To start, I have been having strange symptoms since I was 16 (now 21). Things such as 'funny turns', gallbladder issues, fatigue, recurrent protein in the urine, feeling sick, stomach pains, mood and detachment issues, lack of focus along with a number of other symptoms.
I was finally diagnosed with PA about a month ago with a level of 100. Also a folate deficiency, which I have been given a 3 monthly dose of 5mg folic acid and low levels of iron.
I started receiving my loading doses of 5 hydroxocobalamin injections over 10 days. My final injection for 12 weeks was today and it got me wondering when will I notice a difference? Soon I hope.
I'm just hoping to get an insight into other people's diagnosis, treatment and how they feel after the injections. Thanks for reading guys☺
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Emsx
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Hi Emsx there is no set timeline for improvement of symptoms as a lot will depend on the amount of "damage" that needs to be repaired. At least now you are on the right road and hopefully you will start to feel better soon but be prepared that some symptoms may appear to get worse before they get better. Don't get too worried about this as it is not uncommon and it can even be taken as the B12 doing its job.
It's a good idea to list all your symptoms and daily rate them from one to ten on their increased severity or improvement adding or deleting as appropriate.
Please ensure that your Folate level is monitored after you have finished the 3 months course as this is essential to process the B12 you are having injected. Personally I have taken 1 – Folic Acid 400μg as a "maintenance dose" for more years than I can remember.
In my case it was 13 years after the removal of two thirds of my stomach due to a perforated ulcer at the age of 17 before I (eventually) got the P.A, diagnosis in 1972 by which time I was a walking "Zombie" on top of which I had a sick wife with heart problems and two daughters under six.
However, be assured, there is life after P.A. as I'm still "clivealive" at 75 and I wish you all the very best.
I was originally given the option of having to eat raw liver three times a day or having injections of cyanocobamalin every four weeks for the rest of my life - I chose the injections and am still on them today.
You will be on hydroxocobamalin which is deemed to be retained longer but when I was tried on that in the 1980s I couldn't last the three months between injections and during the last twelve moths have managed to have the frequency increased to every three weeks because of the return of some neurological symptoms in the run up to the next one.
Some doctors baulk at increasing the frequency of injections and I had a "one size fits all" guy who refused to budge from "what it said on the tin" (with apologies to Ronseal). However I wore him down in time so that I was allowed an occasional 3 week injection which my current doctor has now made permanent.
I would be interested to know the frequency of your maintenance doses eight weeks or twelve weeks?
According to both the BNF and NICE patients with P.A. should be receiving B12 injections every eight weeks
I must praise my GP who is very much reliant on how I feel and is very efficient. He said I should have five loading doses over 10 days with folic acid 5mg for 3 months, then injections every 12 weeks after the loading doses.
I asked the nurse about needing them sooner and she said I will have to ask the GP so I have booked an appointment for after my abdominal scan in around 14 days. I will definitely suggest more frequent injections!
If you have neuro symptoms (eg balance issues, memory problems, pins and needles, tingling, tinnitus) then you are supposed to get more intensive treatment than 5 loading doses then injections every 3 months. In UK if you have PA or B12 deficiency with neuro symptoms you should have loading doses every other day for as long as symptoms continue to improve (this could mean loading doses for several weeks even months). Once symptoms are stable it should be an injection every 2months.
Even if you don't have neuro symptoms, the BNF says people with PA without neuro symptoms should have 6 loading doses over 2 weeks not 5 ........ so i don't understand why you only had 5 loading doses.
Sadly there are GPs out there who are unaware that the treatment for PA with neuro symptoms is more intensive so make sure GP knows of any neuro symptoms you have. A lot of people on this forum, who have neuro symptoms, have to fight really hard to get correct treatment.
Inadequate treatment of B12 deficiency can lead to permanent neuro damage.
UK b12 treatment info
In case GP is unaware that treatment for PA with neuro symptoms is more intensive, the info is in
1) BNF (British National formulary) Chapter 9 Section 1.2
All UK GPs have access to BNF. Your GP is very likely to have a copy on their bookshelf in his consulting room.
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is chair of the PAS.
"Could it Be B12" by Sally Pacholok and JJ. Stuart
PAS membership
Some people on forum join the PAS (Pernicious Anaemia Society). They are helpful, sympathetic and in some cases can intervene by writing letters for members.
I'm not too sure why I have only received five injections as loading dose but the nurse said this was standard for all patients getting B12 injections at the surgery.
I suffer from a few of the neuro symptoms and my GP actually asksed me to prepare a list of all of my symptoms which I gave to him the day he told me I had PA.
I am due to see him again in 2 weeks so will further discuss everything and see if I can get more frequent injections.
Thank you for your highly informative post. I definitely have lots of questions to ask and have learned a lot more😊
That's encouraging to hear that your doctor has aasked for a list of symptoms. It's important to be clear and persistent about your symptoms if you do not feel you are making progress.
If you click on the BNF link below and look in the section headed "Dose" it specifies 3 loading injections a week for a fortnight (which makes six in total) for those without neuro symptoms.
If you suffer from neuro symptoms it is vital that you get the correct level of treatment to prevent permanent neurological damage. Some people end up with SACDSC, sub acute combined degeneration of the spinal cord. PAS members can access an article on SACDSC in library section on PAS website.
I believe Martyn Hooper, chair of PAS mentions SACDS in his books and on his blog.
