b12 injections

[mary4444]

hi everyone hope u all doing ok and not in to much pain just wondered is there anyone with ra who has been on b12 injections just wondering do they work be gratefull for any infomation mary xx

[medway-lady]

Yes I do and have Pernicous Anemia. The RA consultant found it and my blood was then reviewed by a Haemotologist as it appears not but I do. I'd had tablets for a couple of months but then had embolisms and ended up in A&E and lucky to live. I've had injections now for a few years they do definately work. The amount is just in a syringe and done by the surgery nurse. It does hurt but a couple of days later it kicks in and if you don't have them you die. Hence the term pernicous but its rare these days although insurance companies do load travel insurance mine is by £280 but it has to be bought. My GP said its rare side of Auto Immune disease and to be honest I don't even think about it now. Hope that helps. It pink by the way and given in the arm. Feels like lead going in. But really worth having. Don't buy B12 tablets as OTC its illegal to sell in the amount that is needed to do anything medically. Your GP should be able to help as will the RA consultant as it'll show up in a full blood test.

[mary4444 in reply to medway-lady]

thank u medway lady for your answer i start injections 3 next week then 3 week after then doc said i will be on them indefinetly [ spelt that wrong[ is it anything to do with feeling so tired i just put that down to ra doc is phoning rhumy today as he thinks they need to see me i have got bad flare at the moment has the injections given u any more energy are there all different types of anemia i been anemic for years but never given injections before mary xx ty

[medway-lady in reply to mary4444]

Yup thats the loading dose then very 3 months or less, loads more energy its like the fog lifts like magic but be patient it takes a few weeks. I don't know about different types, sorry.x

[mary4444 in reply to medway-lady]

thank u i wait till monday i remember about 4 years ago i had a iron infusion that was was good it really picked me up i will ask them what type of anemia i got ty mary xx

[DelicateInput in reply to medway-lady]

How do you buy them over the counter if it is illegal? Who sells them?

[medway-lady in reply to DelicateInput]

No idea mine are on prescription. I'd not buy something like this on the internet thats injected. Sound very dangerous.

[DelicateInput in reply to medway-lady]

So it's the internet. I would not normally buy anything on the internet. I bought some products that I used regularly once and they were almost out of date and I suspect had not been stored correctly. I normally get them direct from the manufacturer.

I am going to have to get Omeprazole off the internet though as it is too expensive buy from Boots in the dose I need, and I cannot get a GP appt. I doubt the GP will give them anyway as they did not before, when they should have done. No choice, really.

[medway-lady in reply to DelicateInput]

I'm pretty sure it is dangerous to have too much Vit B12 so do strongly urge you to get a proper blood test and seek proper medical advice before self administering something off the internet. B12 also has to be kept properly and our surgery does that. I definitely would not self administer B12 and wonder if it affects the heart so please talk to your GP.

[Nickijk73]

Hi mary4444

I too have perinocious anaemia,and after 3 loading doses in a week,I've been having them in the arm(they go into your muscle,which is why they sting a bit,but nothing major) every 3 months after that,and you're left with a lovely little bruise as a souvenir 😝 As medway-lady says,it's got to the point where I don't even think about it now,it's just another appointment that needs to be done,although I didn't have it explained to me in any detail,I only found out what the condition was by looking online when I got home after the rheumy had 'mentioned' it.i also got told that no amount of OTC supplements would be absorbed into my bloodstream to cover the amount ud need.so there was no other way around having the injections

Nicki x

[mary4444 in reply to Nickijk73]

hello nicki so u got it as well and yes nothing was explained to me either i am a lot wiser now thats why i just love this site always someone there to help otherwise u just end up worrying yourself sick hows minnie the minx dare i ask whats she been up to and all the beautiful cats i do hope u feeling a lot better now nicki after your fall mary xx

[Nickijk73 in reply to mary4444]

Hi mary4444

Yep,this site has been a remarkable source of wealth and knowledge when it comes to asking about anything to do with our conditions - j just can't believe I only found it by chance a few months ago.... I certainly could've done with it when I was going through the diagnosis process and the hell that brings with it!!

