Hello! So glad to have found this lovely support site!
Just diagnosed with PA and my GP is starting me out with injections 1x per week for 4 weeks then 1x per month ongoing (1mg per dose). From a quick look at various posts on this site, I am seeing that most require much more for any solid improvement. May I get some opinions from those of you who know better what to expect and what you have experienced? I have found a few options for online purchasing through this site for which I am truly grateful. Thank you in advance!
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EllieMayNot
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If you in the UK normally you have hydroxocobalamin I M 3 a week for 2 weeks for your loading dose then depending on your symptoms go from there. If you on that regime as in ? Holland it sounds good to me. As you've not stated symptoms see how it goes and take it from there. I hope you see improvements soon.
One of the puzzling aspects of PA is that some people do perfectly well on what in the UK is the standard dose of 1 injection of hydroxycobalamin every 3 months. Whereas other people need injections far more frequently.
There is some recent research showing differences in gut microbiome between these 2 groups of people but otherwise, nothing is known about why this should be.
One thing is certain and that is that the people who do well on one injection every 3 months won’t be posting on this forum. Perhaps this gives a misleading impression that everyone with PA needs more injections than their GP will give.
I think you need to see whether or not the injection regime being proposed alleviates your symptoms or not. If it does that’s great. If it doesn’t, then it’s time to start thinking of alternatives and my first port of call would be to ask my GP to increase frequency before I went down the si route.
Lostor, as far as I can work out there isn't any agreed standard that applies across the US and protocols can vary significantly from state to state and even from hospital to hospital.
Hi Gambit62. Sorry if I have misspoke. I should have said that my experience as the mother of two daughter’s with Pernicious Anemia and living in the US is as I stated. We have worked with primary doctors, gastroenterologist and neurologist and this has been the recommended treatment with all.
Hi sweetie, if you have just been diagnosed with PA then these frequent injections are called loading doses, I cannot remember how many I had over the course of a few weeks but they were around 3 times a week, I am going back 18 years though. Anyway, the usual system here in the UK is to have 3 monthly (12 weekly) vitamin B12 injections at your GP surgery using Hydroxocobalamin, however, the PAS has been fighting to get more frequent injections and now government guidelines are injections every 8 weeks, a godsend for many of us.
So many PA sufferers struggle with the main symptoms of this autoimmune disease even after injections but should see an improvement but often not full health of being 'back to normal'. You will no doubt be incredibly fatigued still and have lapses in concentration 'brain fog', to me these two are the most frequent symptoms even with injections. Make sure you have an understanding doctor, over the years of having injections due to the ridiculous levels of fatigue and frustration in trying to live an active everyday life, hold down a job, study, etc I have managed to get my injections every 4 weeks.
The main thing is that you may not have been told so early on in your diagnosis is that you have to have the injections for the rest of your life. Your body cannot absorb vitamin B12 even if you ate masses of it in food as PA sufferers have a protein missing in the lining of their stomach called 'Intrinsic Factor' which in a normal person would absorb B12. Also the injections if you have not found out already really sting. I call them my bottle of lucozade due to the colour.
Also become a member of the PAS, Martyn Hooper who set this up and is a sufferer himself and his team are incredibly supportive and knowledgeable on PA. I feel for you but when I was diagnosed after struggling with fatigue since I was 13 and getting diagnosed at age 26 there was little information available, now there is and you are not alone. Best of luck with it all and remember if you need to rest rest, don't have a mad busy day as you will be exhausted, I have had to learn to pace myself (part age thing being 44!), it is frustrating but listen to your body, take care you.
It sounds to me like you possibly have a very good and knowledgeable Dr who is following a Dutch style protocol that to me seems much better than the UK one. It is less of a shock to your system and then is sustainable. If I had the chance again this is definitely what I would have opted for and believe if I had I may not need to inject so often now.
I suggest you go with it and see if it works for you - everyone is different.
I always appreciate your comments about the Dutch style treatment protocol and tailoring treatment strategies to individual needs.
I'm in the US. My loading doses were 1 mg cyanocobalamin per day for five days. Starting on day four and over the following two weeks, my neuropathy symptoms worsened dramatically. It was difficult.
I think the loading doses were just too much for me and that the Dutch style treatment protocol would have suited me better. After the five loading doses, my serum B12 was 467 (range 232 - 946). With weekly doses it eventually rose to about 1200, but would drop quickly when the frequency was reduced to every two weeks. Unfortunately, continued weekly injections were not an option for my doctor at that time. That has since changed and my doctor has prescribed 1 mg per week, which I am injecting as .5 mg injections twice a week.
deniseinmilden that’s interesting what you say. I have wondered why each time I’ve shortened the time between injections I’ve never managed to go back to the longer frequency.
I wasn’t given loading doses but started with injections every 2 months. They didn’t help much but I felt what little they did ran out after 6 weeks. I then had monthly injections and I realised I was feeling generally better, but not fit the whole 4 weeks. I’ve mostly settled on weekly but due to some fairly big sporting commitments recently I had 2 or 3 weeks of injecting twice a week and I’m seriously hoping I can get back to weekly. I made it last week but was ‘wading through treacle’ the last couple of days.
