Seronegative Lupus?

Hi everyone,

Am feeling so miserable and sorry for myself which is pathetic when I read how so many of you out there suffer too. Most of the problem is that I have been ill with some sort of mystery autoimmune thing for about forty years or even more.

After numerous visits to hospitals, finally getting to Rheumatologists bloods have always been frustratingly negative. As soon as that happened I was told fibromyalgia, go home and get on with it. As years went by it all gradually worsened, joint pain, dry eyes and mouth, constant biliary infections and pancreatitis, sensitivity to lights, kidney infections, massive flares etc etc.

Finally two years ago I saw a super Rheumatologist privately, who would listen and think. He decided despite negative bloods I definitely had Sjogrens Disease and was suspicious of Lupus too.I was on Prednisalone 5mg per day and also hydrocortisone, can't tolerate higher steroid due to stomach issues gastritis.He decided depot medrol injections were the way forward so I get them every four to five months 120mg.

Initially they were like a miracle but after four times they are not working so long and then I have to revert to low dose oral Pred which is not enough. I can't have my next injection till Feb and life at the moment is a real struggle.I am flaring at the slightest thing, with hot red face , sore joints , bile duct problems, heart arrhythmia and angina and desperate fatigue.

I like one short walk a day with my dog, but if it is cold , windy, rainy or sunny. I get a flare. We even had to change the Christmas tree lights as the LEDs were giving me a flare too.

The last time I saw him he said he was not keen to change my meds due to the liver issue, can the newer biological drugs be taken with people who have liver problems? Or am I stuck on only the steroids.I tried the hydroxychloroquine but it attacked biliary system too and had to stop in three days.

Just feel so frustrated, because my bloods are still normal the Rheumatologist is not keen to try anything new

Is there anyone here who is seronegative? I feel I have fought my whole life to be believed because of my normal blood results and now thankfully I have a good Rheumy but such few treatments possible apart from the steroids.

Have heard of some people going to London Bridge Hospital but am in Scotland and at the moment am too unwell to go more than a few miles.

Sorry for the length of this but am awake as usual in middle of night with usual flare keeping me awake. Wasn't nearly so bad in summer, think the damp and cold are dynamite.

Hope you are all tucked up tight and sleeping soundly . C xx

39 Replies

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  • Meant to add! I can eat almost no protein and no fat at all or I get sever biliary pain. No, eggs , cheese milk, meat etc, only a tiny amount of turkey meat, or any shellfish is ok. Even salmon or trout are too oily. I am low b12 and Vit D so take supplements and also Gluten free, wheat is dire so have had none for many years.

    Can eat most veg except cauliflower and broccoli.

    The digestive problems really get me down, so hard to feed the family normal food yet I can hardly eat anything or I am ill, Christmas was torture!!

    Once was put on liquid food but it is high protein so upset me too.

    All this makes tackling the autoimmune problem with diet so difficult.

  • Hi sorry for how you're feeling. I was under a very dismissive rheumy and I moved to gsst and really was the best thing I did so if you find you can ever manage the trip it would be a good move. I have fibromyalgia as well my other illnesses and pregabalin was life changing for me. Hope you find something to help.

    Lesley

  • Hi Cuttysark

    So sorry to read of all the problems your having. Rest assured your by no means alone with the difficulties of diagnosis. I've had negative bloods for 29 years but still had treatment like you have found open-minded Consultants!.

    Have you had the advice of a Gastroenterologist for your liver problems ?. Can they be treated?. Also have you been offered Losec for your gastritis?. I'm thinking that maybe then your steroid dose could be increased slightly and could help your flare?. Your stuck at the moment with a lot of problems and no leeway and there's nothing worse than not being able to sleep!. Hope you improve soon.X

  • Thanks Misty and Lesley for your comments. Sometimes it helps to have a vent to others in the same boat, most folk really don't understand it at all , as to them you look OK and your red face looks healthy!!!

