Hi I'm new here

[photography2019]

I was diagnosed in 2017 with PA my question is ; I feel exhausted all the time and can sleep for 14hrs some days do people with PA experience this, I have injection once every three months I have heard some people have them more frequent

thank you

[wedgewood]

Yes , many people on this forum have been forced totakenatters into their own hands, and self-inject in order to keep symptoms of P.A. at bay. You should perhaos in the first instance , try to get an injection every 2 months . This is now possible , due to new a new policy issued in February of this year . That may help you . I would go to see your GP , armed with this information . If you get no joy , then come back here . and we could tell you how to go about self- injecting . I assume that you are supplementing with folic acid , (say 400mcg)/as this is also an important vitamin (B9) which plays an important part with B12 .Best wishes .

[clivealive Forum Support]

Hi photography2019

These are the new guidelines for patients with neurological involvement mentioned by wedgewood

bnf.nice.org.uk/drug/hydrox...

I wish you well

[photography2019 in reply to clivealive]

This is interesting I have copied it thank you

[MariLiz]

I was certainly asleep for most of the time, and felt exhausted no matter how much sleep I was getting. Thankfully my GP listened to me, and I was able to get an increase in the frequency of my injections. This has made a wonderful difference in how I’m feeling, and means I can stay awake in the evenings now. I used to never see the end of films or TV programs because I would be sound asleep!

[photography2019]

Hi Mariliz

This is the way I feel its horrible as you say exhausted no matter how much sleep I get I have other problems as well unfortunately I have COPD, asthma, PA, and yesterday had results from blood test that I am low on Vit D and this could cause exhaustion as well so ive been well fed up having another blood test for Vit D Friday to double check, so I asked the question could I have more frequent dose of PA injection there answer was no as the nhs wont allow it no wonder so many are injecting themselves , I did say ok I will find a way like everyone else and do myself he said if I do that they wont be held responsible if anything goes wrong as a couple he apparently knows had gone down this route , I am seeing another doctor next week and my copd nurse and ask them about it and personally I don't think some doctors have a clue, frustration isn't the word,

[Cherylclaire Forum Support]

Seems your GP is not following latest advice and guidelines regarding treatment for B12 deficiency. Sleeping for 14 hours and waking up still exhausted is a very common symptom and life-altering. I was unable to work for 15 months because of this and other symptoms.

Despite my GPs best efforts, there seemed to be no frequency available on the NHS that would improve or even stabilise my condition long-term, so in the end, I self-injected every other day. I still do. While I am not yet able to work full-time, I am working 2 days per week, and sleep normally (8 or 9 hours) now without needing a mid-afternoon nap.

I am still hoping for more improvement.

My ferritin and folate levels were low-range and so I was put on a 3-month course of both initially, and these continue to be low-range despite diet unless I supplement. I get vitamin D on NHS because I was found to have osteoporosis of the spine.

Thankfully, not everyone needs the same amount of B12 to function. This is being proven scientifically by research initiated by the Pernicious Anaemia Society (PAS). It is also evident by the wide "normal" range established by laboratories for the B12 serum test.

Given a choice, no-one would opt for self-injecting and there may yet be someone at your practice who is more au fait with current guidelines. If you have a PA diagnosis, there is absolutely no reason that your GP cannot give you an injection every 8 weeks, and every reason, given your continued exhaustion, to do so: this would only be following medical guidelines. If he/she doesn't see fit to follow this advice, you are entitled to ask why. Let's hope the other GP is more supportive. You really don't need to have to fight for the correct treatment for your lifelong condition.

I would also recommend joining the PAS if you have not already done so, as they may well be able to help if you hit a brick wall with GP. Best of luck.