Minnie's being a complete little minx - she's the star pupil at her puppy class,but at home she's trying to push the boundaries with both me and the cats... I'm hoping the cats will give her what for so she learns her place... they did give her little taps when she was younger,but she's just 16wks now, and for some reason,even though they could knock her flying with the size of their paws,they're letting her get away with murder?! They obviously just think she's a baby still,and no threat to them😻😻😻 although,Thomas has very much taken a liking to the bed I bought for her but she won't use.... even though he's so big he hangs over every side,he's comfy,and it's the first place we look for him now 😝

I'm still having a bit of a nightmare flare from my fall the other week - I just can't stay awake,so much so that I haven't driven for all of last week(mum took me to puppy classes so I didn't miss another) and I even fell asleep in the middle of a black sabbath gig at the o2 on tues... we were about 3/4 rows away from the stage,we could have been on there with them😝 The only reason I woke up is because I'd dropped a cup of water down my front when I'd passed out!! That's when you know you're ill,when you're practically onstage with one of the oldest and loudest rock bands and you pass out and you're only drinking water!! Luckily I've got my nurse clinic on wed,so I've got a huge list of questions to ask her(I'd forgot them otherwise😂).

How's you? Everything ok? And how's the gorgeous zebedee? Xx

[mary4444 in reply to Nickijk73]

niicky sorry to hear u still not recovered from that bad fall down the stairs dont forget to write post when u see nurse on wed i couldnt help smiling about minnie the minx shes only a baby she will learn they all try it on lol animals are so funny what would we do without them zebedee coming today i still got massive flare up but hes quite content to sit with me also got the garden pouring of rain here at the moment anyway take care and dont forget to take your list on wednesday mary xx

[PFKAAde in reply to mary4444]

B12 is water soluble so any excess is excreted when you go for a wee!

Fat soluble vitamins are the ones you need to be careful about.

A

[mary4444 in reply to PFKAAde]

pfkaade who takes fatsolubleand what are they used for was this message for me mary xx

[PFKAAde in reply to mary4444]

Sorry it was meant as a response to a post above saying that too much b12 is dangerous. Not sure why it posted here, could've sworn I pressed reply to a different post.

Fat soluble vitamins are just vitamins that we store in our fat cells rather than in water within our bodies. Vitamin d is an example and is why you can have too much vit d.

[Kerina]

Mary4444

Hope to see you running about soon 👍 Xx

[dwsurquhart]

My GP was giving me B12 injections and ferritin injections. Was almost poisoned due to ferritin level going sky high. B12 did not help or make my RA any worse.

[ArcherDee]

Hi Mary444

I've had pernicious anaemia long before I was diagnosed with RA. It's your body's inability to process B12 from foods. It's the b12 that make new red blood cells,

It is indeed related to why you feel very tired and worn out. I had one weekly when I was first diagnosed and then went to three monthly. You definitely feel it when your due your injection .. I get tired and listless and everything is a huge effort!

If left untreated it can cause dementia so I ensure I never miss an injection. (Something to do with renewing brain cells..- I find I get foggy brain when I am due an injection!)

It hurts for a few seconds and then just goes to a dull throb for an hour or so.. it feels like when you were a kid and got a dead arm from someone punching it!

The tablets will do nothing for you, as your body can't process it, you'll just wee it straight out!! It has to be injected into the muscle..

I hope this helps

[mary4444 in reply to ArcherDee]

thank u archerdee that was very interesting they didnt say i had pernicious anaemia doctor said my anaemia was really low and so was my b12 and he was starting me on 6 b12 injections 3 next week 3 week after and then i will be having 1 injection permanetly in otherwords will be staying on it are u on injections all the time they dont give much information out thank goodness for this site mary xx ty

[ArcherDee in reply to mary4444]

Yeah I'm in them permanently. Every 12 weeks now.

I'm trying to remember, I may have had a few in one week initially but it was about ten years ago I started so I vent fully remember!