    I am on Nexium which is like Losec and have thankfully a good gastroenterologist but he thinks I have Primary Biliary Cirrhosis from the Sjogrens so also take Ursofalk a bile acid which helps the biliary pain but not really the eating. I also take lots of pancreatic enzymes when I eat as my pancreas doesn't work right.

    I went through years of operations and Botox treatment to widen the sphincter of oddi where the bile duct and pancreas meet( also gall bladder out) but now they think the problem is inflammation in the tiny ducts in the liver.

    When I have the large steroid injection I can eat protein again for a few weeks which is wonderful only white meet and fish but even oily fish which is a nice change as I live on prawns and salad.

    What treatment are you on Misty, has it helped you?

    It was the extreme light sensitivity that is making them now think Lupus. Years ago I had a really dismissive Rheumatologist who said Lupus was impossible with a negative blood test. He would take blood twice a year, shrug and send me home with nothing. I used to come out of the hospital with tears running down my face! Thankfully my new one is so nice and treats me properly and tries to help, but even he says he is reluctant to use the stronger drugs because of my negative bloods.

    I did try the gabapenton, Lesley but sadly could not tolerate it either as it gave me heart arrhythmia!! Always something, I just seem to be so intolerant of most drugs out there.

    Anyway, thanks for replying. xx

  • Hi, I'm seronegative as well and my lupus has started with the gallbladder too. The drugs that made a difference to the gallbladder issues were Mycophenolate Mofetil (CellCept) and Ciclosporin (Neoral). Both drugs are immunosuppressants. The former has managed most of my biliary symptoms but the latter resolved them fully (I'm suspecting that as ciclosporin is metabolised in the biliary system, it has a stronger effect there, but it is only my view and I'm no doctor).

    Before being diagnosed with lupus I saw a hepatologist and a Harley St top gastroenterologist, both scratching their heads at the symptoms, not understanding the cause. That didn't change even after being diagnosed because they said that it is unlikely that lupus would attack the billiary system, so it can't be that. Only by persevering with my rheumatologist about trying different drugs, that's how I managed to resolve this. Unfortunately at the moment I'm off all meds for lupus because some eyes issue but I'd readily go back onto these two once the eye issues resolve (fingers crossed that they do).

    Steroids and hydroxy don't even touch the gallbladder symptoms, in my experience.

    I'd go back to the rheumatologist and lose my rag saying that he needs to treat the symptoms not the blood tests and that you're in such pain and suffering, he needs to put you on immunosuppressants. Mycophenolate is now increasingly used for lupus because it's lower side effects. There are other immunosuppressives - Methrotraxate or Azathioprine - but generally they are toxic for liver and Aza in particular can be detrimental to the pancreas.

    Good luck, I know how frustrating this can be, we've all been there.

  • Hi Cuttysark

    Like Misty, I was diagnosed with sero neg Lupus 25 years ago. I was lucky enough to see a Consultant who treated me with prednisolone at the very first appt. I have never really taken the condition seriously and many years can pass between my appointments. Like you, I always had neg bloods for everything but had chronic Leucopenia. Sometimes low C3C4. I changed Consultant in 2011 and he queried the dx so I was sent for 2nd opinion to a Prof in Rheumatology. She agrees SLE sub phenotype and we now call it UCTD. Treatment is the same - prednisolone, Hydroxychloroquine and Mycophenolate.

    I have come a long way with my learning curve and now realise that the title of the condition is less important than how your Dr(s) address each and every problem. I have muscle weakness, nerve damage and respiratory issues too now which are related to the CTD and are more troublesome than the original arthritis, myalgia etc. There is no doubt that my Rheumatologist scratches his head when I ask him questions, he doesn't have all the answers but there is huge scope for overlap in these CTD's. at my last appt, the Prof told me that it was important for them to remain very open minded as this means they are less blinkered when considering new symptoms.

