PA, can it just go away ?

[NigelG66]

Hi, I’ve been having B12 injections every 3 months for the last 14 years, however, just changed to a new medical practice and they tell me I no longer need it, my blood results are normal for B12 and folate, originally I was told PA was for life, anyone any idea how I can magically be “cured” ?

[Penni]

No PA will not go away. I was told the same thing and my injections were stopped for 3 years and became so ill that I almost died. 6 years on I still suffer with issues caused from my injections being stopped.

[Nackapan in reply to Penni]

How awful.

[Penni in reply to Nackapan]

It was but now I'm in a fairly good place. I still have days where I can't seem to have enough energy to do much, over all a vast improvement on where I was

[Nackapan in reply to Penni]

Glad to hear it . What regime are you on for maintenance?

[Penni in reply to Nackapan]

I take 5mg of Folic acid daily and SI every 6-8 weeks. My GP is happy for me to do this and provided my b12 on prescription

[Kate71 in reply to Penni]

I had my b12 injections stopped in February this year, and was told I could not get them for a year. Involved MPs, emailed doctor no success. So I have gone private, this is in Scotland, had first one today. Cost £39 wish I had thought of doing this before.

[Jillymo]

Sad when the cost of the injections come before our health. I have recently been diagnosed and had to fight tooth and nail to get a loading dose due to being so ill I was given it - supposed now to be every three months but not holding my breath.

[Nackapan in reply to Jillymo]

Keep pushing for your treatment . You may need to continue more frequently had loading doses . Then a 5 week break as supposed to wait 3 months still very Ill bedbound. With a fight every other day continued it was only after another month of thises I finally saw some improvement.

[Jillymo in reply to Nackapan]

How long before you felt better ? I have got to wait 3 mnths before another shot is given. My goodness it sure makes you very poorly when low I could barely walk I were so weak.

I hope your making some progress now.

[Nackapan in reply to Jillymo]

That was Nov. 2018. I was bedbound . Daily migraines that would after days go to chronic tension headaches. I coukdnr walk in a straight line pressure in my head vision down ect ect. So come a long way from there.

I'm now walking fine . Still get headaches but much less often and of the tension sort. Tinnitus greatly improved. Fatigue a big problem . If I try and push through which is my nature sometimes I can get through and do a few things other times headaches and weakness . What may work one day not the next. I seem to literally shut down at times to the point I csnt digest so I'm ul early and last meal by 5pm.

Light and noise sensitivity still a problem but not as severe.

Still waiting for a symptom free day. And long to ride my bike or watch some tv or read a book.

But I'm hopeful for more improvements just seems very slow.

[Kate71 in reply to Nackapan]

Sorry to hear of how bad you feel, I have all the symptoms you have. Now getting injection in my eye as water pressure behind it. Monthly. Never had any problem before injections were stopped. Read somewhere stress can cause this. Hope you get a lot more better days, take care.

[Nackapan in reply to Kate71]

Thank you. You too.

[Sleepybunny in reply to Jillymo]

Hi,

If you have neuro symptoms and you're in UK, my understanding is that injections should be every 2 months.

The BNF which gives guidance on treatment in UK indicates that even if patient does not have neuro symptoms , injections can be every 2 months.

BNF

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

BNF guidance on treating b12 deficiency changed last year.

pernicious-anaemia-society....

Were you given the recommended amount of loading doses when treatment started?

It's 6 loading injections over 2 weeks in UK if no neuro symptoms are present.

It's a loading injection every other day for as long as symptoms continue to get better if neuro symptoms are present.

These every other day loading injections can continue for weeks even months. IF improvement continues so should every other day jabs.

If you weren't given recommended pattern of loading injections, you might be able to persuade GP to restart loading injections.

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

NICE CKS

cks.nice.org.uk/anaemia-b12...

Have you considered writing a letter to GP?

Link about letter to GP if under treated for B12 deficiency with neuro symptoms.

b12deficiency.info/b12-writ...

Has your GP got a list of every symptom you have including every neuro symptom?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

Peripheral Neuropathy

nhs.uk/conditions/periphera...

GPs often look for symptoms of peripheral neuropathy in relation to B12 deficiency so worth mentioning any symptoms suggestive of PN in any letter or conversation.