I was only diagnosed with RA last July

[mary4444 in reply to ArcherDee]

do u know archerdee we dont know whats around the corner sorry to hear u were diagnosed with ra last july so u quite new to it i hope u coping well and manage to get medication that suits u i have ra about 9 years this been a very cold winter and everyone on here been suffering roll on summer mary xx

[Skipper55]

Hi Mary

Yes I have been due to the removal of the large and small bowel up to the illium ( however it is splet ) the area where the vitamins are absorbed I was on the injections for 2 years , they are powerful straight after the injection ie you know you had an injection of sorts but i found then of little benefit I have not had any for 15 years and there are better alternatives ie by script for a disolable multi vitamin . I cannot take these at this time as a heart tablet I am on does not allow sodium and these tablets that dissolve have high levels of mag sod and other essential elements. I wish i could find them to give you the name but your GP would know them as they cannot be bought over the counter. I found them to be far better tan the B12 injections

[Gigi71]

Hi Mary. I have been on b12 injections for a few years now. I go to the surgery every 3 month, I was contantly being prescribe iron tablets and they made me feel awful. A blood test showed I had a b12 and folate defincancy, I also have Hashimoto's so this is quite common to have this. If you have a look on Thyroid uk it crops up frequently on there. Has really helped me. Good luck Hugs X

[mary4444 in reply to Gigi71]

thank u gigi 71 i have been so worried about all this as dont know enough about it i will be having the six injections starting monday then it will be same as u every 3 months i also cant take iron tablets they make me vomit never heard of hashimotos will look that up on google have got under active thyroid i am a vegertarian wondered if that has caused it when i read things on this site the things some poor people are going through i feel ashamed this site is brilliant and so helpfull dont get the support anywhere else i feel so much better now as i know what to expect thank u gigi and all those that answered hope u having a good day and not to much pain mary xx

[Gigi71 in reply to mary4444]

Hi Mary. Hashimoto's is when you own body distroys your thyroid gland, so you have an under active thyroid. Most people with an under active thyroid also have problems with low ferritin levels. I haven't had to take iron tabs since going on b12. Sometimes it shows a bit under but I just up my greens and I eat fish, especially sardines salmon etc. I do eat meat. I know when my injection is due, feel very tired. Have just been for a blood test including a thyroid test. I joined the Thyroid UK site but only read the posts for info. Don't worry Mary I'm sure you will be fine and a lot less tired. Takes a while like everything to work. Fingers crossed for you. Hugs G X

[mary4444 in reply to Gigi71]

hi Gigi yes i looked up hashimotos very interesting i had never heard of that one before is it the same as when ra attacks our body autoimmune disease i can tolerate pain to a certain degree but the tiredness is another story lol cant wait till i get started on monday i got a new doctor who has sorted this out been like it for long time i was buying b12 over the counter but as u mentioned they done nothing the hosp told me to buy them haha live and learn thank u for all the info hope u having a good day and that your tests are ok mary xx

[Gigi71]

Thank you Mary. Yes a good day, went out to lunch with my amazing neighbour. She has secondary pancreatic cancer and is still undergoing chemo, hard to get her in, she belongs to so many clubs and is always out somewhere. She is 83 and so cheerful. She had another PET scan yesterday, her 9th. I drove her back up to our town so she could get some cakes for her craft group coming over to her house tomorrow. She instisted on getting the bus home. You are right about these forums, are so helpful and lovely warm people. Taking my youngest grandson to rugby training to night, luckily don't have to stay around..too cold for me. Hope your day is going well and you are enjoying your day with Zebedee. Take care xx

[mary4444 in reply to Gigi71]

hope u have a lovely time at the rugby tonight wrap up freezing out there been reading some of the post u have been through a lot of hard times i also got osteoporosis and i take same pill as u i fractured my t7 top of my back doing gardening lol but still walking about also got a hh but dont get any probs from that at the moment didnt have zebedee today he comes mon tues and thursday mary xx

[Gigi71 in reply to mary4444]