Perhaps you could mention to GP that in the BNF (probably sitting on his desk or bookshelf) that it says loading injections every other day for as long as symptoms get better for those with neuro symptoms (not 5 or 6 over 2 weeks)) followed by injections every 2 months. The GP might even let you look at his copy.
The "BSH Cobalamin and Folate Guidelines" mention the possibility of a review of loading doses after 3 weeks for those with neuro symptoms.
Sometimes GPs can be irritated when decisions are questioned face to face so it can sometimes, in my opinion, be better to put things in a polite letter. My understanding is that letters to GPs have to be filed with medical records so are a record of issues raised.
This next link may be useful in helping you to get treatment for B12 deficiency with neuro symptoms. it has links to useful articles. As I mentioned above, person who runs website can be contacted by e-mail and is very supportive.
As he has asked for a list of symptoms, I'd suggest you include all your neuro symptoms. Perhaps you could use the PAS list and tick all your symptoms plus add any not on list?
"I was finally diagnosed with PA about a month ago with a level of 100"
How was your diagnosis of PA confirmed? Did you have a positive result in IFA (Intrinsic Factor Antibody) test?
Some people on the forum have experienced having their B12 injections withdrawn and because they lacked proof of a PA diagnosis, it was difficult to get injections re-instated. Some people get copies of medical records, IFA blood tests, consultants letters or GPs letters that confirm PA.
Flowchart above mentions when Pernicious Anaemia or Antibody Negative PA can be diagnosed.
May well be worth joining the PAS (Pernicious Anaemia Society) as they may be able to assist you in getting correct level of treatment or at very least able to point you to useful info.
Probably best to contact PAS by telephone. there is an answerphone so messages can be left, may take a couple of days to get an answer.
PAS tel no +44 (0)1656 769 717
Loacl NHS B12 Deficiency Guidelines
I think it's possible that the GP is using a copy of local NHS B12 Deficiency guidelines rather than the "BSH Cobalamin and Folate Guidelines".
Some of these local B12 deficiency guidelines have not been updated for years, some not updated since BSH Cobalamin guidelines came out in 2014.
It may be interesting for you to get a copy of local NHS B12 deficiency guidelines. When I got a copy of my local guidelines, it helped me to understand why I had not received the treatment I expected.
These local NHS B12 guidelines can be found by
1) an internet search
2) a search on local NHS website , possibly in haematology section, under haeamtology policies or guidelines
3) A FOI (Freedom of Information) request to local NHS website, requesting b12 deficiency guidelines for local area.
4) Contact CCG if in England or equivalent in NI, Scotland, Wales
I am from the US so they do loading injections differently. I'll explain. I was diagnosed with PA around 8 weeks ago and started loading injections. In the US you are prescribed one loading dose a week for 6 weeks then one a month for the rest of life (or less, depending). After four weeks of these loading shots I still had symptoms, mainly fatigue. I can honestly say things got better after that though. Every day is different of course but in general things get easier slowly. I am on cyanocobalamin injections though.
My GP suggested 6 loading doses (1 per week) then I continued 1 per week as I was supposed to have 1 every 3 months after the 6.
I cheated and used to go straight to the nurse every week and say I need a shot instead of going to the GP to get one.(I don't advise u do this) but at the time I knew it was almost impossible to get more than 1 every 3 months.
I started noticing improvement after 8-10 injections(so 8-10 wks).
After that I explained to my GP the great improvement I had noticed and would like to try continue with 1 per month. I had to literally beg my GP just to try for further 3 months or so.
I started noticing total change mentally (as I also suffer from depression and been on regular meds for 18yrs!) and physically all the fatigue and long list of low B12 symptoms.
I continued for another 6 shots instead of 3(1 per month).
Then I had my annual blood test and my B12 was on 2000. My GP stopped the injections at that point.
My symptoms started to return within 2-3 months and my B12 dropped to about 350.
I am now on my 6 loading doses which I've already had and chose to self inject as needed(to experiment). I start going downhill in my 3rd week so inject every 2 weeks and remain fine.
No cheating this time as I have found where to buy B12(Hydroxocobalamin) online fairly cheap from Germany.
Instead of begging my GP for injections I will self inject as needed. I think it's been long enough for me to know that after 6 loading doses and probably another 4-6 doses (1 per week) I drop down to 1 every 14 days and take Folic Acid 400ug daily and most of my symptoms have gone. Change of life.
In short I think u need 6 loading doses minimum and 1 per month for 3-4 months and you'll feel a lot of improvement.(so that's 6 weeks for loading then another 4 months (1 per month), that's about 5 and a half months. My B12 was also very low, but if I stuck to GP guidelines I would have had to wait much longer or even given up thinking it doesn't work.
I'm not a professional nor a GP but I'm just telling you that it does work, u see the change week by week or month by month. It's not a super quick thing but I think the guidelines for PA are way too low and sometime in the future you might have to decide to self inject which is not expensive and definitely worth trying as most if not all GPs will stick to the guidelines.
I'm in UK but USA guidelines of 6 loading doses and 1 per month is much better.
Sorry for the long reply, but I hope it helps even a little. It gets too complicated sometimes with all the results and guidelines.
You simply need more B12 jabs more often to make it simple.
Please don't do any cheating like me but I would talk to my GP and if your symptoms don't improve tell him about purchasing and self injecting and he might do the best he/she can.
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