Hi guys hoping someone will be able to explain whats happened please. So diagnosed with ra in March, started on hydroxy along with preds 25g a day for a week,reducing to 20 the next week etc until eventually off them altogether. This I did over a number of wks but 2/3 dys after no preds had pains everywhere & by the eveningdecided to put myself back on preds as couldn`t stand the pain, Saw dr next day he said ok do the same again with reducing dose, So I did & am now down to 5g a day. Then when I`d been on the hydroxy for 3 mths doc said maybe they`re not working might have to think about biologics. I asked to give them a further 3mths to make sure, he said ok. I have seen a big difference so am happy to keep going with them along with 1 a day 5g pred. I had a blood test on 30/09 which dr said was all good All this was done privately but decided to go under our health authority as if things change I wouldn`t be able to keep going private. Went to health centre explained everything he said fine no problem but we,ll do our own blood tests, had that on 05/10, went to see him for results 3 dys ago 14/10 & he told me my B12 levels are dangerously low & he started me on injections straight away. Still in shock to be honest don`t know what to think how on earth did they get so low in such a short time?? I knew I was tired obviously but assumed it was th ra. Sorry its so long post, appreciate thoughts tho thxs 
Very Low B12 levels: Hi guys hoping someone will be... - NRAS
Very Low B12 levels
Vitamin B12 takes a long time to get depleted, I would have thought the private lab didn't test for it ?
Do you know what tests the private lab did ? I'd presume you would have been anaemic too due to low B12 ?
Hi, Marionfromhappy days sorry no idea what tests were done I think full bloods but don`t really know. I did tell him although I felt loads better I was still tired. I do remeber when I was 1st diagnosed(privately) I had hifg ferretin but he said it was the ra preventing my body using the iron. The very 1st doctor I went to did blood test & said I was negative for ra :(yes he really said that) but I was anaemic so did a colonopsy, said suspected a bleed somewhere which was negative & all ok, needless to say never went back to him again!
If they did your ferritin would have though logical to do your b12 but with private labs maybe cost was an issue and didn't do it ?
In my initial blood screens I had a blood test for something called anti-parietal cell antibodies, if positive (mine was) its an autoimmune disease where your body destroys these parietal cells in your stomach and you can't absorb vitamin B12 and then you get something called pernicious anaemia. Maybe worth asking if you've had these tests? Great thing is it's easily treated with b12 injections.
I would ask your nurse or Dr if you are worried, glad its been picked up now, hope your levels get back to normal ASAP
Thanks for this info Marionfromhappydays. I don`t think cost was an issue, I had 4 altogether from that doc & it was never mentioned. I was told all were good. Glad the injections sorted you out, hope they do me too & I`ll get rid of this tiredness
I just had to say that Every time I was reading all your kind replies every time I read Marion fromHappy days it just made me smile so much 😂 what a great name ! Gosh I loved that show.
Have you had a diagnosis as why they are low as Pernicous Aenemia must be looked for before whacking the jab in and most GP's won't do the jab unless you have that diagnosis. I'd urge you to talk over with GP as PA is lifelong and the jabs should be a loading dose over a few weeks then monthly as required usually every thre but sometimes more frequently. If your vegan or vegetarian low B12 is sometimes more common but a one off jab is going to make you feel better for a while but not for long and you need to know why you needed it.
No he just told me last Thursday it was dangerously low. Its not one injectiom tho sorry I should have explained better,I`ve to go back for for the next 3 weeks for one jab then once a month & he sai he`ll see me in January & hopes it`ll be soon I see the rheumatologist as he`s referred me! T o be honest I got the feeling he wanted me gone asap. Gave me all my meds for 3 mths too. I`ll try see another dr but its not easy at the moment. Thanks for your help. Oh I`m not vegan/veggie I`m usually very good with diet but bit hit & miss lately. oh and my mum & sister had pernicious anaemia my sister also had re. I have a goitre too but I keep forgetting & forgot to tell dr, !!!
I think you need to ask some questions and put your mind at rest. x
Hi medway lady yes I think I do. I`m hoping the injections will give me so,e energy & my brain gets back to normal to ask them lol. I`ve written a few things down & I`ll add to it as & when I remember. Thanks for your help.
I don’t think B12 is routinely part of full bloods, and if iron was high people are less likely to think that B12 might be low and consider testing for it.
Also extremely odd to go from hydroxychloroquine - which is the mildest of all the RA drugs - straight to biologics. In general biologics can’t be prescribed privately (unless you are prepared to pay the £700/month bill) but only by NHS rheumatologists. What with that, and missing the low B12, I would not be too happy with this private rheumatologist.
Hi helixhelix sorry no the private dr was private & he consulted with the rheumatologist first before prescribing me. I`m in Gibraltar & we only have a rheumy locum who visits us from uk usually, but only every couple of months os so & now add covid into it thats why I first went private as I knew I`d get a diagnosis quicker. Yes I`m wondering why it hasn`t shown up before now & the last private bloods was only a few wks before the health centre one, very strange! Apparently because I have asthma the hydoxy is safest dmard & I`m not suitable for the others. I don`t think I know anything anymore. Thanks for your help.
Doesn’t sound ideal…..general doctors often don’t know that much about auto-immune conditions like RA. But at least he/she consulted one,
Keep notes of everything - your tests, treatments and how you feel. That will be useful once you finally get to talk to a rheumy
Hi helixhelix no not at all but at least I`ll get to see the rheumy this yr hopefully Yes I`ll keep notes & maybe this tiredness will go away with injections I`m really fed up with it. Thank you for your help.
