Pernicious Anaemia Society
15,133 members10,693 posts

Wahoo I won....well kind of

Well after months of being fobbed off and a referral to haematology that never actually happened and a pretty blunt letter to the GP on Friday telling her that I needed intramuscular treatment I got my 1st loading dose at my appointment tonight!

I expected a bit of a firework moment but all I got was a sore arm and now feel absolutely wiped out and as if I've drank a few shots of vodka!! Is this normal?

I have 5 more loading doses lined up then she says they will be 3 monthly so there is my next battle!

She also prescribed folate 5mg daily (last folate level on 13/11 was 3.2 range 3.3 upwards) and said she will retest that along with ferritin in a month (ferritin on 11/10 was 14.7 range 13-300) does this all sound about right?

She acknowledged that she expects my b12 to shoot up so won't take any notice of that but will see how I'm feeling. Nurse who administered the jab says it will take me a while to feel better :(

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Hi Eoperez all that sounds good to me and sadly the nurse is right - it may take some time before improvement and things may even get worse.

Take one day at a time in the knowledge that you are on the right road at last.

I'm not medically trained but have had P.A. for 46 years and I'm still "clivealive" aged 76.

I wish you well

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Ah pants, I wasn't prepared for things to get worse first, but for the first time in ages that light at the end of the tunnel no longer looks like a train!

Thanks for your reply :)

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Not to worry about the feeling wiped out, as many, myself included, feel that way after getting an injection.

I had been hoping for energy from the injection but that probably only happens to folks that are sufficient prior to getting an injection for "fun."

Im in US, so get weekly injections. The morning after my first injection i woke up and could take a deep satisfing breath. I hadnt even realized i had a breathing issue as i was so far gone by then, horrid memory, no concentration, extreme exhaustion, that i hadnt thought to consider not being able to take a deep breath as an issue.

Congratulation on your success through perseverance!!!

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Thank you KimberinUS

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I have had real difficulty recently taking a deep breath and am so exhausted all of the time so even a slight improvement soon in them would be great.

Weekly injections sound much better than what we get here! Pleased you are feeling the benfots from them.

The haematologist (that I didn't even see) wrote in their letter that it's hard to say whether there is a true benefit from b12 injections or people just enjoy the feeling it gives them.....hmmm don't really feel like I'm enjoying feeling like I've been hit by a bus!! Guess they maybe just jab themselves for an uplifting feeling!

At least I know it is normal to feel so tired after and can prepare for my next one on Thursday.

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If the injection is given slowly you should Not have a sore arm at all. I had one nurse who I started to avoid as she was always hurting me by doing it too fast. Helps to let your arm just dangle, try to relax your arm this does help. Gradual improvements is what happened with me, it took month rather then days. Then the fine tuning starts , when to top up, sometimes sooner then you anticipated.

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ACritical my arm is ok, was just a bit stingy when it went in and was a little sore after but fine by bed time.

My legs last night felt like jelly and as if they did not belong to me, weird sensation so hopefully I don't get that after next jab!

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I am in a very similar situation, after successfully arguing my case with my dr I started treatment yesterday. Our local CCG guidelines is 5 treatments then 2/3 monthly so I have ordered some to do myself. It’s been such a battle and I still don’t feel I have a definitive answer - IFAB test was negative (gp reluctantly admitted this was not conclusive - especially in light of my Granny and Aunt having PA). GP has said she will refer me to a neruologist if the treatment isn’t successful. I’ve been prescribed iron and have got myself some methyl folate and vit c which the de didn’t feel was necessary, despite being at bottom of range for folate, sigh)

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Kookookichoo, I hope you are soon feeling better. I have asked the dr to treat me as IFAB-Neg-PA as my intrinsic result was also normal and I was not bleieved that this was so in about 50% of cases until the haematologist put the same in her letter!

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HI,

Glad to hear you got treatment, it is such a long drawn out fight for some people.