    I really hope you can find some resolution to your problems. It is very hard when you are being attacked from every angle bit a sympathetic approach from your GP and Rheumatologist goes a long way to help. There are many Complementary therapies that may ease your problems without side effects.

    Good luck and best wishes. C x

  • UCTD? I never heard of it. Thk you for your information.

  • You poor thing it really sounds as if you've been through the mill.

    I'm four years into symptoms which led to a diagnosis of RA but also have hypothyroidism and a long history of allergies including severe Alopecia. I have spells of extreme pain in my upper abdomen that no one has really checked out apart from that I have gallstones. I have to avoid many foods too bit not as many as you. I'm assuming that Coeliacs and Crohn's have both been ruled out?

    Fortunately for me I'm still pretty fit and well usually although I have spells where I'm too exhausted to function or where my mouth and eyes are relentlessly dry. My main problem is small fibre neuropathy which is progressing and quite advanced in that it's reached my hands and arms as well as feet and legs. I'm having further checks soon under a neurologist who seems thorough. I also live in Scotland and am stuck with a rheumatologist who is really only interested in RA and swollen joints it seems. I've tried many drugs including three DMARDs which I've failed to tolerate so can relate to this too.

    I spoke to a person on the BSSA helpline recently and she said that people with Sjogrens are often the least tolerant because we don't shed toxins as well through lack of moisture production. Since then I've been drinking (and weeing!) a lot more water daily as well as using saliva stimulant pastels and Naseptin and my eye drops more frequently. I don't know if this is the reason I'm so far tolerating a very lowest dose of a drug called Duloxetine but I am. That said it's doing not a lot for the nerve symptoms at such a low dose but my stomach is presently calm and I suspect this is because the gallbladder problems are part of my neuropathic ones.

    I worry that I too will be left high and dry as the small fibre neuropathy progresses and the numbness it causes leaves me increasingly less mobile. I did have a low positive rheumatoid factor and my thyroid antibodies were positive but all other antibodies have been negative so far. My inflammatory markers are usually high which apparently confirms autoummunity but not a lot else.

    If you go to Sjogren's World forum it is full of people with sero negative Sjogrens who are also negative for other autoimmunity which has delayed their diagnosis and treatment.

    So you are really not alone at all and, although I can't offer any advice about drugs which might suit you or alternative treatments - sometimes just knowing that others have similar issues and daily struggles is comforting in a way too.

    Take care, Twitchy

  • Hi Purpletop,

    Most interested to hear which drugs you are on and can't believe there is someone out there where it all began with the gall bladder too! Thank goodness you got to really good doctors and that you get the stronger drugs. My feeling is that the steroids I am on are just a sticking plaster and don,t do much.

    I had a disc removed in my neck three years ago and a metal plate inserted as my spinal cord was being damaged by it. They gave me a huge long acting dose of dexamethasone intramuscular ,to ensure there would be no inflammation till it healed. That type of steroid is about the strongest there is so is not normally used. Lo and behold I could eat again immediately and it lasted three months with no biliary pain. In fact it was the neurosurgeon after that op who sent me to the better Rheumatologist. He said negative bloods or no, I did have an autoimmune disease!!!

    I will certainly ask about those drugs when I see him next.

    Many thanks xx

  • Hi Clare,

    Thanks for your reply. I also had Leucopenia a couple of times but not recently . My GP surgery lives by blood results and ticking boxes but fortunately the one I go to is a bit more open minded, but only a bit! Without the Rheumy writing to her she would not have believed I had anything autoimmune at all.

    You are so right I think I just have to go back and see the Rheumy Consultant and let him know just how bad things are.He is extremely busy as he is the only good one around but I could see him privately and it would give me more time to talk to him.

    All the best, xx

  • Hi Twitchy,

    Really good advice about drinking lots of water, I will certainly try that, it makes sense we won't excrete toxins with less moisture in our systems.