Are you in the Uk?You seem to be changing doctors very often with no continuity of care.
Hi agedcrone, no I`m in Gibraltar. I went privately last march thats when I was first diagnosed with ra. Then in sept. I went back to our health centre (we have a health centre & hospital by Gibraltar health authority) to let them know whatI`d been diagnosed with & they`ll be looking after me now. If anything were to change with my meds I wouldn`t be able to afford going privately. Like in UK, it can take time to get seen by nhs & a diagnosis so people opt to go private then go back to nhs with results and treatment they have been given. The rheumy the private dr consulted with actually works in uk & comes here to our hospital as a locum as we don`t have full time rhuemy only locums who visit. All our dr are trained & qualified in uk but we have some spanish ones too & they equivilant qualifications.
Agree with you it’s not usual to go from a starter dmard like Hydroxy to a biologic. I see that Chrt isn’t in the UK where you have to satisfy the funding body, and under NICE guidelines you are required to have failed two dmards including Methotrexate before you are considered for biologics.
Yes, especially as I’ve read that prescription meds have to be paid for in Gibralter…..a bit of an expensive hurdle if you are on biologics 🙀😱
Very much so! 😳
Hi helixhelix I`m exempt as a pensioner, but for others they r subsidised as in the uk but of course if u go private you pay.
Hi neonkittie17 our health authority works similar to uk, gp`s are not allowed to precribe dmards or biologice without consulting specialists or referring to them first. What they do tho is if no specialists available in Gibraltar they have visiting ones either from uk or spain, if further treatments is needed then patients are sent to either uk or spain & cost is paid by gibraltar health authority regardless of age. My late husband had macular disease & he was sent to moorfields for treatment with lucentis which wasn`t available on nhs then, they decide which treatments they fund which was great for my hubby.
That seems a unique way of doing things there in Gibraltar but glad there are other options of visiting docs and travelling to the U.K. for treatment, etc and hope things work out for you and you find a biologic/med that will work for your RA and not affect your asthma. 🙏🏻💗
Hi neon kittie17 Yes it is certainly unique lol but it works mostly, not perfect but what is!. I think I`ve worked it out, if vitB12 isn`t routinely checked for I can see how it`s not been asked for especially as I`ve always said my diet is very healthy & varied, I`m a qualified chef so have cooked most of my life & have a good knowledge of nutition. Then the privated dr I saw used to work for our health authority for yrs so is well know. He also told me the rheumy he consulted with also visits our hospital from UK. Then the dr I saw at our health clinic knows the private dr so I`m thinking he may have been a bit concerned that the private hadn`t asked for them to be done because for sure they all know each other as it,s like a village only 30,000 people??? Anyway just a theory cos these days I don`t know anything anymore!! Thanks you I feel the hydoxy is working not sure if its working enough tho.
Something similar happened to me. I didn’t know they were low. When my RA consultant asked if I was on B12 injections I said no. He wasn’t happy and said my GP knew my levels were low. I did eventually get a regular injection. Mine was low because of the medication I was taking. It corrected itself once I started on biologics.
You can take B12 & other B vitamins in tablet form on a regular basis. It is a fact, unfortunately, that some doctors don't know what they are doing. Have you had Vit D levels evaluated, low Vit D can cause leg & foot pain & fatigue?
Am on Mtx injections and its fairly common to have low B12 levels with the RA. Fatigue dizziness and sore mouth etc.I started taking B12 supplements a while back now and my energy levels are alot better than they were, the sore mouth is rare and i haven't had any dizzy spells for a long time.
I think B12 is a must when we have RA.
I take B6 & B12 supplements. Took a while but do feel better for it x
Oh that’s strange as I have felt very tired and had a similar thing a few months ago which they said it was fie to lo folic , when I was on MTX I had to take folic acid , this should be monitored when on these strong drugs . I was going to ring GP to say how tired I’m feeling. However, you can’t even get an appointment, I give up now with GP plus can’t get past the receptionist.Good luck 🤞
Hello Chrt. You mention (almost as an aside) you have a goitre: do put that on your list of things to mention to your doc. It might well be of relevance. Best wishes…I hope you have some satisfactory answers soon and begin to have an improvement in your health.
Hi callme sunny, yes thank you I will, I do forget about it., because I was only told the day I was diagnosed with ra, the dr pointed it out I never knew I had it till then! It doesn`t hurt or bother me at all so thats probably why I forget about it.
If it’s any help to keep in mind, B12 deficiency can occur with celiac disease (as can iron deficiency anemia). As someone mentioned, with pernicious anemia, a patient has a hard time or can’t absorb B12 taken orally, so injections are important. I believe that tannins in the diet have the potential to make it harder to absorb dietary B12 as well. Long term B12 deficiency can lead to irreversible neurological issues, so it seems like a good idea to keep levels within a normal range. Best wishes as you try to sort everything out.
Long term use of drugs like omeprazole, lansoprazole etc can deplete your b12. I was prescribed them for years as it was the only way I could tolerate anti inflammatory meds. It was by chance that I read an article about the symptoms from low b12 (most of which I'd put down to my ra) that I pushed for the blood test, low and behold my levels were low, fortunately I was able to correct them with supplements over time and by stopping the daily lansoprazole. Despite my previously mentioning the concerning symptoms to my rheumatologist and gp neither of them ever thought to check my b12 levels. You really have to be pushy about these things nowadays and not be fobbed off. Make sure you ask all the questions other people have suggested, get the facts from your gp, it is important to know why your b12 is low. Good luck.
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