Hi there

[CecilyParsley]

Hello everyone. I am really struggling at the moment. I was diagnosed with Lupus ten years ago then Bechets, APS, Raynauds, Pernicious Anaemia. I started loading doses then got the injections every three months. Two years ago after a bitter disagreement with my GP where she refused to increase my dose despite my feeling dreadful, I started to self inject. She cancelled my NHS injections and refused to provide or dispose of sharps boxes. I was fortunate enough to have a drug and alcohol unit near me who gave me advice on needles and injecting, provided the syringes and needles and sharps boxes and disposing of them for me. I felt better after the first month, injecting once a week. I actually got to the gym twice a week for twenty minute sessions which is more than I have managed for ten years. I am waiting for a total double knee replacement so an opportunity to get fitter and lose the ten stones I have gained through inactivity was amazing. Then my Rheumatologist doubled my Lupus medication causing cysts on my maculars so my medication was stopped dead in June last year. Since then I am feeling dreadful. The fatigue is overwhelming, I have had norovirus, chest infection, and nine UTI’s. I tried self injecting daily but it had no effect. I have had blood tests and my B12 was 2000. I have now reverted to once weekly injecting. I appreciate that my issues are complex but any advice would be gratefully received.

[Foggyme Administrator]

Hi CecilyParsley.

I have been in a similar position to you!

I was originally diagnosed with B12 deficiency, battled for treatment, only had eight weekly from GP, the settled on a weekly regime of self-injection - which worked for me for a couple of years.

I then had what I originally thought was a return of B12 deficiency symptoms (plus more besides) and initially increased B12 injections to every other day - with no improvement - so pushed GP for further investigations.

Turns out I have Lupus (many years of relapsing / remitting symptoms), and key for me getting well is finding a treatment plan that will adequately control the autoimmune disease (no easy matter because my body now reacts badly to most mediations).

I think the key here is that you started feeling dreadful when your medications for autoimmune disease was stopped. So, just wondering...were you offered any other forms of medications (there are many and not all will have in impact on your eyes). Also - is your rheumatologist aware of how ill your are feeling? Can you get an appointment to discuss this (or perhaps ring the nurse or clinic helpline - if they have one)?

I find it a bit odd that they should double your medications (presumably because you were still symptomatic) and then just stop them dead with no offer of any other treatment.

Also worth saying that if your rheumatologist is not taking you seriously and doing their best to help you, then looking for another rheumatologist might be a good idea (something I had to do so I know how difficult this can be).

So...it's really difficult to 'know' what symptoms are due to what medical condition when there's so much going on. But the fact that increased B12 made no difference and your symptom flare coincided with stopping medications for your autoimmune conditions suggests that the issue is uncontrolled autoimmune disease rather than B12 deficiency.

Also worth noting that those with PA often have other absorption issues, so worth checking ferritin, a full iron panel (to get true iron status - because autoimmune disease can 'skew' ferritin levels), vitamin D, and folate. Deficient or low levels in any of there can make you feel very ill indeed. So, worth checking...but on balance, I don't think deficiencies in any of these (if you have them) is the 'full story' (thought righting anything amiss may bring some welcome improvement).

Finally...was the lupus medication hydroxychloroquine? If so, this is known to have the potential to cause eye issues. It's a drug that nearly everyone with lupus is tried on first (I couldn't take it due to severe allergic reaction). It's purpose is to help improve symptoms and prevent potential progression to organ damage. - though it doesn’t suit or work for everyone. Mepacrine is in a similar drug class (chloroquines) some tolerate this well but there are many who can't take either. Those who cannot take either and remain symptomatic are usually prescribed Disease Modifying Anti-rheumatic Drugs (DMARDS) - Immunosuppressants - to control active disease, improve quality of life, and prevent progression to organ involvement.

I think it would be a really good idea to discuss other treatment options with your rheumatologist, emphasising the impact your symptoms are having on you - and your quality of life. And perhaps try to get an appointment fairly soon to do this.

I'm also aware that getting treatment for Lupus is sometimes not easy (there are brilliant rheumatologist out there - and there are some dreadful ones too). So if you have one of the not so good ones, please do research and have your care transferred to another rheumatologist (LupusUK have a list of Rheumatologists who specialise - or at least have an interest - in lupus - unfortunately, not many seem to!).

