Hello everyone and thank you for allowing me to join today and help me in my journey being newly diagnosed with pernicious anemia

[Loveslife123]

Are the injections painful ?

How long till I feel better?

Thanks

Loveslife123

[wedgewood]

Welcome to PAS forum . You have come to the right place Loveslife123 . You will always find help here . My B12 injections are not painful in the slightest . Perhaps because i self -inject . My allotted B12 injections were once every months , and my symptoms stated returning long before that . My doctor

woukd not allow me more regular injections , so luckily i found this forum and how to obtain B12 ampoules from German online pharmacies . So now I self inject weekly to keep well . Many of us on here self-inject Some as often as daily . A 25G x 1 inch needle is fine for I.M injections. A 30G x 1/2 inch for subcutaneous . B12 is a watery injection and passes easily through a fine needle .

It is really impossible to say how long it will take for you to feel better . It does depend how long you have been deficient . I have to say that after 5 loading injections .I felt very well , but declined quite fast afterwards .

Pernicious Anaemia is an autoimmune condition. These conditions rarely come alone . ( there are certainty 100 such conditions.I have rheumatoid arthritis as a “companion “. )

There are many symptoms with P.A. If they are of long standing they can become irreversible.

Most doctors have poor understanding of P.A . About 50% of P.A.patients test negative to the IFAB test ( Intrinsic Factor antibodies test ) So it cannot be relied upon . But many doctors don’t realise this .

You can find out. lot about P.A. by reading books that our founder and Chairman, Martyn Hooper has written ( Amazon smile , and choose P,A. as your charity)

So once again welcome . You know where to come if you have questions . Very best wishes .

[Vk7GOD in reply to wedgewood]

Well said. I cannot add anything more

[Nackapan]

Hopefully you had an early diagnosis.

I was rather a zombie in my loading doses and can't remember much about it

Sometimes they are painful. Depends who is doing them and how relaxed you are able to make your arm.

Compared to my symptoms they really weren't s problem.

I too explained away my symptoms to the menopauseax did my Gp untill they got so severe.

You haven't mentioned symptoms but hope you start improvements very soon.

[LadyBothwell]

Welcome to the forum, the people on here are a great help. I was diagnosed with PA 17 years ago and like many I have another auto immune disease, in my case recurring iron deficiency anaemia. For me injections are rarely painful but every now and again one stings or bleeds or my muscle aches for a while, things that help me are that the ampule is body temperature, I’m not dehydrated and I relax my arm (easier said than done when some grumpy nurse who hurt before is about to stab you with a needle) . How long does it take is a how long is a piece of string question! Everyone is different. For me some symptoms went within 6 to 12 months, others didn’t go until (after many battles with the health care professionals) I got more regular injections from my gp which I now supplement with self injections.

Two things that helped me. Firstly, I made a chart of symptoms and treatment, what other factors affected me (stress and heat seem to increase my need for b12, also during peri menopause my need went up) and what other supplements helped especially folate and some diet changes. This helped keep me a little less anxious and track progress especially helpful when brain fog sets in. Over time I started to see a pattern and it helped me get proper treatment

And secondly accepting that this is a condition for life, it’s completely possible to live well with it but you should be kind to yourself on days that don’t go so well and demand kindness and respect from others including GPs who can be dismissive of the very real consequences of some of the symptoms, physically, emotionally and mentally.

Also Join the Pernicious anaemia society, The research they are doing is invaluable, read Martyn Hooper’s book and stay away from crazy b12 deficiency Facebook pages that give misleading information!

[pitney]

WelcomeAs others have said pain with injection can vary from person to person I self inject and only occasionally get pain and its normally if I am trying to do it to fast but from what I have read on here this has also happened to people sometimes being injected by their nurse at the surgery. I find I am fine if i take my time and also slightly warm the B12 ampule in my pocket just before i use it.

As for feeling better again that is different from person to person I found that I have to pace myself and take note of what my body is telling me , do what I can when I can ,watch what I eat (going glutton free has helped me) and keeping a symptom diary can be of help when trying to work out if you are improving . Again some find symptoms lessen quite quickly while others still get symptoms with frequent injections

I wish you all best wishes and good health

.

[wedgewood in reply to pitney]

I loved your “glutton free” Freudian slip “ pitney !

[pitney in reply to wedgewood]

you are so right wedgewood😀

[Sleepybunny]

Hi,

Welcome to the forum. I'm sure you'll find people who understand here.

I've included some links that might be of interest.

Some links may have details that could be upsetting.

