12 documents/articles, info from PAS etc.
Keep copies of any letters written. It is useful to have a paper trail in case there is a need to complain in the future.
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms.
Make sure your GP knows about any neurological symptoms you have.
CAB NHS Complaints
citizensadvice.org.uk/healt...
MPs
May be worth informing local MP of any difficulties in getting treatment and contacting AMs in Wales, MSPs in Scotland and MLAs in Northern Ireland.
People whose injections have been stopped/delayed may want to think about drawing GPs attention to the potential for permanent neurological damage if a person is under treated.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.
pernicious-anaemia-society.... See Page 2.
If people start to suffer deterioration in symptoms due to injections being stopped/delayed/swapped for oral tablets I think it is important to keep GP informed.
If I need to do this I will be writing brief letters informing GP of any increase in/return of symptoms.
Impact of Pandemic
Unfortunately this is an extremely hard time to argue for reinstatement of injections.
Many on forum have had B12 injection stopped/delayed or swapped for oral tablets during Covid crisis.
Many on this forum have been put in a situation where they have no alternative but to source their own supplies and self inject.
Injections stopped due to pandemic
Have a look at these two links which both have ideas on what to do if jabs cancelled because they are seen as non essential during pandemic.
From PAS website
pernicious-anaemia-society....
There are lots of comments under the posts as well.
From B12 Deficiency Info website
b12deficiency.info/blog/202...
Blog post below asks for people to leave comments if their injections have been stopped due to impact of pandemic.
b12deficiency.info/blog/202...
Most recent blog posts/news items about stopped injections
From 1st April
b12deficiency.info/blog/202...
PAS statement published 11th April
pernicious-anaemia-society....
Blog post about Covid crisis from B12 Deficiency Info from 18th April
b12deficiency.info/blog/202...
Blog post about e-mail campaign from B12 Deficiency Info from 19th April
b12deficiency.info/blog/202...
BSH guidance
If you're in UK, be aware that the British Society of Haematology (BSH) has issued advice about B12 treatment for doctors to use during pandemic.
PAS news item about BSH advice published 25th April
pernicious-anaemia-society....
Latest version of the BSH advice for GPs etc during pandemic.
Be warned that your GP may not know that BSH have revised their advice within last few days and they may be using an earlier version.
b-s-h.org.uk/about-us/news/...
Click on General Haematology tab in link above
then
Click on BSH Advice on Supplements tab
I think long term that some UK forum members will struggle to get their jabs reinstated after pandemic has ended.
There are moves afoot in some areas of UK to make a permanent change to oral tablets.
See link to another forum thread below about treatment in Gloucestershire.
healthunlocked.com/pasoc/po...
Alternative B12 treatment
Some people get injections from private GPs and some find that high strength oral b12 eg tablets, sub lingual lozenges, sprays, drops help a bit. I think most people on here find that injections are more effective than other methods. Some on forum source their own supplies and self inject.
At the moment, GP surgeries may argue that these are exceptional times and they cannot offer injections at the surgery. Some on forum have asked their GP surgery if they can be taught to self inject.
WHO (World Health Organisation) classifies B12 as an essential medicine so in my mind, people should not be denied treatment.
B12 article from Mayo Clinic
ncbi.nlm.nih.gov/pmc/articl...
Suggests
1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections
2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable
3) Successful treatment should not be stopped
Symptoms Diary
I think it's worth keeping a daily symptoms diary which tracks changes in symptoms over time and when any treatment is given. It could be useful evidence of deterioration ( or improvement) in symptoms that could be shown/copied to GP if necessary.
I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, info about PA tests, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.
healthunlocked.com/pasoc/po...
I am not medically trained.
Bittersweet Bonds - Pernicious Anemia and the Doctor-Patient Dance
seeing neurologist, advice on b12 injections welcomed…
