Although I have made a nearly complete recovery from last year's myositis flare, my overall condition has worsened. Most especially, the "chronic fatigue"/"Fibromyalgia" symptoms have now rendered me virtually housebound and feeling unwell 24/7.
Although I emailed him last month to explain how desperate things had become, my rheumy decided that my recent review would be best handled by a registrar I'd never met. He advised continuing with the same management plan that has gotten me to this point - 'and review in 6 months'. At the current rate, I will be pushing up the daisies in 6 months, so desperate measures were called for.
Luckily, I have the support of this forum, and my GP, and so this afternoon, I am heading to the surgery for the first of a course of B12 injections. I have completely normal B12 and folate serology, but as she says, "We are all out of other ideas".
I'm so grateful to Foggyme for helping persuade her to give this a try; other outlandish ideas are likely to follow. I will post again when able ! x
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my B12 levels are good too and the vit D, I didn't know you could still have B12 if the bloods were good. At the moment I am literally showering in deep heat gel as I can only tolerate paracetamol. So I apologise in advance to anyone I might meet for the pong. As you say desperate measures. good luck
Thanks. Apparently it is possible to have bloods which have normal serum B12 and folate but still be B12 deficient. My GP spoke with haematology consultant to check this out. Thier advice was that although I am unlikely to be deficient, the additional testing required to be sure is so elaborate, and B12 injections generally such low risk that in the circumstances a "therapeutic trial" of injections would be reasonable. Hope that deep heat helps a bit x
Hi suzannah16...I've posted a couple of links in my reply to whisperit...in case you need more information about the potential for B12 deficiency in the presence of apparently 'normal' B12 levels 😉👍
I'm adding a couple of links in case anyone reads your post and wants further information 😉.
B12 definicieny can be more tricky than most GP's realise and symptoms of defiency can be present even if serum or active B12 levels are apparently 'normal' (especially if oral B12d supplements have been taken before any testing).
archive.is/hbPHE (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections - even in the presence of normal serum B12 levels)
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
As to other outlandish ideas...yay to that if they work...
All the best. Though under the circumstances, I might have staged a sit-in at the rheumy appt, refusing to leave until I had seen the boss. They'd have looked a bit silly calling security one feels. And there would be a complaint winging its way to someone senior.
Yes, when I told my next door neighbour (a former GP), she says that is exactly what she has done in the past. It's one of those situations where our vulnerability counts against us, isn't it? I was feeling half-dead after getting up early and travelling for nearly an hour to get there, so the energy needed to stage a protest was just not available. I'm gathering myself to write a pointed letter to rheumy in due course. x
NHS. I'd have struggled to get it under normal circumstances, but I recently gave them a letter based on foggyme's references. When the rheumy review failed to suggest anything new, I think they felt obliged to give it a try x
Bloody brilliant. It’s amazing what we learn from this site. Well done you for taking this information to your rheumatologist. And well done them for trying. I’m not sure if you had to enter a battle field with them but hey, they are willing to try x
Yes, without the ideas and help from people here, I'd hae been clueless about this. As it happens, I wrote to the rheumy first and got no reply. It was the GPs who gave it the go-ahead. x
I'm very sorry that your still suffering so much with chronic fatigue/ Fibro symptoms despite the myosotis flare being successfully treated!. Did you write to your Rheumy?. I hope you get a reply soon now that they're back from Easter break!.
Your very fortunate that your GP will trial the vitb12 injections despite normal resukts. I don't think my surgery would and I've bought and take supplements as have normal readings but I'm sure it's helped some symptoms !. Hopefully this wil l be true for you!. Fingers tightly crossed it helps, keep us posted!. Our hedgies came for food at Easter, first sighting since hibernation!. Really pleased they survived!. All the best x😊👌🏻
I haven't written the follow-up letter to the rheumy yet. Just hoping for even the tiniest improvement in fatigue as Im struggling even to get out of bed each day. great to hear your hedgies are back x
Hmm...despite now having correct diagnosis, still having to battle and fight for treatment! Feel like I'm being 'punished' because I can't take hydroxychloroquine (severe allergic reaction) and had to stop azathioprine due to hypersensitivity (turned me into a zombie for the nearly two years that I took it).