Hi Mary. I only picked him up and dropped him off. Too cold for me to stay. My son was picking him up after training, so didn't have to go out again. I saw you have osteoporosis, sorry to hear you had a fracture, that sounded so painful, is that how they found out ? I have had 3 fractures in my ankles, these were more recent. I have been on treatment for about 10 years, but not working, mainly because of long term steroid use. At my review last month, the rheumy nurse was putting me forward for another drug. An injection every day for 2 years, it's expensive so will see. Not so sure I'm that keen. Will be a tie as has to refrigerated and I do go away quite a bit. We do seem to have. similar problems, you have an HH too, I have lansoprazol, so don't get the acid reflux I used to. Glad to hear it doesn't trouble you too much. Have had to learn to live alongside RA, as there always seems something else popping because of it or the meds. You can always pm me Mary. Take good care of yourself. Have a good day with Zebedee tomorrow. Hugs G X

,

[mary4444 in reply to Gigi71]

morning Gigi about the osteoporosis they found that when i had dexa scan was put on aldronic acid pills but they didnt agree with me so i was offered aldronic acid infusion that was very good i got no side effects u have it once a year they do it on hospital ward only there a few hours then u go home i have had three of them on the last one just before xmas i got a discharge sheet so i assume thats all we get but i would highly recommend it @ ra yes thats something else i find medication very hard to take stopped it all last oct but now back with a vengence my own fault mary xx makes u realize how good the drugs are

[Gigi71 in reply to mary4444]

Hi Mary. Goodness you were brave to stop the meds, can't imagine doing that, would be great though...hope they found alternatives for you to try. It was actually 15 years ago was dx with osteoporosis, time goes so quick. First took Fosamax(Alendronate) always got on my nerves because you had to get up and not have a cup of tea for half an hour after. Took that far too long went on to Strontium ranelate they really upset my stomach so on to Denosumab, inj. Every 6 months for 3 years finished October 2015 then nothing, sort of got forgotten when I saw the rheumy last year insisted on a Dexa scan, she also put me on Alendronate. As the results were low they have put me forward for Forteo. As I am getting older and still on pred I worry about broken bones as my balance not good. I also am on Vit D and I buy Vit K2 as recommended on the bone forum. Don't let them leave you either Mary. Sorry you are flaring Mary, hope you are able to rest and keep warm. Gets cold down by the coast. Take care, good luck with the Vit b. Xxx

[mary4444 in reply to Gigi71]

hi gigi yes i stopped all meds except tramadol but all back with a vengence doctor phoning rhumy to say they need to see me before my due date in april so waiting for a letter i wouldnt recomend it to anyone stupid thing to do i was on remission up to around xmas time yes i take vitamin d will look into vit k2 been really cold today feel so tired cant wait to get started on b12 where do they inject it into hope u doing ok and rest when needed i am sure this cold making every one worse roll on summer thats what we need take care mary xx

[Gigi71 in reply to mary4444]

Oh dear, you won't make the same mistake again. Hopefully you will been seen earlier. My next rheumy appointment is April. She does sometime ring me though. Still haven't had my results for the ultrasound on my liver, I do apparently have cysts, so I'm sure it's nothing to worry about. Her letters take ages to get to me and my GP. He didn't get the last one with the X-ray. Picked my youngest grandson up from school and fed him. My son came and picked him up. Missed a phone message from the falls clinic, only saw it about half hour ago, so will have to ring in the morning. A physio came out to my home last week. I got lost on the system from last November, should have had classes before now. Offered a place next week. I get my Vit K 2 from Healthspan on line, it's expensive about £16 for 2 months, hope it's working.lol.. The B 12 is given into the top of your arm. It does sting though. This cold is horrible, can't wait for the spring. Hugs G X

[mary4444 in reply to Gigi71]

Gigi u not having much luck at the moment hope u soon get results through for your ultrasound trouble is the hospitals so short of staff and money its a real shame the way the nhs is heading the doctors and nurses really have there work cut out for them. the falls clinic sounds a good idea i would imagine thats to learn how to keep balance another fall is the last thing u want. good luck with the k2 anything is worth a try once had the b12 injection will be ok its just the unknown haha keep warm and sooner this cold snap is over the better take care ty for letting me know where the injection goes mary xx