    They have ruled out Cealiac but one doctor still wondering about Crohns . My Dad had Ulceratove Colitis which seems to be a genetic marker for other diseases like that.

    Was so interested in your neuropathy, I have damaged nerves lower side due to endometriosis from when I was twenty years old till fifty. It went away during pregnancies, I have four sons, then back with a vengeance ,so hysterectomy when I was forty five. I am now sixty one and the Endo nerve pain has returned they think due to hormonal upset due to the steroids!!!! The biliary pain began in early twenties too.

    I have nerve block injections for the nerve pain but it is awful, nothing touches it, not even morphine.The nerve block works for a little while. I will ask about the Duloxetine. I also get sever muscle weakness in cold weather or in hot weather,

    Lat week it was so bad on a cold night I fell off the bed splat on my face trying to retrieve a book to read in the middle of the night!!! No strength in my arms at all!!! Fortunately I fell on the sheepskin and felt so daft but I could not get up at all for a few minutes till I manoeuvred by knees to push me!

    My husband sleeps in the spare room now as I am awake most of the night! One thing good is that once I have the steroid injection at least I sleep for a good few weeks again but in talking to all you folk I think it is now time for something else a good bit stronger.

    I am so tired I am in bed every afternoon for four hours, feel like I am rubbing out half my life.

    Really helps to hear other,s stories, make me feel hope out there and human again.

    Have a sweet nine month old border collie, she keeps me smiling, can't resist her!

    Hope you have a better day too. xx

  • My dogs keep me on my feet too - and the hugs and nuzzles are the best tonic after a lousy night I find!

    Nerve pain is the absolute pits I know - for me it is much worse than the pain of RA which has actually gone into retreat for a long while although my shoulders and neck are very achy and stiff often so maybe this is it. I've found that it's also easier to elicit sympathy from my family and doctors when the joints are playing fractured and are red, hot, swollen and stiff than it is to convey how awful this invisible pain actually feels. I have to get out of bed once or twice or sometimes more often to run a cool bath and soak my hands and feet in it. The awful chilly numbness has even spread into my groin (the V part!) now which makes me panic. I don't know why my rheumy and the GPs have been so focussed on avoiding joint damage that they have allowed my nerves to become damaged without doing anything to treat apart from with sticking plasters ie Prednisolone, Amitriptyline, Gaberpentin and now Duloxetine.

    I don't share a bed with my hubby anymore either as he snores (he works part time nights which makes this worse) and I thrash about and have to keep cooling my burning extremities down through the night. Sometimes when we have to share he wears a anti snore thing up his nose, I use ear plugs and then there's lacrilube and now my mouth guard to stop my grinding and pastels to stop my mouth drying up and together we are like a comic act with all orifices plugged or gunked!

    Not that I don't appreciate the doctors' attempts at relieving the pain but sometimes I feel they are just pacifying me to stop me from asking for something that could actually address this nerve damage at source - because these immunesuppressant treatments are so much more expensive perhaps?

    I'm ten years younger than you are but like you I have struggled for a long time and I don't want to end up with entirely numb feet and hands and other parts ten years down the line because they are dragging their feet so much. I have explained to them that injectable Methotrexate and Hydroxichloraquine and Sulfasalazine (very briefly) worked really well for my RA, neuropathic pain and I didn't have the abdominal pain while on these either which suggests to me that it's part of the whole autoimmune problem.

    Unfortunately the various side effects to the DMARDs made them unsustainable although I did give MTX and Hydroxy a few years despite the horrid effects. My doctors all just hum and wave their hands around and suggest more pain dullers and anti-depressants and epilepsy drugs. I can't tolerate Prednisolone - it makes me bipolar after too many years on steroids earlier on in my life. So I am looking for alternatives now and trying Paleo (anti-inflammatory diet) and yoga and taking extra vit D and refusing to up my dose of Duloxetine until MRI of brain and intensive blood and nerve conduction tests are done. I think the problem is that they just don't know what to do with those of us who don't fit a clear cut presentation or can't tolerate their cheaper drugs. So they hide behind terms like "idiopathic" instead and then look for sticking plasters for the irreversable problems that their long periods of "simply observing" cause!