God misty14...it's so tiring having to fight for anything remotely like a decent treatment plan. Protestations of 'doing no harm' just don't cut it when there’s an apparent blindness to 'doing some good'...sigh...
The only thing that keeps me going is knowing that I am not alone in this...but really, when did in become acceptable that so many autoimmune folks are left floundering due to lack of knowledge or willingness to 'care' or 'act' on the part of many of our doctors. Shameful and shocking.
And I feel better for having that mini-rant 😤😤😀😀😀.
Thank you so much for asking...and hope that you’re doing okay (whatever that means 🤔🤷♀️😉😉😉 xx
Hi foggyme, it's awful your having to fight for treatment despite having the correct diagnosis now. It sounds to me like your Rheumy dept has a horrible attitude as it's not your fault you haven't been able to tolerate Hydroxy and Aza. Aza is a specially difficult one as I had problems with it twice not as bad as you but it finally had to be stopped!. There are other drugs like MTX and MMF that you could try if you've got the courage after all you've been thru!. MMF specially is better tolerated and a good immuno- suppressive. Just have to watch diorrhea at first but it should settle!. Mtx is good for the arthritis, don't know what your worse symptoms are but its worth thinking about. You got your re- diagnosis presumably from a second opinion so are you fighting for treatment from your original Rheumy dept?.They don't like this !. Could you stay with second opinion Rheumy's ?. Hope I've helped. X
Hi Misty14. I'm staying with the second rheumatology department where I got the second opinion (and correct diagnosis)...no way would I ever see the last one again, even if he was the last rheumatologist on the planet!
The problem is that the Aza partially settled symptoms and I think their aim is to see if I can now manage without...and they’re since said that they want to wait for input from neurology (this could take many months!).
But in the meantime, my symptoms are getting much worse (and ANA is on the rise again). They did say that if things got worse to ring and they'd have me straight in for a steroid injection...but having rang, I find that I have to wait until the end of May for the first available appointment.
So...I'm now feeling disappointed ('cause they didn't do what they originally said they'd do)...and they have since indicated (via post-consultation letter) that treatment will be based on having a flare...and I guess what matters here is if they will accept symptoms...cause if they’re looking only at blood evidence...I'm stuffed (already stated that raising ANA alone is not a good indicator of flare activity).
MMF or MXT were originally muted as potential treatment options...but has since been qualified (in the letter) as 'may be considered if a Lupus flare occurs'...so by no means a done deal.
My main worry here is that, without any discussion in the consultation, Fibromyalgia (a mis-disgnosis from thirty-four years ago) has suddenly appeared as a disgnosis again in the post-consultation letter)!! So if all is written off again as fibromyalgia... (rather partially resolved and re-emerging flare through original under-treatment)...🤬
So...I'm waiting until the end of May really not knowing what will happen...and left again feeling like I'm going to have to fight for even a chance at treatment (and how I'd dearly love to get off the steroids - and I ask myself, surely they’re not prepared to leave me on a steroid only treatment plan - again, don't know).
I have to admit I've been programmed over the years to expect the worst...because that's what I've had (like far too many here)...so perhaps I'm worrying unduly. But first indications do not rise me up to a 'hopeful' level.
I guess it all rests on what they consider a flare...and if they’re going to take symptoms and quality of life into consideration...and if they believe me (that old chestnut again)...and what the neurologist eventually says...
For my own sanity I have to have a back-up plan, so I've already lined up rheumatologist four and five, just in case 😉🤣🤣🤣🤣.