Symptoms Diary

Might be worth keeping a daily symptoms diary that tracks changes in symptoms over time and if and when treatment received. This could show when symptoms start to return after an injection and if any new symptoms appear. It could also be evidence of deterioration or improvement in symptoms to show to GP/specialists.

[Jillymo in reply to Sleepybunny]

Thanks for all the info for me symptoms are a big problem what with so many ailments it is hard to know what illness is the causing what symptom. I will see how I go before approaching the Gp at present she seems keen to help me.

We also have to remember it is not always down to the Dr's to make the final decision they are instructed to stop our medication at times due to cost. I am making note of all the links and reading for future reference should I need it. Take care. 😘💐

P.s Have you been screened for autoimmune illnesses ? I have Antiphospholipid Syndrome so sat here waiting for a nurse to do my bloods. I dont like taking up space on some one else's post.

[Penni in reply to Jillymo]

It can take upto a year to get your levels stable. You will get there it does take time as there is no quick fix with PA.

[Jillymo in reply to Penni]

Oh great you have really cheered me up - a year of feeling like this ! 😱 Is there anything I can do that will help ? I hope you are stable now it's not nice feeling so poorly and weak. 💐😷

[Penni in reply to Jillymo]

I am stable now thank you. Everyone is different and reacts differently to treatment. Hopefully it won't take that long before you start seeing an improvement

[Kate71 in reply to Jillymo]

Someone was saying to me they cost 69p, I was thinking they do flu jabs clinics, they could do the same for b12, but so happy I got injection. Nurse in private hospital thought it was awful stopping injections.

P

[Jillymo]

We would all like to be cured of this curse but as Nackapan said keep pushing I know it's hard to have to fight when your so unwell.

Good luck

[wedgewood]

You must get your B12 injections reinstated . Pernicious Anaemia patients need b12 injections FOR LIFE. Write a letter to your GP and the practice manager ,telling them that your injections must be reinstated IMMEDIATELY .Keep,a copy . These letters will go on file . If you are a member of P.A. , they can help you get the injections reinststed . Your doctor is incompetent ( putting it politely ) Let us know how you get on please .

[Sleepybunny]

Hi,

PA should be treated for life.

Have you thought about joining and ringing PAS who can offer support and pass on useful info?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

PAS website has a leaflet/article "Treatment is for Life" which if you join PAS you could print out for your GP.

pernicious-anaemia-society....

Unhappy with Treatment (UK info)?

I suggest putting queries about treatment into a letter to GP and consider copying it to practice manager.

In UK my understanding is that letters to GP are supposed to be filed with medical notes so hopefully less likely to be ignored.

Letters could contain symptoms, test results, dates of diagnoses, family and personal medical history, extracts from UK B12 documents etc. In short, evidence that backs up your request.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

MPs and devolved representatives in Wales, Scotland, NI may be worth talking to if struggling to get recommended level of treatment.

I left a reply on this other forum thread by a person in a similar situation to you so probably worth a read.

healthunlocked.com/pasoc/po...

I am not medically trained.

[Jillymo in reply to Sleepybunny]

Bless you and Thank You. 😘💐

[Gambit62 Administrator]

PA does not just go away - it is an autoimmune gastritis that attacks the mechanism that allows people to absorb most of their B12 from diet - it does not reverse. You are being treated to prevent a B12 deficiency recurring by having regular injections. If these are taken away you will become B12 deficient over time.

Interpreting a serum B12 test post injections is extremely difficult as injections put an enormous amount of B12 in your blood and then it slowly falls over time. How quickly it falls varies from person to person and some of the early studies with injections show that whilst the average for hydroxocobolamin is 2 months and for cyanocobalamin is 1 month in some patients it took over 4 years. Raising serum B12 levels with injections is an extraordinary measure and does seem to result in patients, on average needing much higher levels of B12 post injections - so using serum B12 levels to manage how frequently you receive B12 shots or conclude that you don't need any more B12 because your levels are in the normal range is at best bad logic.

