Is there anyone who really feels benefits of b12 injections?

[Av42]

Hi, I don't usually post on any sites but after recently being told I have pa have read just about every horror story on line going. I have just had loading doses and although don't feel marvellous feel like I can still get out and about. Is there anyone out there who really feels the benefits of injections even after some time.

[clivealive Forum Support]

You are still alive - without them you will be dead.

Believe me as I've had P.A. for 45 years and the B12 injections have kept me "clivealive"

They are not an overnight cureall. It may take some time for improvement to take place as a lot will depend on how long you have been deficient and how bad is the damage done to your nerves.

I wish you well for the future - and may it be a long one with B12 and Folate

[Av42 in reply to clivealive]

My levels were 137 but unsure what that means. Was told folate low and prescribed folic acid for three months.

[clivealive Forum Support in reply to Av42]

Depending on the range <from - to> you were probably B12 deficient caused by the P.A. which make it impossible for you to absorb it naturally from food - hence the need of injections for the rest of your life.

You need the folic acid which with the B12 you are having injected helps your iron to make red blood cells.

[Av42]

Thank you so much and if you've been taking them all this time definitely not all doom and gloom.

[Sleepybunny]

Hi,

Are you in UK?

PAS

Might be worth looking at PAS (Pernicious Anaemia society) website.

pernicious-anaemia-society....

PAS tel no [phone] answerphone so messages can be left

[Av42]

Thanks had a read and has helped me understand a bit more . How long have you been on injections and how do you feel most of the time ?

[griff44]

I've just had my loading doses, my last results were 92 18month ago and treated with tablets, low again recently 117 so they insisted on injections, I feel different/better although tired and a bit anxious but I am led to believe my nerves are repairing themselves following lack of B12 which causes nerve damage ?? Not sure if this is scientifically proven but at least I'm increasing my levels so a positive none the less, take care I'm sure you will feel better soon

[Av42 in reply to griff44]

I have also had some anxiety and sweating and just trying to get through it . I have been taking berocca tablet along with my prescribed folic acid but today I have not had a good day . It's good to have people to share this with as although supposedly common I am yet to meet someone to ask if you really do feel better. As today I feel worse than before I had them.

[clivealive Forum Support in reply to Av42]

Ironically Av42 your "feeling worse" may be taken as a good sign that the B12 is starting to repair the damaged nerve endings and all of a sudden your brain is getting bursts of signals from parts of your body it had previously "forgotten" about.

It's a good idea to make a list of your symptoms and grade them from one to ten on their severity and each day note any improvement or otherwise. Then if you ever have reason to go back to your doctor to ask for an increased frequency of injections you will have records to show him/her.

I am not a medically trained person but know what it is like to be transformed from a "Zombie" to a human being again.

[clivealive Forum Support in reply to griff44]

You need to have you Folate level montored. Has it been tested griff44 ?

[griff44 in reply to clivealive]

Yes all other results are fine, the only issue was low B12, iron levels are at 45 but DR says within range. B12 supplements worked first time round but when I stopped levels reduced from 175 to 117 (initially 90 before taking supplements) now offered injections for life so happy to proceed, at least I know I'm getting what I need this way

[clivealive Forum Support in reply to griff44]

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

[griff44 in reply to clivealive]

I'll ask the DR as they're doing another blood test this week as my white blood count is low , he said previously folic, iron are all ok but you never know, if they allow me a copy/print out of my results I can post.

[Av42 in reply to griff44]

Can I ask how come you were given supplements first and how you're feeling in general as your levels were even lower than mine.

[griff44 in reply to Av42]

I guess the Drs first protocol is to try supplements, which they did and then retested me, levels went from 90 to 175 and they basically said your good to go, I've had all the symptoms I.e tiredness, brain fog, changes in the way I think, I just got used to it as I thought it was my anxiety symptoms so tried my best to push aside, the dr made me believe it was all in my head too that made it worse. I am starting to feel better now but my levels have been low for best part of two years now that I know of, could have been longer so I guess it could take longer to fully recover ? I don't and never have had pins/needles in feet/hands so hopefully no neurological problems but I'm not clued up enough to say otherwise. The good news is that we now know so we can continue with our treatments - hopefully one day I will be back to normal, would be nice after all this time

[Av42 in reply to griff44]

Only asked about supplements as I have been put straight onto injections. Anyway hope everything gets better soon .