Grief...sorry...I've rattled on a bit here...sorry Misty14...and thank you for your input...it really does help... 😉😀😀 xx
Hi foggyme, I'm sorry at what your having to go thru and I can really relate to a lot of it and feel your right to be concerned!. It's good you have a back up plan , hipefully won't be needed but nice insurance. It keeps me going too!.
I too had a Fibro diagnosis of 32 years ago and like you I've always worried it would follow me to every new Consuktant but I've been lucky that it hasn't so far so I'm a bit staggered that suddenly yours is in your latest clinic letter after so long!. That would put my attenae on red alert!. I'm relieved now actually I'm responding to Hydroxy so they won't wonder Fibro for me again!. It's always on my mind!.
I've had a similar situation to you and I think it's changing Rhrumy's. Mine wanted me off immunosuppressives as I was very poorly in hospital but they wanted to see if I could manage without and just like you my steroids became my only treatment for 9 years now which I wasn't too happy about because of side effects!. I'm sure you feel let down as you've got to wait till end of May for injection!. Not what you were led to believe!. Could you go on a cancellation list?. It's tough when health is worsening and you can't get help needed!. Do they have a Rheumy nurse?.
It's tough too they want neuro input which can take so long!.
Aren't we at Rheumy's mercy when our bloods don't show?. I'm the same and been UCTD for 30 years. I have had a change of Rheumy within same dept as my previous one is doing other things!. It's been a blessing in disguise as my new Rheumy understands lupus and UCTD better and he was willing to put me back on a immune drug and did say he'd put me back MTX. My previous Rheumy said aching joints didn't warrant a DMRD and I'd been struggling to reduce steroids for three years. What dose are you on?. This is a big step for me back on Hydroxy!. It really does come down to the Rheumy's attitude towards symptoms and bloods!. If we find a willing one we must stick like glue to them!.
It's awful too not feeling believed. I didn't feel believed with previous Rheumy but I do with new one and I can talk to him better. It's so important that we are believed . Sounds to me that your clinic letter you've just received doesn't fit the consultation and quite rightly you feel let down and this is fuelling your worries about the Consuktant?z it would me!. Am I right?.
I hope my answer is helpful in that your not alone in your situation. TAKE CARE and I hope you can have the injection sooner. X
Hi Mike. I’m so very much hoping that the injections do get you in a better place. In fact this would be the best post I could hope to read.
Selfishly I’m also intrigued from a personal perspective because I have unexplained gastritis and “functional overlay” and, to use my neurologist’s words earlier today “we really aren’t getting you to a better place are we? If anything you seem to feel worse each time you come in here”
I did ask her about trial of B12 injections and she explained stuff that’s been explained to me many times before about functional deficiency and whatnot. I knew what to ask her thanks to this forum and she agreed that it would be a wonderful thing if my serum B12 showed low and I had PA as an extension of my existing autoimmunity - because then B12 injections could be arranged straight away and I’d hopefully notice a significant improvement.
But only if my serum B12 is under range she says. It never has been before and nor do I have folate or ferritin issues ever, or even anaemia.
I was meant to go to phlebotomy after the consultation but we got distracted by discussing other stuff and she forgot to give me the ticket and I forgot to ask. By the time we realised I was too exhausted to go back so just emailed requesting that I have it after CTD clinic next week instead.
I’m very pessimistic that anything will show - nothing ever does with me these days.
But if it proves helpful for you I’ll dance a wobbly Scots reel for you and feel inspired to keep on pestering. Just now I’m out of pester power but planning to ask about LND at CTD appointment next week as something has to give.
And yes I agree Foggyme has also helped alert me to this atypical B12 deficiency too by her highly informative comments and I’m very grateful indeed to her. Xx
i'll post again when I have something useful to report. But yes, to reiterate - I have literally none of the serology normally required for B12 injections. I do have some clinical symptoms though, including severe unremitting fatigue and some neurological things (mainly daily migraines). I argued that I also had a plausible aetiology in the form of several years of continuous PPI treatment, but frankly I suspect what swung it was they are feeling desperate at seeing me turning up every few weeks looking worse and worse and with no other options on the table. Hope you make progress soon, one way or another x
Well I very much hope the desperate measures on their part pay off. I can’t think how your rheum allowed you to pass him by when he got so badly caught out with Myositis? I guess that their focus will always be on new patients or those who are doing well or have clear cut diagnosis with further pharma treatment options. We just depress them.
