How long does it take for symptoms to... - Pernicious Anaemi...

Pernicious Anaemia Society
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How long does it take for symptoms to go?

ItsJustMee
ItsJustMee
18 Replies

So I get my hydroxocobalamin injection every 12 weeks, this time I made it to about 11 weeks and started to decline rapidly. Gasping for breath, struggling to function...

After trying to manage for a week with sprays and patches (which I'm not even sure does much) I finally got to my injection day.

Well that was 4 days ago and I still have symptoms, they are easing off as the days go by but I still don't feel good.

How long does it take once you guys have had yours until you feel right?

Ps. The reason I have to wait is because my doctors only go by *normal range* blood tests and don't give a crap about symptoms, usually say its just my anxiety and they're adamant on the 12 weeks being guidelines saying giving an injection early is useless as levels are still within range.

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clivealive
clivealiveForum Support

Hi ItsJustMee you should point out to your doctor the latest BNF guidelines for patients with neurological symptoms as follows

"Pernicious anaemia and other macrocytic anaemias with neurological involvement

By intramuscular injection

For Adult

Initially 1 mg once daily on alternate days until no further improvement, then 1 mg every 2 months."

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

Testing once injections have started is pointless and unnecessary and "being in range" is irrelevant and you cannot "overdose" on B12.

Do you know what your Folate level is?

I am not medically trained but have had P.A., just one of the causes of B12 deficiency for over 47 years and I wish you well.

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ItsJustMee

Thanks clivealive.

My folate is always high ish (usually over 20).

I've had PA (caused by surgery) for over 20 years. I used to get my injection every 8 weeks which I was doing well with, but about 9 - 12 months ago they decided its going back to 12 weeks because my levels were high (around 900) prior to Injection. I get the feeling that they have zilch idea or care about any of this.

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clivealive
clivealiveForum Support
in reply to ItsJustMee

I think you need to stand up and wave your arms about and insist on more frequent injections.

I too had gastric surgery 60 years ago and after 13 years of struggling was eventually diagnosed with P.A. Sadly doctors are not educated to deal with it - "it's only a vitamin for goodness sake".... but without it you and I would die - simples

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ItsJustMee

Mine is due to having a large chunk of bowel removed which included the section that absorbs b12, so I basically get zero from anything except my injections.

I will try and get in Monday, but I've tried making a fuss and they always go back to blood test result numbers and say I don't need it.

Maybe it's time to swap doctors.

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clivealive
clivealiveForum Support
in reply to ItsJustMee

If you can't get them to read the BNF Guidelines you might think to

join the Pernicious Anaemia Society click on the link below and scroll down

healthunlocked.com/api/redi...

The last time I looked it cost just £20 for a year's membership and they have been known to intervene with member's doctors plust there is a host of useful information available.

Is it possible that you can take someone with you who, "knows what you are like" in the run up to your next injection, to the doctor's appointment as it will make it difficult to pooh pooh you in front of a witness.

You are right - it is in the Ileum that "the Intrinsic Factor binds to the B12 and the "B12/IF Complex" enters the cells on the wall of the Ileum after binding to receptors on the surface of the Ileal cells, allowing it to enter the blood stream".

Take care now.

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Nackapan

I would fight for at least every 8 weeks. 10 months in. I'm still on B12 injections every 2 weeks. Every time I think I will try and go longer I feel I need it. Sometimes I feel a bit better sometimes a bit worse for a couple of days. I'm making some improvements but very very slow and not in a linier line. Had a rough Friday night and Saturday. He's pain and feeling just ill. Bit scary actually. Today im just back from walking around the block as so stiff and fatigued. So to answer your question . I still don't feel right just better than last October/November time when I was at my worst . Seemingly moved forward in January /February. Then got stuck again it seemed. No rhyme or reason at times. Resting, pushing ect. I do find it get some sort of surge of wanting to do more before I plummet . I think that may be to do with a raise in seritonin of another chemical before head pain hits?? Definitely try for more injections. The guidelines have changed. Bnf clearly state 8-12 weeks or more frequent with neurological or other symptoms. Ask for a trial. Once on injections they shouldn't be testing your levels. Itso a problem everywhere.

.

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Nackapan

Just read Clivealives reply somehow I managed to miss it before writing. I akso saw your reply. How can they refuse if you have had bowel surgery? ?

I hope you get what you need soon. TC

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ItsJustMee
ItsJustMee
in reply to Nackapan

They refuse because they go on my levels and not my symptoms.

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Nackapan
Nackapan
in reply to ItsJustMee

Do highlight the bnf guidelines. My gps changed . Write to the practice manager perhaps. I know it's a battle. I was very ill when refused more than 3 monthly. I had to discuss 1:1 with a Gp. That was after a nurse and 2 others refused.

They have a duty to treat you at least 2 monthly. They shouldn't be doing your levels . Mine still did though. But not anymore.

They perhaos are not up to date

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Ritchie1268

Sadly, many GP's do this.

I would do what Clivealive has suggested & join the PAS & give them a call explaining your situation, they will help.

Most of us have to buy our own B12 from Germany & inject ourselves as the guidelines are not a "One size fits all"

Good luck

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ItsJustMee

Yes, I decided to buy it from Germany (versandapo) and self inject. I can't be dealing with yet another confrontation just to be fobbed off as I am also autistic as well as PA.

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Elizajoe

Hello, sorry you're suffering. Just to say you'll never get well on NHS protocol for B12 injections. They got us all in the same sinking ship. I self inject for the last couple of years now and when I first started doing subcutaneous injections I got the strangest feelings in my feet hands tongue face of tingling prickly pains and numbness. This went on for months. I would inject everyother day for months. Untill I felt healed , no more symptoms. I now inject IM. I didn't realise on NHS protocol how unwell I really was and would blame my thyroid hormone replacement because I'm also hypo. I'm glad I took matter's into my own hands . You can get used to feeling crap as normal and drag yourself around and complain. I'm not begging any gp or any medical professional for a vitamin. I ain't suffering or dying for non of them . My health my way. Good luck.

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ItsJustMee
ItsJustMee
in reply to Elizajoe

Hi, thanks for your reply. How much were you injecting during your every other day schedule? Was it 1ml of hydroxo?

I bought my hydroxo and needles last night so hopefully get it by tomorrow or so. Chose medisave's 2ml syringe 23g 1" and versandapo's b12 depot 1ml 1000mg hydroxo.

Quick question, what do you guys do with your used sharps once the sharps bin is full?

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Hanneke12

I hand them in at my local pharmacy. They dispose of them.

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Elizajoe

1 ml 1500 ug hydroxocobalamin every other day for me, 6 or so months.

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Coachlady11

My doctors are the same. After asking for more frequent injections a number of times and being refused every time I resorted to self injecting.

A lot of people on this forum have had the same experience with their go and with their help and advice SI was easy to do.

I now inject when I feel I need it. Have recently started running and currently inject once a week and am feeling pretty good on that.

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ItsJustMee

That's good to know, and yes I've decided the same.

I've always wanted to be fitter but I've always become ill after a day or so of exercise, probably been ridiculously low on b12 for a long time.

I hope I can get to a level where I feel the same as you.

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Judithdalston

I diy b12 injection ( well husband does it), when I feel ‘off’ having been shown by a pro.medic how to do it. I find it very painful but gp wouldn’t even test for deficiency despite many symptoms that are generally better after loading doses, seem to need it about every 10-12 days.

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