I kept a diary of how I felt when starting the 6 loading doses & I didn't notice any change, not until 2 days after my first 3 monthly which only lasted for 2 days, same with second 3 monthly.
My nurse said that due to my symptoms, if I lived in the US, I would be getting Injections every other day till symptoms improved.
I think a lot depends on where you are & who your Dr is.
My daughter uses a surgery only 5 miles away from me, when she was tested, the ranges when I checked her results varied from those from the lab my Dr used.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
I am not medically trained. I have written other more detailed posts that may be worth a look.
Thank you so much! I am in the US but stumbling upon this website has been very valuable! Unfortunately, my GP does not think it necessary to inject more than once a week for a month the once monthly ongoing. Am thinking that I may have to resort to the SI route. My daughter (26) is exhibiting all of the same symptoms as I am, only at a much younger age. I begged her to get the MMA/Homocystein tests as I know she has PA as well. I have suffered for over 20 years and been mislabeled with everything from Fibromyalgia to PTSD/Anxiety/Depression. I am just relieved to FINALLY have a clinically diagnosed answer and a proper way of treatment.
Thank you, all, for your wonderful insights and willingness to share your experiences and collective knowledge!
Your experience of being mislabeled is unfortunately very common.
I was tried on three different antidepressants that didn't make the slightest difference at all & I refused to take anymore.
It wasn't until I was finally diagnosed with PA over a year ago, found this place that it all made sense.
Unfortunately it makes us all feel like hypocondriacs until diagnosed.
Pleased you finally had a diagnoses after the many years of suffering you went through & hope all goes well for your daughter that hopefully, from your own experience won't have to suffer for the many years you did.
Thank you, yes, we have been in the process of being tested for Celiac and H Pylori, waiting on results for myself, daughter already has those in hand. Based on the recommendations from this forum, I ordered "Could it Be B12..." as myself as well as a number of family members and friends could benefit from the information. As I look around, I am starting to recognize other's who would very likely benefit from B12 therapy. It really does seem to be a silent epidemic!
"yes, we have been in the process of being tested for Celiac"
Which tests have you had for Coeliac?
UK guidelines suggest two first line tests for Coeliac.
1) TTG IgA ( IgA Anti-tissue Transglutaminase Antibody )
2) Total IgA ( Total immunoglobulin A )
Unfortunately UK GPs sometimes forget to do the second test Total IgA.
TTG IgA test checks for a particular antibody to gluten.
Total IgA test checks who has IgA deficiency.
Patients with IgA deficiency do not make the antibodies to gluten that the TTG IgA test checks for so they will test negative on TTG IgA test even if they have Coeliac disease.
There are other Coeliac tests that doctors can do if patient has IgA deficiency eg
Immunoglobulin G (IgG) EMA
IgG deamidated gliadin peptide (DGP)
IgG tTG
Another reason for getting a negative result in Coeliac tests is that not enough gluten was eaten in the weeks prior to tests.
If not enough gluten is eaten there will not be enough antibodies to gluten circulating in the blood to register a positive result.
I think UK guidelines for Coeliac disease suggest that patients should eat plenty of gluten in more than one meal a day for at least 6 weeks before blood taken for test.
In UK, anyone whose Coeliac type symptoms persist after a negative result in Coeliac tests are supposed to be referred to a gastro enterologist.
Coeliac disease can sometimes present purely with neurological symptoms and no gut symptoms. This can make it very hard to diagnose. Alternative Coeliac tests may be needed.
If you have auto immune conditions in the family, I hope your doctors will also exclude the possibility of other auto immune conditions that have some symptoms that may overlap with those of PA ...eg lupus, Hughes Syndrome ( also known as Antiphospholipid Syndrome APS), thyroid disease plus others.
If you've ever been bitten by a tick or lived in an area where ticks are common, has doctor excluded the possibility of Lyme Disease? It's one of the conditions I asked my GP (I'm in UK) to check for.
Symptoms of Lyme Disease can be very similar to those of B12 deficiency.
Might be worth putting any thyroid results on the Thyroid UK forum on HU. It's a very active forum. Probably worth mentioning you are in US if you do. Many on this forum have thyroid problems as well as PA or another cause of B12 deficiency.
UK doctors sometimes only test TSH which won't give a full picture of thyroid function.
Wow, thank you so much! I WAS NOT eating gluten at all leading up to testing. I will definitely inquire about that. Yes, I have a few autoimmune issues, Hashimoto's, positive for myelin basic protein antibodies in the blood, positive for parietal cell antibodies, lower mid range for total immunoglobulins. Negative for Lyme and coinfections, at least right now. Tested positive in the distant past. I believe that this is very much a multi-system disorder and that the B12 is only one piece to the puzzle. I have managed to get my thyroid antibodies down to 26 which is almost "normal". Thyroid hormones are in the mid to lower range of normal, my GP tests for all. Also have reactivated Epstein Barr virus and on antiviral therapy for that. We have ruled out a number of other autoimmune issues such a lupus, sjogren's, and others. Thank you, again, for all of this valuable information!