[MoKayD in reply to griff44]

I felt a little hyper after I started getting my B12 shots. I also had trouble sleeping the first few nights after a shot. I did some research and read that B12 needs a lot of calcium, magnesium and potassium to work. I started making an effort to eat yogurt and bananas, etc to up my calcium and potassium intake and I take a magnesium supplement most nights before I go to bed. The hyper feeling and insomnia are both gone. Hope this helps you.

[Av42 in reply to MoKayD]

Sorry replied to your message lower down.

[Av42 in reply to MoKayD]

Have you been on injections long and have your other symptoms got better.

[MoKayD in reply to Av42]

I started getting injections in January of this year. After my weekly loading doses my doctor put me on a monthly maintenance shot. From the first shot I felt better. I did have some trouble with my blood pressure going up but that has leveled off. I feel 20 years younger now. After dinner I have energy to do things instead of crashing on the couch. It's wonderful stuff.

[Av42 in reply to MoKayD]

I have had loading doses and have to wait until October until next one. It is so reassuring to hear from someone who has had such a fantastic response to treatment.I have a child of eleven so am still doing mum stuff but not feeling that great doing it. Am glad to hear for you it has been great so could be for me too .

[LtAngua52]

Well, I had been told that I woukd be stuck permanently in a wheelchair and then mild dementia was suggested. I was told I would probably be in a care home within two years. In short, I thought my life was over. That was 17 months ago. No more wheelchair, occasional use of a walking stick, but that is more to do with mechanical issues. As for the dementia? Last September I returned to education to study for another MA.

I have a life now, it wasn't over. However, I had to fight the medical profession to convince them I had b12 deficiency and that injections would help. I had to go private initially for the NHS to accept it. So yes, it may take time, but I'm definitely better with b12 injections. I hope you have the same success, but be patient. You may need to take control of your own treatment to make sure you get injections as frequently as you need them. Good luck!

[Av42 in reply to LtAngua52]

Hearing from you has perked me up so much was beginning to think treatment only made you worse but I hope I can post some positive news like that .thanks and great to hear a true success story. Thank you . Was beginning to think life as I knew it was over 😊

[jlee0614 in reply to Av42]

My one of my main symptoms is my skin becomes very sensitive. My hands hurt so much I don't to pick anything up and when I go to bed if there is a wrinkle in my sheet it really hurts. But after taking my first injection it's much much better after my second shop it is livable. I've just taken my fourth weekly shot and I have echos of the pain. So my answer is yes the shots work some of my other symptoms don't go away as dramatically but they are slowly lessening.

[Av42]

Thanks will definitely invest in magnesium tablets as though sleep mostly ok feel a bit sweaty and if so wake early feels like heart is racing.

[yvonneu in reply to Av42]

I have had my six loading shots (after having to change doctors etc which most on here know of the struggle I had to be taken seriously !) And look and feel much more human with more energy and a definite spring on my step. I do get hot flushes (Only rarely had those when I was going through the menopause!) ...but nothing else I can see as a side effect. I go back in September for a blood test and take it from there then.

Onwards and upwards, my friends. X

[Av42 in reply to yvonneu]

All good then. Thanks positive feedback is helping.

[Sleepybunny]

Hi,

Some books about B12 deficiency and PA

1) What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper.

Up to date with UK B12 guidelines.

2) Living with Pernicious Anaemia and Vitamin b12 Deficiency by Martyn Hooper

Has several case studies.

3) "Could It Be b12" by Sally Pacholok and JJ, Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

[Av42 in reply to Sleepybunny]

Thanks will order copies first thing tomorrow.

[Sleepybunny]

Hi again,

"I have just had loading doses "

Do you have any neurological symptoms?

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Are you aware that in UK, a person with PA or other cause of B12 deficiency who has neurological symptoms should have loading doses, one every other day for as long as symptoms get better then it's an injection every 2 months.

Patterns of treatment in other countries vary from what is given in UK.

How many loading injections did you get?

"I have had loading doses and have to wait until October until next one."

Standard UK B12 treatment for those without neuro symptoms is 6 loading injections over 2 weeks followed by one every 3 months.

You mention waiting till October which makes me suspect that you are on standard UK B12 treatment regime. Make sure your GP knows about any neuro symptoms you have.