  • I found reading your post very interesting. Like you I can't get a diagnosis. Have been battling with symptoms for 20 years but getting nowhere. Bloods keep coming back negative. For me it all started after I had glandular fever. I have the severe joint pain, face rash, dry eyes and mouth, mouth ulcers, thinning hair, easy bruising and crippling exhaustion. I was put on a gluten free diet 8 years ago. I was told I was coeliac but only diagnosed through an elimination diet, not properly so don't get prescriptions for it. I also can't tolerate caffine, citrus, fried food or high fat In October 2013 I developed ulcer like lesions. Started with one on my leg but now have 18. I was seeing a dermatologist but was discharged as he didn't know what it was. I was only referred to a rheumatologist last year and had my first appointment in September. From that appointment I have seen other specialists and had endless tests but still no answers. My second appointment at rheumatology isn't until April so I have a few more months like this. I really hope they come up with a diagnosis as being left struggling, knowing something is wrong, is a nightmare. I really hope that you get a diagnosis and proper treatment soon.

  • Your comment about being discharged by your Dermatologist because he 'didn't know what it was' caught my eye. My resp Consultant opts not to see me either unless cornered by my GP as he also does not know how to approach either the cause or effect of my breathing issues. His favourite letter ending is 'You remain under review' - how can that be? I never see him!

    Thank goodness that not all Drs take this approach. Keep changing Dr would be my advice. One of my best moves was to change GP repeatedly until I found one that was not happy to accept 'no action' as the plan. There are plenty of Consultants out there who have seen more idiosyncrasies and are more receptive to thinking out of the box.

  • Cuttysark...I was positive in February 2014....stArted taking digestive enzymes in March before large meals, and nAtto k enzyme to prevent sticky blood....blood work showed negative, aug 2014. Now mind you...it's not a total cure,but I definitely have more energy because digestive enzymes breaks down food I couldn't do on my own, which was causing my body to get very tired. I still have connective tissue pain, dry eyes (can't open them in the morning sometimes), heart racing, panic attacks (treating that with Passion flower herb) and some brain fog (a lot better since on the enzymes), cranberry supplement for constant UTIs (was in the ER in May 2013 for not being able to urinate. No stones, scarred kidneys believed from constant UTIs) have not had a uti or infection since May 2013. Just got urine tested, no protein in urine or blood. I would say that I am a little nervous about using so many herbal treatments because there seems to be so many effects of this disease. I do use unless I have a side effect. So far, no terrible side effects.

    Some days are still bad with back pain.....but mostly if I get up And move I am ok. Hope you can find some answers on here....feel better

  • Hi again Twitchy,

    You made me laugh about your bedsides littered with devices!! I too have the tooth guard to stop grinding, my tooth plate, ear plugs( we both snore, me if on my back!) my glandosane siliva spray ,all the pills for night time waking two glasses of water( one with potassium, which I lose all the time as kidneys don' keep it) etc etc!!!

    Frequently I wake and knock one of the tumblers over in the dark, panic, pills dissolving , water everywhere, books soggy, floor soaking etc etc!!

    In the morning I have to make sure my mouth grinding guard is in drawer before my collie pup discovers it. I lost two( at £85 each) to my sons whippet!!!!

    I think as you say expense is often at the root of not getting better pills. They see you walk in and think you are fine yet to get there you have to double your medication, take diazapan and are ill for the next two weeks due to all the effort getting to see them!

    Am interested in the Paleo diet, is it easy to follow? I can't take, as well as all meat, any beans , seeds, nuts. Best with veg and I eat a lot of spinich and rice.

    My weight is steady as I fill up on porridge and my own homemade flapjacks and don't have much excercise but have resolution to do some Thai Chi to a DVD take I have.

