Bad News

[Angie2212]

Hi Everyone.

I haven't posted for a while as I've been doing great....so I thought!

4 weekly bloods have just shown up that I have extreme B12 deficiency and very low folic.

I've to get infusions 3 times a week for 2 weeks to boost it quickly before going onto 3 monthly ones.

I'm covered in bruises and today my arm feels like it is broken at the elbow. I'm guessing its a bad RA flare.

I'm so fed up as the Sulfasalasine has been working great.

I'm completely exhausted come a Friday after working all week and only sleeping around 3 hrs a night, which is not really anything new.

I will be in touch with my RA nurse first thing on Monday for some advice and hopefully a wee steroid injection to help this horrific pain in my arm.

How is it possible to be so controlled for months and then all this at once?

#feelingsorryformyself

Angela

[Nessa28]

💐🤗

[Hidden]

Hi Angie2212, I also had a seriously low B12 deficiency, my GP said 'he'd never seen it so low in anyone before'. I had to have 6 shots of B12 over 2wks. That was in May, it made a difference & perked me up. But also like you i'm going to have to have it every 3mnths, although now I am starting to get the same feelings again, fatigue, burning sensations in my feet, unsteadiness, etc etc.

We try our best of looking after ourselves,

but there's always something that crops up, I just put up with it.

Hope your feeling slightly better soon.

Ruth 😊

[Gigi71]

Sorry to hear how bad you are feeling, it will make a lot of difference when your b12 levels are controlled, I have been on 3 monthly injections for a few years now. I do notice a week or two before my injection is due, how beyond tired I feel. I also have Hasimoto's and this crops up continually on the Thyroid forum. I also found it helpful to read the NHS site on Google. I was also found to be low on folic acid too. Having erosive RA for many years I have suffered from anaemia and used to have to regularly take iron tabs and all the joys from that. It seems to have helped with that too. Good luck. X

[Doodleangel]

Oh no, why do we all have to go through this. Hope everything levels out soon 🙃

[Yogi-bear123]

I had same thing happen with b12 def. benepali stopped working... however the numbness in my knees and toes came back and severe fatigue also improved after b12 jabs . On washout now prior to hopefully getting onto next drug. Think it’s all about balance and if one thing is not right seems to have a knock on effect..... onward ho.... bloody horrible disease☹️

[widgie]

Vitamin B12 deficiency can be due to another auto-immune condition - pernicious anaemia. The B12 injections will have to be continued every 2-3 months to keep it under control and yes, it can make you feel very tired. I probably have 3 reasonable weeks ( ie I am able to do some tasks for a shortish time each day) and then revert to watching a lot of tv for the subsequent weeks. I don't really know whether my extreme tiredness is due to the treatment for my initial autoimmune condition or the PA!

[Angie2212]

Thank you all for such great support.

I slept for 12hrs last night, but I did have to take a sleeping pill to do so, but Im feeling a tad recharged today apart from this horrid pain in my arm and elbow.

A weekend of relaxing for me xx

[denden in reply to Angie2212]

Hi Angie, how are you feeling today?

[Angie2212 in reply to denden]

Good Morning.

Im feeling much better now thank you.

I was given an injection into my elbow that helped almost instantly thankfully.

Yesterday I started on b12 injections. 3 this week and 3 next week. After that 3 monthly. I was told I shall be on them for life though.

Im ok with that. Anything to make a difference.

All I need to sort now is how to sleep more than 2 hours a night!

This disease is really hitting home with me now, but I am as always trying to stay upbeat and positive. Life is too precious to dwell on the negative.

Hope you are well xx

[Juliachoo]

Hi Angie, I’m on the Sulfasalazine plus Methotrexate & all of a sudden my hb & ferritin levels dropped like a stone! Don’t think they dropped as bad as yours as 6 weeks on ferrous sulphate as well as 6 days a week on folic acid have brought them back up...they said mine was probably caused by acute bronchitis in March.. I have just been on holiday & with the hot weather felt great when we got back..today however I have painful fingers.. can’t win can you with this rotten RA...hope you feel better soon, good luck with the infusions, I’m retired & know it must be so hard to continue working while coping with everything this disease throws at you. Xx😘

[medway-lady]

Have you been tested for Pernicous Aenemia ? as this is nothing to worry about the jabs hurt but work and to be honest it makes no difference to life. If your still feeling tired than thay can be closer together mine are 10 weeks and that about it really. No issues at all so don't worry its just the loading dose and infact if its PE its nothing to do with the meds its an auto immune condition like any other. Just talk to your GP and make sure you get the test for PE.

[Angie2212]

The nurse suggested it was PA. I used to get the jabs several years ago. I was only lasting 6 weeks though. Eventually I felt good and stopped having them. No-one told me at the time I should be on them for life.

I just cant get my head around how well I have been and now its all falling apart. Im due to go to Croatia in 4 weeks for my 1st wedding anniversary and praying for some relief.

Ive started bruising from my elbow to my wrist today and can hardly move my right arm. Even holding a cup is so painful and my legs feel like ive ran a marathon. Ive never had anything quite so bad since being diagnosed with RA and now im struggling with the realisation that it may always be like this now.

Im a positive person normally, but I do confess to feeling rather deflated by this horrible disease.

Praying my Rheumatologist has some words of wisdom for me.

Xx