"The haematologist (that I didn't even see) wrote in their letter that it's hard to say whether there is a true benefit from b12 injections or people just enjoy the feeling it gives them.."

I felt upset on your behalf when I read that unhelpful comment above.

This reads as if haematologist thinks there is just a placebo effect to B12. I'd like to tell haematologist that the true benefit of b12 injections for those with PA and other forms of B12 deficiency is that it keeps them alive.

Pernicious means deadly, fatal which PA used to be be before there was raw liver treatment and then B12 injections.

When I started treatment, several of my neuro symptoms disappeared eg strange limb movements stopped, and other symptoms improved. I don't think it's hard to say B12 injections benefit people when injections stop neurological problems.

I hardly think there would be B12 treatment advice in BNF British National Formulary Chapter 9 Section 1.2 and BSH Cobalamin and Folate Guidelines for a treatment that only had a placebo effect.

PAS or B12 Deficiency Info website might be interested in hearing about haematologist's comments.

PAS

pernicious-anaemia-society....

B12 Deficiency Info

b12deficiency.info/

Link to letters about B12 from doctors to patients,

b12deficiency.info/letters/

Some show appalling ignorance about b12 but a few show there are some really helpful understanding doctors out there.

"I have 5 more loading doses lined up then she says they will be 3 monthly so there is my next battle!"

In UK, loading doses for people with B12 deficiency with neuro symptoms are only limited by the length of time in which symptoms continue to improve.

So if a person is on neurological loading regime ( a jab every other day) and symptoms are still getting better after months of being on loading doses then my understanding (I'm not a doctor) is that loading doses should still continue according to BNF Chapter 9 Section 1.2

BSH Cobalamin guidelines suggest a review of loading doses after three weeks so in reality it may be difficult to get more than three weeks of loading.

Info for your next battle...

List of symptoms (I always include all my neuro symptoms)

pernicious-anaemia-society.... see Checklist PDF on right of page

UK B12 treatment for B12 deficiency with neuro symptoms

BNF Chapter 9 Section 1.2

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

BSH Cobalamin and Folate Guidelines, treatment info is a quarter through guidelines.

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

Point 1 in next link is about under treatment of B12 deficiency with neuro symptoms.

b12deficiency.info/b12-writ...

Consequences of under treatment

PAS news item

pernicious-anaemia-society....

PAS article SACD

pernicious-anaemia-society.... See Page 2

I am not medically trained.

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Sleepybunny yes that comment really irked me too, perhaps she has had a go of some herself and it gave her a pleasant feeling, how I felt last night was far from pleasant! I think I will drop the PAS & B12 deficiency info website a line and let them know of the comments.

I have phoned the GP practice this morning and asked them to pass an urgent memo over to the GP advising her that my loading injections should be every other day rather than 3 per week. In my letter that I wrote to her on Friday I highlighted all of my symptoms from the PAS society including those of a neurological nature so hopefully she will pick that up soon. My next jab is Thursday so that is ok but one after that is Sunday when really it should be Saturday. I will print out the links and drop them in for her also, thank you.

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Hi,

Have you considered writing a polite letter to GP expressing concerns as my understanding is that letters to GPs are filed with medical records and therefore are harder to ignore.

Link about writing letters to GP about B12. Point 1 is about under treatment of neuro symptoms.

b12deficiency.info/b12-writ...

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Sleepybunny. Thank you for the useful links. The letter 3 is so close to my situation.My neurologist just closes up if I mention B12. Instead he arranges a barrage of tests(some painful)+ physio and occupational therapists.Costs to the NHS ££££s cost of even a trial of B12 therapy for neuro symptoms,very little in comparison. GP has same reaction no reply just stares down at her desk. I`ve already changed GP practice and have nowhere else to go(small town).

The comment"pleasant feeling" really touches a nerve(no pun intended) I would be happy just to be able to feel my feet,walk normal, have some energy.