With a PA diagnosis, worth joining 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 website has lots of useful articles

pernicious-anaemia-society....

and a page for health professionals that your GP might find helpful

pernicious-anaemia-society....

Link about "What to do next" if B12 deficiency suspected or recently diagnosed

b12deficiency.info/what-to-...

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

UK treatment info in book is out of date. See BNF hydroxocobalamin link in this reply.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Some UK forum members struggle to get adequate treatment.

If this happens to you, see links below.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

UK B12 documents/articles

NHS link about B12 deficiency ( simply written, not much detail)

nhs.uk/conditions/vitamin-b...

Cobalamin is the scientific name for B12.

BSH Cobalamin and Folate Guidelines (detailed document, aimed at health professionals)

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

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

Link below has two patterns of treatment.

1) for those without neuro symptoms

2) for those WITH neuro symptoms

BNF Hydroxocobalamin

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

If you have neuro symptoms, make sure you get treatment pattern for those with "neurological involvement"

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

Local Guidelines

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.

Worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links above.

Some local B12 deficiency guidelines in UK are not helpful. See blog post below.

b12deficiency.info/gloucest...

Some local guidelines have been posted on forum so

1) try a search of forum posts using terms "local guidelines"

2) try an internet search using "name of CCG/Health Board B12 deficiency guidelines"

3) submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.

Best piece of advice I ever got was ......

to always get copies of all my blood test results.

I am aware of forum members who have been told everything is normal/no action on blood tests when there are actually abnormal and borderline results.

Accessing Health Records (England)

patients-association.org.uk...

Some people access test results and medical records with NHS app.

nhs.uk/nhs-app/nhs-app-help...

Some GPs and specialists have misconceptions (wrong ideas) about B12 deficiency. It might be worth knowing what the common misconceptions are in case you meet a doctor who has some.

Blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

UK treatment info has changed since above blog post was written. See BNF hydroxocobalamin link.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

I am not medically trained.

Let me know if you'd like more info as there's a lot more I could post.

[Narwhal10]

Welcome Loveslife123,

I’ll quickly answer your questions - injections wise being painful, subjective as everyone’s tolerance of pain is different. (They do not phase me).

Length of recovery is based upon how long you have been deficient, severity of deficiency (symptoms) and age. You can feel worse before better (nerves healing type of thing). Keep a symptoms diary.

Lots of knowledgable people on here.

Best wishes.

[Cherylclaire Forum Support]

You can already see how different we all are. Some people here have never been given a reason why they are B12 deficient or else been given many different reasons that turned out to be wrong.

So at least you now know what you have -Pernicious Anaemia. It sounds scarey but also a little old-fashioned in a Victorian way, doesn't it, like consumption. But having had a diagnosis is useful, in that you know where you stand. For one thing, you can look it up. There are medical guidelines regarding treatment and frequency. These need to be followed because PA has no cure as yet. So unless a cure is found, the treatment, B12 injections, will need to be lifelong, since you will be unable to get B12 from your food.

This may sound simple but it is surprising how many GPs, nurses and/or consultants do not understand this - or the range and severity of symptoms that lack of B12 can give you.

I did not feel any pain either from the loading dose (6 injections within 4 weeks for me) or the following maintenance dose (initially for me, that was 1 every 3 months). I did not feel anything at all. I had to ask each time "Have you done it yet ?"

That started way back in February 2016. It wasn't until three months after my treatment was altered back to 2 injections a week that I knew for certain for the first time that the nurse had completed the injection - on 23rd December 2016 ! YIPPEE and Happy Christmas - first sign of getting better. Not that it hurt at all, you understand - very professionally done. Just glad to feel something finally.

So I'd say it's all relative. I wouldn't have minded a bit of pain at that point.

But an injection of B12 doesn't need to hurt, and shouldn't ever if a nurse does it. If it does, it's possible that the nurse did not allow the B12 to warm up enough first (becomes more liquid) which can ache, or else it stung because s/he did not wait for the antiseptic to dry on injection site or left a slight droplet of B12 on the tip of the needle. Too quick with the plunger -that can hurt. B12 easier if injected slower.

How do I know this ? Because eventually, like some of the other responders above, I had to self inject..... and learnt the hard way ! Honestly, I've got to confess I was rubbish at it to start with.

I'm not sure that this is useful to you. After all, this is just what I experienced and not usual. But it may be a relief to know that even I can now do a painless injection. And if I can ......

a nurse should have no excuse !

Great name, Loveslife - am sending my best wishes.

[jillc39]

I found injections into my arms dreadfully painful - now I have them at the top of my leg and hardly feel it at all. But I had a fight on my hands to get the injections in my leg.