Increasingly I am dropping all pharmacology in case it’s inhibiting my Levothyroxine absorption and feeling that Sjögren’s is the outback of rheumatic diseases - ie no one knows nor cares. It’s all just “we do believe that your functional symptoms are real (to you) but your signs aren’t giving us any grounds for alternatives to functional”. I will have to wait for a week and then hope the rheum agrees to do bloods again including B12 and have to hope they are all miraculously off the charts.
Meanwhile my husband almost got gaslit into agreeing that I should be referred for neuro psychiatry CBT today. In fact I can relate because I’m almost minded not to care whether the cause of my fatigue etc is functional, ageing, whatever. But I’ve tried CBT and it didn’t help and neuro psychiatry is using time and energy I don’t feel I have going spare now.
When we got back to the car he suddenly realised what he’d done and put his head in hands and said “OMG that was close - thank goodness you stood your ground!” I only stood my ground because I feel there are still things like B12 injections and other alternatives to try. X
Twitchytoes...quite disappointing that your consultant appears to think that PA is the only cause of B12 deficiency (it's not, there are many....). Also disappointing...and quite shocking in light of BSCH / BMJ guidelines and an abundance of research evidence...that they're only prepared to treat if B12 is under range.
Functional defiency is quite rare...and not likely to be a cause...but...B12 deficieny in the presence of apparently 'normal' B12 levels is not rare and happens on a regular basis (so in this sense, not atypical - at least in the sense we understand atypical AI disease).
The serum B12 is so unreliable as a marker of B12 deficiency that there have even been calls to abandon this test altogether. And all guidelines (BMJ/BCSH etc.) stress not relying on blood tests alone for disgnosis...
Those with B12 deficiency (from any number of causes) hit the same problems as many here do with trying to access diagnosis and treatment for AI disease...many doctors are ill-informed...and some just make it up as they go along!! Or rely on decades old diagnostic methods (most recent guidelines were published in 2014 - many havn't heard of the, much less read them. And many GP surgeries reply on 'local' guidelines that have not been updated for decades.
Sorry...I'm ranting because I'm just so frustrated at you not being able to access B12 injections. It's a vitamin!! Safe, non-toxic, not harmful...and often the only way to determine if it will do any good...is to try it.
So sorry that they’re not prepared to consider giving you an opportunity to even see if it makes a difference...and you are a high risk 'candidate'...sorry to say 🥴.
Anyone would think that you’re asking for a contolled substance...and I bet that would be easier to get. Sadly. Sigh. Sorry.
Thanks I’ll post anon dear Foggy as don’t want to hijack Mike’s post. She did seem to be saying quite a few things that you have said too but said that the fact that it was very high 18 months ago after supplementing it means that I can absorb it at least. She then went on to say that B12 injections might change other results to my detriment and it does involve IM injections etc.
I wanted to say that it wouldn’t matter if my blood results were altered would it if I felt well and poo poo about injections being unpleasant - I injected Methotrexate into my belly for 2 years after all?! But I went for diplomacy just in case my serum B12 has miraculously dropped to below range. Or in case she adds an addendum to functional ie “depressed and functional” or “showed challenging behaviour over B12” 🤷🏼♀️🙄 - it has been known!
I will post soon. Just licking the latest emotional scars!! X
Grief Twitchy...what an odd comment about B12 altering other results to your detriment...this person was wrong.
Briefly, modern blood tests are highly specific and none can be altered because of B12 injections (excepting, obviously serum/active B12 and MMA - and neither would be to your detriment.
