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[Kelly1010]

Hi I was diagnosed with pernicious anemia nearly 2 years ago. I get my injection every 12 weeks and take a folate tablet every day. Always around the week 10 mark my energy levels drop off a cliff and I pick up every little bug going around. I just started a new job in november doing around 20 hours more than I did in my previous job I'm really struggling with work just now as I'm due my next injection at the end of the month and the employers having an understanding when I pick up a bug and take a few days off like I have had to do just now with a stomach bug. Is pernicious anemia classed as a disability if the worse comes to the worse and I get paid off.

[wedgewood]

For many Pernicious Anaemia patients , one injection every 3 months is not sufficient to keep symptoms at bay . I’ve been a member here for 4 years , and I hear of P.A, patients who need Injections at enormously varying intervals . The medical profession in general do not accept this . I read that some patients need daily injections . I need weekly injections . The medical profession in general has little understanding or knowledge of P.A. unfortunately , which means that many of us have to self-inject to keep symptoms at bay .

The guide lines for treatment changed last year , so you should be able to get your injections every 2 months now . If you look through the “Pinned Posts “ on the right hand side , you should be able to find the reference and show your G.P., as he probably doesn’t know about it . It sounds to me as if a two monthly injection is what you need . You may hear from someone who can give you the exact reference to the new guide-lines that you need .

Some G.Ps will not follow the guide-lines . In that case you will need to self -inject which is cheap and easy .. if you need to , come back here and you will get the information that you need .. B12 injection ampoules can only be obtained on prescription in the U.K. . We can obtain them from reliable German online pharmacies. But do try to get the extra injection from your G.P. first .

.Im afraid that P.A. is not recognised as a disability . Our chairman , Martyn Hooper , often has to represent members at employment tribunals ,to plead their case . This happens when patients have not had treatment soon enough so that some symptoms cannot be reversed , leaving patients unable to work . This happened to Martyn himself who had to retire early . because of irreversible symptoms .

This is not the case with you . You need 2 monthly injections and you should be able to get them under the new guide lines , Best wishes . to you .

[Kelly1010 in reply to wedgewood]

Thank you, I was only diagnosed after nearly dying levels were so bad I ended up with neutropenic sepsis and this is when they found out. Been quite scared recently as been waking up with intense pins and needles or no feeling in arms or legs at all. During the day I can also get this so not sure what's happening.

[wedgewood in reply to Kelly1010]

Yes , you see what I mean . It took so long for you to be diagnosed . That’s terrible . It happens all the time , often with tragic results . First of all persevere with your doctor to get 2 monthly injections . You should get those., if he/she follows the guide lines ,The trouble is that many GPs do not follow the guide -lines . If this is the case for you , do start self-injecting .It’s your health that is at stake , Do not delay . You have neurological symptoms , so you really need loading doses again ( 6 injections over 2 weeks and then 2 monthly) . It’s very difficult to assert yourself when you don’t feel well . If it’s possible , take someone along to your appointment . You are less likely to be labelled as a hypochondriac then , when there is a witness . I’m sorry that you are feeling so unwell . Do your best to get the treatment you need . Very best wishes .

[Litatamon in reply to Kelly1010]

I am very sorry Kelly. Happy though that your issue was found.

And I see you have an apprehension with needles and self-injection. That is too bad because it is very freeing to self-inject.

Hope you get the frequency that you need soon.

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I was taken aback by your mention of sepsis being linked to b12. I have had sepsis twice and it was always "we don't know why your body isn't fighting this" and a barrage of tests for the source. Always negative on this, negative on that.

I am going to go and collect my blood work from both hospital stays and see if either ever tested b12 or vitamin d. I doubt it.

Any information, or linking any easy read, on the connection would help me as I am still being scanned for safety.

I would like to have a more extensive conversation at my next appointment and scan but want to be prepared.

Thank you.

[Bellabab in reply to wedgewood]

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

[Ryaan]

The same guidelines say that treatment for patients with neurological symptoms (which you have) is one injection every other day until no further improvement and then now it’s one injection every 8 weeks instead of what use to be every 12 weeks.

I hope someone here can give you the link to the new guidelines.

You can print them out and show your doctor that it’s changed.

I would write down what symptoms you have to show the doctor.

Sorry I don’t have the link to the new guidelines but I’m sure someone will give you the link soon when they read your post.

Try with the doctor first before thinking of self injecting although it’s cheap and easy to do.

[Kelly1010 in reply to Ryaan]

Thanks for all the advice last thing I want is to self inject as i have a fear of needles so hope it never comes to this. Going to join up on here soon and see if any support groups are close by.

[CW12 in reply to Kelly1010]

Sounds like you are not getting enough.i was not either. I am doing better at once a week but unfortunately I self inject... never thought I would be capable