Suggest you write to your GP - copy to practice manager pointing out that the BCSH standards (British Council for standards in Haematology) as well as NICE guidance - states that further testing after after loading shots isn't necessary and treatment for absorption problems like PA is for life.

The BCSH standards as they were last published can be found here

onlinelibrary.wiley.com/doi...

[Jillymo in reply to Gambit62]

Thank you for the info which is interesting because I am diagnosed with non-erosive gastritis ! I am also diagnosed with Lupus / Sjogrens and Antiphospholipid Syndrome all autoimmune diseases.

Would the gastritis affect absorption of other vitamins also ? I ask because my ferritin was also low - inflammation levels are raised both CRP and ESR.

Thank you so much for the information I am taking all on board but early days for me as yet as I had my last loading dose on Friday.

I am going to read all the links sent by yourself and Sleepybunny. 😘💐

[Gambit62 Administrator in reply to Jillymo]

absorption problems can affect other micronutrients - for PA the most commonly affected are folate and iron

[Jillymo]

I recently changed my surgery the previous were hopeless. I now have a good Gp who is trying to help me as I have other complications going on. Glad to hear your not so miserable I was feeling as if life was not worth living but here we are telling the tale and helping others. Be gentle on yourself and try and keep positive as hard as it is at times to do so - especially when at rock bottom.

Best wishes. 😘💐 ☕🍫

[LauraJane2 in reply to Jillymo]

It took me a year to get back to “normal” but I improved gradually over that year so it wasn’t that bad and once you feel an improvement it really gives you a boost.

[Jillymo]

Nigel sadly it seems there is no magical cure - if only I had a wand. 🙏

Be insistent or change your surgery that's what I did. I now have a Dr who at present seem's to be bating my corner. Take a look at the link Gambit62 put on albeit heavy reading there was an interesting bit about negative results you might find of interest and present to your Gp.

Good luck.

[Photoali66]

Hi NigelG66

No it doesn't go away at all. It's a life long condition. However, I'm in the same situation as you. I was diagnosed 15 years ago by my now retired Gp. I had up until last year been on monthly injections. Sadly a practice partner took it upon herself to stop my injections. Her reason? She cant find the original diagnosis anywhere on my notes and yet every referral letter to the various consultants I see, mention my PA so it is in black and white.

My folate and b12 are dropping quite rapidly, especially folate. Unfortunately she ordered me to have a IF and Parietal cell test. You guessed it, they have miraculously come back negative. So no more treatment for me. I'm feeling worse now than I ever did and that was dire.

It's a terrible situation for so many of us. I wish you all the very best and hope you manage to get your injections reinstated.

Best wishes.

[Nackapan in reply to Photoali66]

They should know those tests are not reliable . They should know once on injections tour body needs a higher amount of b12 in your system to function. The7 should know to go by your medical history and symptoms .Do 5hey really think we go because we love painful injections??

I find all this so alarming .

Do write a formal complaint about not following bnf guidelines . Also list tour neurological and other symptoms returning. Ask PAS for advice if you s member.

[Photoali66 in reply to Nackapan]

Thank you. X

[Sleepybunny in reply to Photoali66]

Hi Photoali66,

Might be worth starting your own thread on the forum if you have time.

[Photoali66 in reply to Sleepybunny]

Yes, sorry. I realised I'd mentioned too much. I don't post often on here but wanted to let the original poster that they weren't alone in their dreadful treatment. Apologies.

[Sleepybunny in reply to Photoali66]

Hi,

I think that's really thoughtful to let someone know they are not on their own.

I thought if you started your own thread then you might be able to get some support for yourself as your injections have been stopped.

[Photoali66 in reply to Sleepybunny]

Thank you.

I'm quite unwell at the moment but I'll certainly keep it in my mind with regards to starting my own thread.

Wishing you a lovely day and thanks again for your kind message.

Xx

[LauraJane2]

If my injections get taken away I will self inject. It isn’t worth the risk of getting ill again for me, especially as some symptoms take so long to recover from/may not be reversible.

[Jillymo]

Nigel - I have fallen in love with your cat, what a little beauty. 😺💕

I have been looking all morning for my magic wand in the hope I can cure you but no luck with that one but if I can put a smile on your face - then laughter is a good healer. I do hope you feel better soon.