Very best of luck...I know how difficult these things are. And also how long it can take to get a diagnosis...and a treatment plan! Be really interested to hear how you get on 👍xx

P.s. - don't worry about your high serum B12 level - that's usual when on injections - and no reason for your GP to suggest stopping (or reducing) injections x

P.p.s. - Disgraceful lack of care and ignorance from your GP in respect of B12 deficiency. Sadly, not unusual but very sorry to hear how badly you've been treated 🤬x

Another p.p.s...just glanced briefly at your posts in the LupusUK forum - and oh no, what a shocking rheumatologist!! Are you able transfer your care to someone who actually understands lupus...and deals with their patients appropriately. And kindly! Sincerely hope you don't live in Wales!! So very very sorry xx

[CecilyParsley in reply to Foggyme]

Thank you so much for such a thoughtful and detailed response to me. I do indeed live in Wales. Yes I was on Hydroxychloroquine 400 mg for ten years. My Rheumatologist left and I saw a new one who holds Lupus clinics so I was so hopeful. On my first visit he said I am going to up the Hydroxychloroquine as you tolerate it well because of the flares I was having. After six weeks of taking 600 mg I started to struggle with reading and getting headaches. The Amsler grid was waving so I saw an Optician who sent me to the macular unit. I called the Rheumatology helpline and was told to stop the drug. When I saw the same Rheunatologist his attitude was appalling. He told me that I did not have Lupus, Bechets, APS . He said he saw some People like me who always had something wrong but that there was nothing wrong with them. He said that I had had crap advice from so called clinicians like St Thomas’s and that in his opinion I had Fibromyalgia and hysteria. I have never been so shocked and distressed. I came out of that appointment thinking if there is nothing wrong with me why do I feel so ill? Since coming off the Hydroxychloroquine I have seen more doctors because I am constantly unwell. The fatigue is debilitating, the infections just keep coming, I have had a cold and diarrheoa for three weeks solid despite taking morphine and ferrous sulphate. Now the funny turns have started, giddiness, puns and needles down my face, lunging to one side as if I am drunk. I have mouth and genital ulceration and I am starting to just give up. It is relentless. The new Rheumatologist wanted to discharge me but my GP wrote a strongly worded letter insisting that given my inflammatory markers and symptoms I needed to be seen. I got an appointment to see a new Rheumatologist. His first words were I know everything about you. You have uncontrolled Fibromyalgia 😱Thankfully I had prepared a three pages list of Consultants diagnoses. Initially he refused to read it but then agreed that I could read it. At least he examined me ( which was very strange ) and announced that for someone so obese I was very sprightly. He said be positive you have very mild UCTD, go and live your life. I burst into tears that at least he was not saying Fibro . Honestly my bone profile is odd. I have very low cholesterol 2.5. I have low foliate even though I take 5 mg folic acid plus ferrous sulphate. I have high calcium. One of my Rheumatologists stated that I should he tested for hypoparathyroid as I have a very Underactive thyroid and take 120 mg Thyroxine and very low Vitamin D and take Fultium D twice daily for life. The next Rheumy said I had enough wrong without looking for more.I am clutching at straws to try and find what the hell is wrong with me. I am wretched and beaten. I cannot tell you how much it means that you have responded and tried to help me. I am seeing a GP tomorrow and hoping that he can at least try to help me. I feel scared to tell him just how low and fed up I am in case he writes it off as anxiety.

[Foggyme Administrator in reply to CecilyParsley]

CecilyParsley...this is just shocking, and it breaks my heart!!

And that Hydroxychloroquine dose of 600mcg shocking - way too high (200-400mcg is the recommended dose...the aim being to be on the lowest effective dose). And if the dose is not effective - then other medications are needed!

The fact that your GP wrote a strongly worded letter insisting that you should be seen hopefully stands you in good stead for them giving you the support you need...and pushing for you to be seen again...by a different rheumatologist (though I understand the ways protectionism works, in that rheumatologists in Wales simply support each other - always at the expense of the patient!!

For any reading, so you have a better picture, Wales do not have any Lupus specialists, general rheumatologists in Wales (and most places) have little knowledge or understand of lupus, patients are undiagnosed or misdiagnosed and left untreated. There have been cases of organ damage and death due to lack of treatment! Patients are not allowed referral to England for appropriate Specialist treatment! This is happening to all Lupus patients in Wales (sorry, know this is off topic for this forum...and a bit of a rant...).

Do ask your GP for a referral to endocrinologist (or try to bring your appointment forward if you already see one). Thyroid problems are common in those with autoimmune conditions and the suspicion of hypoparathyroidism should be investigated - properly. To suggest that this is not followed up 'because you have enough wrong without looking for more' leaves me utterly speechless! Like we trawl the internet of things selecting delectable diseases...to go with those we already have! Also - worth considering if your hypothyroidism is properly controlled and treated (under or over medication can cause severe issues. Your GP could perhaps test your TSH FT3 and FT4 (FT3 and FT4 are important - TSH says nothing about how the thyroid is working - though many GP's won’t do this - and endocrinologist should).