She was right about having IM injections (or SC, if this is preferred)... astonishing to think that she views this as a problem when weighted against the possibility of B12 deficiency, the potential for irreversible neurological damage...and, of course, the possibility of symptom relief.
Well I’ve taken it a bit out of context Foggy but yes I think this was the gist. I don’t really have very enlightened doctors who are prepared to risk being adventurous in order to try and make their patients well - although they are all nice enough people I guess. When mine all run out of options or ideas they resort to suggesting pain clinic, antidepressants or CBT for me rather than practical suggestions like a trial of B12 injections. It’s as much as I can do these days just to stand my ground.
I did once make a formal complaint about a locum GP who told me that our serum B12 doesn’t vary much s once it’s normal then there’s no point in retesting. She later made a very personal attack about me on my notes so I had to do something and included the flagrant inaccuracy of what she has told me about B12 in my letter of complaint - which was upheld for other reasons. So me, doctors and B12 don’t have a great track record🤷🏼♀️🤭😬
I haven’t been keeping up much recently, as you know. I’m really sorry to hear that you ended up with a Registrar and no real help. Thank goodness your GP is willing to try anything to help you. I hope the B12 injection helps. I’ll have everything crossed for you. Wendy x
YES. This happened to me. The Lupus attacked the lining of the stomach. Have to have B12 Injections due to low intrinsic factor. Now I'm getting near regular iron infusions too.
Why do we have to constantly fight to get treatment we need especially when our energy is at it’s lowest ebb... i recently felt like I was at the end and decided to fly abroad for treatment. Fatigue was so severe I travelled by wheelchair.
Based on recommendations acquired immunologist and rheumatologist and they prescribed an IV bag of high dose B6, B12 and Vit D weekly. It would make me feel sleepy initially but after a nap woke up feeling human for the first time in months. After additional testing they found my immunoglobulins (subsets of G specifically) were very low (too many years of biologicals & immunosuppressants) and gave IV immunoglobulin G.
On returning to to UK been advised my levels are not considered low enough here for that treatment... but am welcome to get it abroad as ‘it won’t do me any harm’... 🤬🤬🤬... ‘or affect any blood tests’... interesting compared to what they told you....?
Am so glad you have a decent GP, hope the B12 helps with the fatigue. Might be an idea to get your immunoglobulins checked if you have been on MTX or any other biologicals.
PS: There are services in London where you can get IV multi-vits privately...
Thanks Maincoone. It does worry me that there is such a difference in the treatment that is available to people with the money to spare and informed support networks versus those who live in poverty. x
😳 Sadly more to do with desperation, an awful rheumatology service, no immunology service, a fantastic credit card plus a very supportive family that includes a Haematologist abroad...
Desperate times call for desperate measures indeed! After reading of your decision this morning to go ahead with these injections and some real support from others during some desperate feeling times of late, I was inspired to embark on a desperate measure decision myself today, which I have just posted about.
So I just want to thank you for posting this. You never know who you might be encouraging along as you share your difficult journey. I am praying you get your mojo back!
thanks panda. Your story too will definitely inspire others. 'Hang tough' as they used to say! x
I also think your "state" is the disease being active.
NHS is very good if you are in a critical condition, without intervention, you will die. They will spend money on you.
If not, "let's wait and see", their attitude sucks (cannot be bothered to use something more polite). I have been to immunology/rheumatology deps (not just one or two), they are not going to deal with "fatigue" issue as it cannot be seen unlike deformed hands/feet etc. Abroad, doctors are far more caring and well-funded with decent up-to-date scanners etc. NHS is a very tough place for many autoimmuners with systemic (invisible) diseases.