    Hope you get that nerve pain sorted soon. I had numbness down left leg from damaged illiac fossa nerve at pelvis, all caused by old endometriosis.

    It is all such a battle! xx

  • I think the Paleo might be too difficult to incorporate your intolerences Cuttysark? - it's basically the caveman diet with nuts, seeds and berries, meat and fish and the kind of veg which might have grown wild - spinach etc fine but not carbs or rice or cheese/ dairy. I haven't got the book yet - it's on order from Amazon and a friend with long standing RA is doing it too so we said we'd compare notes. But it is meant to be very effective re weightloss and managing inflammatory conditions so I will try it when I've read it properly.

    I use my nintendo Wii Fit Plus to do yoga and muscle exercises and light aerobics on the living room carpet most days for about 30 minutes. I know I'm lucky to be fit enough to do these still but it's a self fulfilling prophecy - if I don't do these regularly my joints stiffen up and I put on more weight which in turn effects my self esteem and makes me depressed so I am quite religious in my observance of this exercise routine now!

    I managed a night in bed with husband last night and remembered to hide my mouthguard just in time before one of the dogs got hold of it - husband's much more expensive snore prevention one was devoured last year! I find if I put a salivex pastel in the back of my mouth before I put the guard in then I get a good few hours sleep without too much trouble although my husband informed me I snored something rotten last night!!

  • I am not aware of my snoring blamed my husband for making it up, but now my son says he can hear me through the wall in his bedroom!!

    I never used to snore It started with the dry mouth and also the prednisalone , but if I stay on my front it is ok!!

    Glad to hear of another house where the dogs eat juicy mouth guards!!

  • Gloomy Eeyore, I so understand about the frustration with the "under review"scenario. With my first Rheumatologist I had the same, saw him at the very most every eight months, bloods done, two minute consultation, and goodbye. Once I did ask him why he was keeping seeing me and he replied"I'm curious" !!! I am still under his clinic in the system yet I go to a different hospital now and told them years ago to take me off the old ones list but am still there, he still must be curious!!!

    I think the only way is to ask around and try to see a better consultant and keep keep searching, after all it is our very precious life. xx

  • Hi Natura,

    Thanks for your suggestions. I do think there are lots of ways we can help ourselves too. I recently bought some cranberry capsules to help with U TI,s and the hospital put me on pancreatic enzymes about ten years ago but the pancreas has all but packed in now so I have to take a lot of enzymes at each meal or snacks.I also take probiotics and b12 patches( the injections caused more flares) also Vitamin D.

    I know they say you can do a lot to help yourself with an anti inflammatory diet but it means using Oily fish and again I get stuck with the fat content and bile duct. I make my own tomato soup, also r ed pepper soup and sweet potato as long as I make it with vegatable stock and no fat content.

    Trouble is when you are having a bad spell you get so weary having to think what on earth to eat and going away even for the day is so hard when all you can safely manage is salad, I am so fed up with baked potatoes now.

    Sometimes though the way forward is to think of all options and not just the medical ones with all the side effects. Even though the steroids are not great, they have given me mobility and I was getting to the stage of thinking a wheelchair was next!

    Thanks for helping, I really appreciate it. xx

  • Hello, I am in the same painful boat of negative blood tests yet so ill. I can relate to your dilemma. Love Watercolour x

  • Hi Watercolour, thanks for your reply . It really cheered me up yesterday to find others out there with the same dilemma. You are dismissed so often from the health professionals and there is nothing worse. I just felt for the many years when I had no treatment at all,that life would go on in this perpetual nightmare.

    And much as friends and family try to understand it is only my immediate family and a couple of my close friends who really do understand. People can't ever equate looking ok with not being ok , in fact living a bit of a nightmare yet covering for it day after day and keeping going on.

    At least now I am on the right track and I just have to push for more effective treatment from my Rheumatologist.