St Thomas's has an enviable reputation in the diagnoses and treatment of autoimmune conditions, so to discount their opinions (and diagnoses) and replace them with diagnoses of fibromyalgia (the F word) and hysteria... just not acceptable (I wish I had a pound for every person with autoimmune issues (and others) that are dismissed with any of what I call the dustbin diagnoses (fibromyalgia, FND, CFS, ME, anxiety, depression...of there are plenty more...bet you've heard them all!)!

Please please please do tell your GP how very low and ill you feel. Who wouldn’t, given what is happening to you...it's a perfectly normal reaction to what is, in essence, medical abuse (evidence shows that this is what is happening in Wales). And your GP, I think, will be one your side - he can see your blood results, for starters - and how unwell you obviously are, and has already been pressing for you to be afforded proper care. It's an understandable fear that you will be dismissed as anxious or hysterical (again)...but your GP knows your medical history and should want to fight for you - and the indications for that are good...so be brave, have the courage of your convictions...and say it like it is. (Take someone with you if you can - that always gives me extra courage, when I need it).

I know that patients in Wales are being denied referral to lupus specialists in England - it might be worth asking your GP if he can see a way around this - though my understanding is that this has to be done by a hospital consultant - and they always refuse (but I sincerely hope that I am wrong).

I know that some in Wales get around these issues by seeing a private specialist in England, and then having their GP's deliver the suggested care, on the NHS (some agree to this, some don't- worth discussing with your GP if this is a possibility for you). It's quite shocking that patients have to resort to this and it's not an option for everyone...but if it were possible (even as an interim measure) you could at least get your diagnosis reinstated and commence an appropriate treatment plan.

Also - you might like to consider contacting Kevin (Chair of Lupus UK) - I know that he and Wendy (LupusUK forum members and support group lead) are taking the Wales issues up at the highest levels of the NHS/Wales government. They are brilliant at supporting those in a similar position as you and may well have suggestions that I don't (you can contact either of them through the 'chat' function via the LupusUK forum - or Kevin via the LupusUK website).

I really can't tell you how angry I am in your behalf CecilyParsley...and I do so wish that I could wave a wand and summon up some better doctors for you. You deserve better!

I'll be think of you tomorrow and sending strength and hugs when you’re sitting in that chair in front of your GP...just remember...you deserve better...and it's your right to expect that.

Very best of everything xx

[CecilyParsley in reply to Foggyme]

Thank you so much. Yes I have been speaking to Wendy and given permission for my diagnoses and treatment to be shared. I was unaware until I spoke to Wendy that we in Wales are now denied a referral out of Wales for specialist consultants. I must have been extremely fortunate that I was referred to St Thomas’s in 2013 after. Rheumy decided I did not have Lupus and took me off steroids and Hydroxychloroquine. I developed shortness of breath and after a CT scan revealed swollen lymph nodes around my heart and lungs I was referred to a Haematologist and Oncologist and diagnosed with low grade lymphoma. I sat there in shock as they were discussing biopsies and talking about four years life expectancy. I did not tell my hubby but started to plan, making a will, telling friends to look after him etc. Then one night I thought hang on this started by coming off the meds so I asked my GP to refer me. The consultant at St Thomas’s was unequivocal, unless someone else has taken your bloods for you, you have SLE. I had a repeat CT scan two months later and was discharged from Haematology and Oncology. I was back on steroids and Hydroxychloroquine. Six months late St Thomas’s said they felt I did not have Lupus but UCTD and Fibro. I cried all the way home from London. My then Rheumatologist back home wrote that I was disappointed because I desperately wanted Lupus ?? I am a reasonably intelligent, articulate woman who held a professional job for 23 years yet they make me sound crazy. The newest Rheumatologist makes me extremely uncomfortable. He slaps my flab, constantly makes comments on my weight and stares Lupus is very different to what you have. The more I challenge the more irrational, deluded and hysterical they make me appear. The last one wrote that I had poor opinions if health professionals especially those who disagreed with my self diagnosis?? All I want is to feel able to pick myself back off the floor. I am so utterly fed up with this existence. It is badly impacting my husband too. He is angry and distressed for me. So sorry I am ranting too. I know they do not have magic wands but by dismissing my symptoms and how they impact me it has such a negative affect on my mental health. I was a very happy, optimistic person before I became ill. I fully intend making my ten minutes count tomorrow. Thank you again for your kindness xx

[Sleepybunny]

Hi,

Sorry to read how hard things are for you.

I can't really comment on lupus side of things but if you want to know more about PA and B12 deficiency, have a look at following links.

PAS (Pernicious Anaemia Society)

Based in Bridgend, Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

There are two PAS support groups in Wales.