Off to read more of your links :-)

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I really hope you get the help you need. I rang the pernicious anaemia society for advice and they were really helpful.

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Hi Eoperez ,

Sleepybunny is right about letters to GPs - be careful about the wording as your GP seems at least to be concerned about doing the right thing and is amenable - s/he could become worried that they are ill-equipped where B12 is concerned, and pass your treatment to the haematologist (!!).... which is exactly what happened to me, and it was only then that I understood how little everyone else knew in comparison to my doctor! A little bit late and no easy way back for you, once GP has acknowledged lack of experience in this field and allowed consultants to make the decisions.

I saw 2 haematologists: unbelieveably, one thought B12 to be highly addictive, and the other thought it to be toxic and carcinogenic. Clearly (to everyone but me anyway), I was not going to be able to make them see sense/ read any of the relevant research and was unlikely to be able to deliver any sort of coherent argument for better treatment myself at this point (cognitive/ memory problems being the main reasons why I was there and not at work).

The result was that I went from 2 injections per week, to 1 injection per month, to advice from the haematologist to halve that to 1 injection every 2 months (even this is illogical, given their beliefs)- which I already knew would make me deteriorate (again) and so I started self-injecting very reluctantly and mainly out of fear of the only offered alternative. Not that I was afraid of the pain: I'd rarely had an injection I could feel at all, and had had more than 2 years of pain from my symptoms. It felt a bit like failure or giving up, because being a teacher, I believe education is the key to individual and generational progress especially when you are an acknowledged expert in your field. To stop individual learning is to halt personal progress- to stop learning as an expert is to deny others' progress.

So really don't get stuck with having to rely on the whims of a haematologist who believes that B12 injection gives some sort of high to anyone. It's just not true, except perhaps for the extremely healthy - a section of the population that they do not get to see. It just stops you from becoming a lot worse. Such a person could cause you serious harm.

As for me, I've been self-injecting every other day since September, and seeing undeniable results. I haven't been able, mentally or physically, to work since September 2016, but am now planning a phased return programme with my employers for January 2018. Result !

Am I better? No, just much better than I was. Still a work in progress, and still continuing with this regime until I am certain that no more progress is possible for me. Only I will be able to decide that, and that is as it should be. I remain hopeful.

Do write a letter - just ensure it is carefully worded. Sleepybunny gives very sound advice.

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Cherylclaire @sleepybunny the haematologist wouldn't see me as my symptoms not as they don't see patients like me in their clinic, her letter did however persuade the GP to treat me which was something they initially refused so at least some progress has been made. 1 GP didn't want to know at all at my initial consultation months ago.

My phonecall today was futile, I have to speak to the GP (which is what I'd wanted to do when I called!) She's now not back until Friday so I will have to try and get a phone consultation with her then.

I had 1 shot yesterday and was prescribed 6 more over the next 2 weeks. I didn't realise they were glass and smashed one yesterday when it fell out of the box so really hope they replace that one.

I get the impression that the GP expects me to feel a million times better after my loading doses and if I don't then they will review me then. I guess I'm not going to have such a dramatic improvement after everything I have read of others experiences.

I think a polite letter is in order now and think I will also ask about being taught to self inject. The nurse said it is a big injection to administer yourself but guess I'll just have to be a brave girl!!

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Hi,

Cherylclaire makes a good point about wording a letter very carefully. Some GPs find assertive , well-informed patients difficult to deal with.

"get the impression that the GP expects me to feel a million times better after my loading doses and if I don't then they will review"

It took weeks even months before I showed some improvement. I had been symptomatic for years and had to resort to self treatment as all I got from NHS was one set of loading doses.

If a UK patient with B12 deficiency with neuro symptoms is not on the UK recommended pattern of loading doses (see above post) then they may not be getting enough B12 to start showing improvement.

Lots of B12 info in pinned posts on the forum.

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Hi Eoperez. I'm so glad you're getting your shots. Hope your symptoms ease soon

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Thank you :)

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