If you are on incorrect treatment regime it may mean your symptoms do not improve or could even deteriorate further.

UK B12 treatment info can be found in

1) BNF British National Formulary Chapter 9 Section 1.2

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

cks.nice.org.uk/anaemia-b12...

2) BSH Cobalamin and Folate Guidelines, a quarter through document.

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

Link about writing letters to GPs about b12 deficiency.

Point 1 is about undertreatment of B12 deficiency with neuro symptoms.

b12deficiency.info/b12-writ...

"I am yet to meet someone to ask if you really do feel better"

Some people on forum join PAS (Pernicious Anaemia Society).

pernicious-anaemia-society....

Members can access details of PAS support groups in UK.

pernicious-anaemia-society....

These local PAS support groups can be a great way to meet people who understand what it is like to live with PA and B12 deficiency.

B12 blogs

Martyn Hooper's blog about PA and B12 issues

martynhooper.com/

There may be stories on the blog that are relevant to you.

There is also an interesting blog about B12 issues on "B12 deficiency Info" website.

[Av42 in reply to Sleepybunny]

I don't have any neurological symptoms. I must admit yesterday I went for a four hour walk and thought I may pay for it today but so far so good maybe I'm turning a corner . Have been very spotty and still am and also sweaty but think some of sweating is due to the fear of feeling rubbish. Can't say I feel full of energy but have some . Don't feel like the injections have been killing me now. Hopefully will feel like this now and hope others do too .

[evilellie in reply to Av42]

I got loads of spots after the loading doses which took ages to go away. I think it's fairly common as a side effect. As for me, my pernicious anaemia came on quite quickly (I think it was triggered by nitrous oxide in childbirth), so maybe I am not the usual case of a gradual decline, but I started to feel way better halfway through the loading doses, but unfortunately went way downhill waiting three months for the next injection after that, so I had to buy some mouth spray and learn to self-inject, so I now do one injection per month. I'm quite young and active, so I think it is obvious that one per three months would never be enough. I feel mostly as I did before having pernicious anaemia, so hopefully that makes you feel better!

[Av42 in reply to evilellie]

Thanks for reply I have had a good few days just feel a bit funny in my head occasionally and sweating in morning . I'm forty two with a 11 year old and today I've been swinging on swings and climbing in woods and don't want to get to the point where I'm saying I can't do It I'm too tired . Refusing to give in😊Glad it's working for you too!

[Av42 in reply to Av42]

A quick question what was your b12 level at time of injections and how was you feeling when diagnosed.

[evilellie in reply to Av42]

Hi, don't know the level was just told it was low, and they did the intrinsic factor antibodies test to confirm it was due to pernicious anaemia. I was having splitting headaches, hearing my heartbeat on my head (there's a medical name for it), fainting and physically unable to stay awake for more than about an hour at a time. I honestly felt like my body was just switching itself off. It all escalated quite quickly to that point which I think is unusual so maybe that explains why I started feeling better quite quickly too.

[Av42]

Thanks for getting back to me your symptoms sound awful . I'm a bit confused as doctor just told me I had pa and would need injections for rest of my life not going to argue with it as feeling better everyday at moment. My diet had been so rubbish for years that I can't help thinking more diet related. Glad you've been really feeling the benefits as When you're a mum it's the fear of not being an active one that terrifies me and as you have a child or children too . Thought you must get that . Think my selfish desire to be slim has maybe destroyed my body. Haven't had an eating disorder as such but just been too controlled but eating chocolate instead of good stuff. Hadn't eaten a banana for years can't stand the things now eat at least one a day and porridge is vile baby food and yes have that too! Hope you continue to improve and thanks for getting back to me .

[evilellie in reply to Av42]

Cool no worries. My grandma had pernicious anaemia so I would probably have got it anyway eventually but I think nitrous oxide brought it on earlier. I've been vegetarian since I was 15 but I don't think diet necessarily has any bearing on it. I've also had periods of not eating properly but not in recent years as doing a lot of sport has kind of forced me to eat properly or be tired from that too. I definitely want to stay active to enjoy sport with my son as he gets older (he's only two and a half now). I'm really into climbing and have quite a long cycle commute so I need to for my both work and free time fun as well.

[Av42 in reply to evilellie]

Thanks again for reply. Your child is very young so you need your energy! I'd never heard of b12 until this and gp didn't seem that clued up either.