B12 Deficiency Info website

b12deficiency.info/

I wrote a very detailed reply on another forum thread with lots of links to b12 websites, b12 books, UK B12 documents and other b12 info.

healthunlocked.com/pasoc/po...

Hopefully you'll find something useful in it.

Lupus charities and organisations

Lupus UK

lupusuk.org.uk/

Lupus Trust

lupus.org.uk/

[CecilyParsley in reply to Sleepybunny]

Thank you so much. I am a member of two groups for B12 on Facebook and I have to say they have been amazingly informative. I was a member of Lupus UK and bought books and read up when first diagnosed but I let my membership run out when I had the diagnosis removed .

[Nackapan]

I just want to say I can totally relate to your'turns"you posted 4 days ago.

That is exactly what I called them when trying to explain them to a Gp.

I didnt have a cold. It has happened 3 times . Came on suddenly went ashen balance went legs like jelly veering to one side. I also got very busy loud tinnitus.

Had to keep very still. The longest it went on for was 4 hours. I then got a headache. Also felt very 'hung over the following day's very scary and I've had horrible neurological symptoms in the past and o ngoing head pains ect.

I went to the doctor after the 3rd time it happened for reassurance.

I asked what I should do. He replied dial 999

I asked what it could be caused by. He said Anxiety !

I asked what he thought was happening to me.

A vestibular disturbance?

Or part of a migraine or a sort of virtigo.

I left very upset as it was not caused by anxiety. I felt anxious after but not before

He offered a drug used for schizophrenia and epilepsy sodium forate .

I didnt get it as he didnt really know.

I suppose it's on my notes at least it happened.

I do hope you find a good specialist soon that has the expertise to help you.

[CecilyParsley]

Oh no the dreaded anxiety again. It makes me so bloody angry honestly. I am so very sorry that your GP was so unprofessional as not to investigate further and that you are now left with no real understanding of what caused your funny turns or when they will happen again. It really is not good enough. Personally I would have told him to stick his drugs for schizophrenia where the sun doesn’t shine. I hope you can see a different GP, one that is not as judgemental or dismissive xx

[Nackapan in reply to CecilyParsley]

Well put!!

I saw a different gp on purpose as a partner really to see if a second opinion would help. I was wrong. My chosen Gp.out of 6 in the practice has at least listened and agreed to the frequent b12 Injections I have.The only thing to date that hrlo me in any way I've still not had one symptom free day though . I was on my hands and knees today putting washing in the machine as very off balance.

But last consult she threw me by saying she thought my deficiency dietry. ??ti try tablets again

Also I'm not getting better as I wont take drugs. I've been prescribed serttraline duloxatine clonidine prochlozazine propranolol sodium folate diazepam sumertriptan gabapentin. I have tried amitriptyline and hrt she prescribed but unfortunately had a bad experience with both. I was disappointed .

I've even got as far as getting some from the pharmacy. But £9 wasted as on getting home ive thought I'm not depressed I'm ill. If I was depressed I'd take an antidepressant. So it's quite patronising really to keep being told I'm depressed anxious ect . I know my body. I'm actually showing great strength not tk be depressed.

That In all of us is never acknowledged.

I'm too poorly to simply try a drug on a trial and error basis . She has said she is learning from me. Not great really but they are our gateway to specialists.

Need a clearer diagnosis to be convinced its worth trying a drug again . It can confuse matters . The gp tried to get me to take sertraline to help come off HRT . I know now why it was the serotonin levels dropping that made me very dizzy and ill in a different way . I was only on it 3 weeks and i tapered off !!

I really wish a doctor would listen , test try and get to a diagnosis.

I find that before youve explained they are searching their brain for a drug to prescribe and get you out the door.

I've been tenacious though as they are missing something . I shouldnt still be this ill.

Exhausting . I wish you well. There must be a doctor somewhere that can join the dots and help.

O

[CecilyParsley]

When I first was diagnosed with Lupus I was on no medication other than an inhaler. Within weeks I was on 46 tablets daily!!! I started to think I had Alzheimer’s I just could not function. At the pain clinic the doctor wanted to add paracetamol to my morphine and to up my Garbapentin I refused and was discharged. I have gradually got rid of medication that is not effective and now take 15 a day.One of them is an antidepressant because I have come so close to giving up this past ten years. They help me keep my head above water so to speak. Xx

[lynxis]

Many people with autoimmune disease(s), myself included, have found great improvement with the autoimmune protocol (AIP) diet. I have found this website really helpful in my AIP journey. I am linking to stories of recovery, but all the resources herein have been very helpful to me. I wish you relief and wellness in whatever way you're able to find it. Lots of love.

autoimmunewellness.com/stor...

[CecilyParsley]

Thank you so much xx