Im afraid you're right. Chronic fatigue seems to be a symptom no-one wants to 'own', Ther result is we get swept into the "FM" bin and told there's nothing to be done but learn to cope with it. When first diagnosed, I had Interstitial Lung Disease with obvious MRI visualisation and bloods. Treatment was prompt and intensive. But at the end of the treatment, I had develpped fatigue so severe I had to take early retirement. I was refered for 'pacing' advice and put on a 6 monthly review schedule. Then I got a myosistis flare and rheumy was again very concerned, even calling my home to check up. As soon as my CK level returned to normal, he vanished, and my first subsequent review was by his registrar, and back to 6 monthly. Of course I am grateful for the help I got during my flares. But for them, the fatigue is of no interest - yet it has destroyed my life.x
I think it might depend how bad the damage is and if it heals. I have to have injections forever. Oral supplements are of no benefit to me because - don't quote me on this - the intrinsic factor is secreted from the stomach lining - and its meant to go - with food - into the intestine - where it works to enable the body to absorb B12. Without it - b12 just doesn't pass through the intestinal wall - and into the system where you need it. So supplements are of no use to me at least.
The Lupus Encyclopaedia states that 'B12 deficiency [one cause being PA]...does not occur more commonly in people who have Lupus than in other people (p154)'.
So...Lupus in itself does not cause Pernicious Anaemia (there is no causal link) but, as we know, those with one autoimmune condition often develop others...so there’s a correlation between having one autoimmune condition and potentially having another (but no direct causal link).
You’re right about antibodies...briefly, there are two involved with Pernicious Anaemia - pariatel cell antibodies (which destroy the parietal cells that make intrinsic factor) and Intrinsic factor (IF) antibodies - which destroy the intrinsic factor. The presence of either of these result in Pernicious Anaemia...also known as autoimmune metoplastic gastric atrophy (AMGA).
Pernicious Anaemia aside, those with an autoimmune condition can suffer from B12 deficiency from a variety of other causes (IBS, Coeliac or Crohn’s disease, bowel resection, the use of PPI's (or any form of antacid), other medications that impede the absorption of B12 (e.g. metformin).
The Lupus Encyclopedia outlines that that dietary deficiency is rarely the cause of B12 deficiency (unless vegetarian/vegan) , stating that 'the most common reason for B12 deficiency is decreased absorption due to disorders such as pernicious anaemia, alchoholism, Sjögren’s syndrome ( Hidden ) , gastritis, heliobactor infection, gastric bypass surgery [or bowel resection]'...(p70) and medications (PPI,s / metformin etc.). (pp154-155).
It's also worth noting that the Lupus Encyclopedia points out that B12 deficiency can also exist where serum B12 levels are within the normal reference range (wish more GP's and consultants realised this).
For those with any of the above causes of B12 deficiency, oral supplements are not appropriate and UK guidelines state that B12 injections are the required form of treatment (this differs in the USA and some places in Europe...but that's another longer 'story'). As Freckle1000 points out, oral supplements did not work for her and she has to have injections for life).
As a brief aside (in case anyone reads and wonders)...there has been recent research that appeared to indicate that oral supplements 'worked' for the treatment of B12 deficiency. However, that research is flawed (no people with PA included, measured B12 levels after oral supplements but did NOT assess whether the treatment actually worked (many still have symptoms even if serum B12 levels rise following oral supplements etc.). Again, a longer 'story' but just including in case anyone is told that oral supplements are just as effective - they’re not. This is an increasingly common 'theme' arisingout of GP consultations and is causing damage to many patient with B12 deficiency - from whatever cause.
Also worth noting that following injections (or any form of B12 supplements), serum B12 levels are meaningless in terms of assessing the presence of B12 deficiency or the efficacy of treatment. The only thing that counts is having frequent enough injections to stop symptoms - and for many people this means having injections much more frequently than the NHS one-size-fits-all treatment regime...but that's another story...😉.
Apologies for the slow response phillippo...I'm a bit slug-like at the moment and just now trying to catch up on responses 😉😀 xx
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Will be drafting something soon, so stand ready...x
x
hrt/menopause and lupus 
Lumpy shoulder ?