    I don't know where you are on this tough road, or have had any treatment,but I so hope you will get some answers and at last some relief .

    All the best, C xx

  • Sweet of you to reply to me and I pray for a real opening of understanding. I have seen various Rheumatologists only to find they are all the same. Evidence based by bloods and they will not budge! I did have a slightly positive ANA result but they said they take no notice of that... then why set parameters I wonder? What is ok for one person might not be for the next! My story continues and you do find find out who you can tell and you cannot tell. I live a totally "behind the scenes" nightmare. I have just been left and left although I do have a fantastic GP, he fights my corner for me.... only to find these specialists are one of a kind, with over twenty years of experience, I could tell a few stories! It seems I am drifting into kidney failure and have been very ill lately. Yet three years ago when this was at its worst I said my kidneys don't feel right... yet no bloods... go away! So where is the logic in it all? I personally don't think they know everything and they are only human. I think there needs to be a kinder attitude towards folk like us. I have self helped a lot and lead a good balanced life. I did have photos of a rash and Vasculitus was diagnosed which I am on Prednisolone which is great and I am good on it but they keep wanting to take me off them, without steroids I would be bed ridden? So I have to make the choice of side effects or no life style? They are not God! Please let me know how you get on? There is a way on here of being able to link - and I would be very interested to hear of your future appointments etc., Please keep strong - we are not alone as you can see on this site. Love Watercolour X

  • So sorry to hear of the tough road you have had to follow. Someone maybe should write a book about how people with chronic illness are left to suffer. How awful they ignored your kidney disease just because of the bloods and now it has become so much more serious.

    One blessing is that you have a good GP.I had a wonderful one for ten years but he retired last year, but not before helping me by trying to educate the rest in the practice, that worked with one of them who is pretty good, I have been lucky there.

    Will be happy to keep in touch. I can see so much how much help it is to be able to share our frustrations with others.

    All the best, C xx

  • You take care and lovely that you responded to me... love Watercolour... remember WE ARE NOT ALONE X

  • I'm suffering a lot, Lupus, Fibromyalgia, cornea problems due to Lupus, constant Kidney problems, enlarged liver and now having terrible itchy skin and nerve pains 24/7. My GP will not help and so I sleep maybe 3 hours straight and wake up with pain. Now my limbs are getting more shaky and I fall or walk into things (not sure why) so my life is spent indoors in my bed. As I cannot sleep I am now getting panic attacks in the night as I am desperate to sleep but cannot make too much noise as Hubby and son are asleep in other rooms.

    I weaned my self off the steroids as I was getting too bloated and having problems with it and recently started on a low dosage of Pregablin, 25mg per day which I think is too low, taking 75mg per day but not even hitting the pain.

    Like you I suffered for 20 years or more with a 'mystery immune problem' which my GP's put down to liver problems due to the excessive reading I had, they thought I was a secret alcoholic when I rarely drink. Finally diagnosed as above.

  • Hi Iona

    I went through a prolonged phase of more aggressive flares in 2012/3 and noticed new symptoms which were primarily wobbliness, weakness, tripping and ocular muscle fatigue aswell as weak respiratory muscles. Some of these are less severe since the bad flares have settled but some are worse. I bought myself a walking stick and wondered where it was all going to end. My Consultant was adamant that it was all Lupus related whilst I was equally adamant that it wasn't. 2 years on, I begrudgingly have to admit that he was probably right. Lupus, it seems, can do anything. It's course changes on a whim and it is totally unpredictable. It is such a balancing act getting the treatment right - I really hope you get some relief soon. The same goes for everyone else here x

  • Thanks Clare. I worked with a great person who had Lupus, I didn't know anything about it then. My friend got so wobbly she had to be carried and then died. So much for my GP trying to dismiss this as Fibromyalgia, she doesn't give advice even never mind treatment. I am worried for the future but that's life!