Everyone is different: my cousin is very happy on one injection every 6 weeks, I need one injection every other day but the NHS provides me only with the same frequency as my cousin- the rest, I have to do myself.
Alongside B12 deficiency, I also had low folate and ferritin, and found to have osteoporosis of the spine so given D3 on prescription. Have folate, ferritin and vitamin D checked as well: you will notice that many people who have B12 deficiency also had problems in these areas- so a good quality multivitamin and mineral tablet could get these to healthier levels that help the B12. Get the checks done first though, and look for where in the range your results lie, so that you can monitor improvements. Your doctor should keep a check on these.
If your B12 deficiency is due to Pernicious Anaemia, you might also have another autoimmune condition ( thyroid, psoriasis, vitiligo etc). Other family members might also have a history of one or more of these.
1 injection per month as a maintenance dose sounds good - my problems increased a lot when having to wait 3 months for my next injection, directly after having 6 in a month as a loading dose.
Don't get disheartened by all of this. As JanD236 has pointed out, all the many, many people who do well on a more usual dose (2-3 months here in England) do not use this forum often or for very long or at all. Make a list of all symptoms, then record on a chart frequency and severity of symptoms as they occur- this will really help your doctor, consultants - and your morale. I look back at my diaries now and can remember how much worse I was. You forget about some symptoms, especially if they fade away gradually.
For those of us who do end up needing more than is considered the "norm", we are relying on this newly-trialled research ( Pernicious Anaemia Society newsletter has details : might be worth joining if you haven't already ) which has already pinpointed a clearly identifiable distinction between the 2 groups. Perhaps proving a clinical need in the one group that doesn't exist in the second.
So let's assume you will be in the second group and will do well on what is being offered.
I think my own experience has been quite unusual. My injections started in February 2016 and it was December 23rd before I even felt anything at all : I always had to ask "Have you done it yet?" - this was because by then I had been having "reloading" injections: 2 a week for 12 weeks , because my MMA was found to be still raised, signifying a problem that still remains unresolved but GP (and me) believe is Functional B12 deficiency, which is an area where very little research has ever been done. YET.
IF things don't go so well for you, the methylmalonic acid test (MMA) may show an above-range reading. My GP has seen this only twice in her career, and both times, it was due to B12 deficiency deterioration despite injections signifying functional B12 deficiency. Rare, then.
Best of luck to you and keep in touch if you need information, support or answers to your questions. Easy to get overwhelmed.. so take it easy.
Thank you! Yes, I tested high on both MMA and Homocystein even though the B12 was in the middle of "normal". Fortunately, my GP was wise enough to recognize PA otherwise I'd be continuing on the downward spiral until who knows what....
So you have a concrete diagnosis of PA from an observant GP ? Excellent !
(Doesn't that sound weird ? But for some people, it can take 10 years or more to get that far. )
The sooner, the better. Stick with that GP. I think it's very helpful to have a GP that you can trust, one who looks at you, as well as their records on screen. Reason being they start to notice your visible symptoms and can determine faster when/if you are having a bit of a "blip". It's a highly individual thing, which is one of the problems with getting early testing.
My GP now says that she recognises my sore, split mouth as being an indicator of my current deficiency status. This is no longer a constant, but was - for probably 12 years !
I got used to it and never really thought to go to her just for that alone. In fact, I didn't even know it was related to B12 deficiency till it disappeared.
They have had me pigeonholed as having Fibromyalgia for almost 20 years, with an ever increasing list of symptoms, including occasional seizures. I would beg for more testing, my instincts said that there was more to this. Found a functional practitioner and, a year later, we finally have a solid answer! I wish that the medical professionals had better training, I'm sure that everyone here feels that way. How frustrating to know that all of us could have stopped the progression many years ago but very thankful to now have a valid treatment path in place.
….so not quite the happy story I was imagining, EllieMayNot . So sorry that you had to fight so hard while feeling so ill. Sorry they stopped looking and listening.
When I am ill, I look ill. I look like I'm deficient. I don't look like any well person of my age. So I know they know I'm not time-wasting. The primary care staff must also have been well aware of the shortfall between what they were giving me and what I needed to stop deteriorating. Even if I was the first patient ever to react this way.
I can't say that they are not trying to find answers for me. I have had a huge amount of GP appointments and referrals, all manner of scans, tests, consultants.
Something has gone missing at early diagnostic stage: many very common symptoms seem to have dropped off the lists that medical professionals refer to. I do not believe there can be many (if any) other conditions that can encompass all that we have had to suffer, so why is this such an arduous process of elimination?
Having said that, I still am aware of how lucky I am. I had 6 whole months of 2 NHS injections a week for a start. I didn't ever get to the stage where I was unable to walk at all, or get doubly incontinent, or have fits or tremors. I retained my job after 15 months off sick, even though I am now only able to work 2 days a week.
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New to this group 
New diagnosis, questions to ask GP
New here and would appreciate some advice