  • Hi, it is interesting that you too have liver problems with lupus. I get that horrible itch all the time too and the muscle weakness. The steroids do help but the side effects including the bloating are awful.

    A few years ago, I used to walk in to things and fall a lot, but it turned out it was a prolapsed disc in my neck sticking into the spinal cord. I had an operation to fix it and I have had no more bother with that at least. I would pester your GP for more help as they are leaving you just to get on with it , which is basically neglect ,and not right when your life is so miserable because of it.

    I went to a pain clinic at the hospital ten years ago and got morphine for the bouts of severe pain. I use it when I need and it changed my life. There is a misconception that morphine is addictive but this never happens if you just use it for severe pain then go down the dose slowly to reduce. My GP however would never have dreamt of giving me it so you have to go to a pain clinic to get it, they then write to the GP,who has to prescribe it.

    I so hope you find some relief, life sounds very hard for you.

    All the best, C xx

  • I have been to a pain clinic and having an op in 1 week, now been referred for the nerve pain but still not being given anything. The quality of my life is just terrible as I am in pain 24/7 and nothing is working. I don't think I can take any more tablets as I am sure that I am at overdose level already but they still don't work! I think it is my back or neck as my neck clicks badly when I move it.

  • Hope your op goes well next week and that they listen,and will pray they find better pain relief for you. Nerve pain is one of the worst there is.

    Wishing all the best for you. xx

  • Thanks xx

  • Hi cuttysack sorry your feeling so ill it is awful It took six yrs for lupus diagnosis was misdiagnosed with RA but to be fair they are very simililar in the syptoms it is very frustrating not knowing what's wrong my RA test was negative but another test came back positive can't think what it was but Dr said I have sle connective tissue disease and also was told I have fibro years ago I really do feel for you some of the drs do just make you feel like it's all in your head which makes you feel even worse and like there's no one to turn to I just kept pushing and pushing for answers and luckily got a lovely consultant and gp now who has all the time in the world for me good luck in the future really hope you get answers soon xx

  • Thanks so much Jammy for your comments. It really does help to hear other's stories too.

    I was at my GP tonight and she seemed more informed than usual! I think in general they don't know that much about autoimmune diseases apart from the very basics.

    I think she read up a bit more from my last visit a month ago and was so much more understanding and helpful, makes a difference, you come out feeling more positive with a wee bit hope again.

    I see the Rheumatologist in a month so I am all set to ask about the stronger drugs.

    So glad you get support from your doctors. C xx

  • Hi. Everyone, I test negative for lupus too but all my symptoms say otherwise. I did have a high ANA 1:640 once but because all other antibody tests were negative they said to ignore it?! My current rheumy has proved so unhelpful I have asked to be referred to St Thomas's in London where I shall hopefully finally get my diagnosis, and the right treatment!! Have any of you been there? Have you tried hydroxychloroquine? I've been on it for 9 weeks. My rheumy wants me to stop taking it because it hasn't helped yet but everyone I have spoke to said to give it six months so I am still taking it and hoping. Where are you all located? I am in the Midlands. X

  • Hi Annalouk

    Aside from my Rheumatologist at my local hospital, I also see the Prof and the Lupus team in City Hospital, Birmingham. They leave no stone unturned and I feel in very safe hands. Nevertheless, I have seen a different Doctor at every appt there and continuity is immediately lost whereas I always see the same Dr at my local hosp. Be very insistent and persistent until you feel that you are being taken seriously. Do let us know now things go. Clare x

  • Hi Annalouk,

    I am in South West Scotland and my Rheumy is in Greenock and Glasgow. I saw him just a few days ago and after another try with the steroid injections he is going to try Mycophenolate. He is not keen on me being on the steroids in increasing amounts for years due to side effects.I just hope I will be able to tolerate it as I couldn't manage the hydroxychloroquine unfortunately due to a chronic autoimmune liver problem which seems to be related to all this in me.

    I am very lucky to have such a good guy, although I am with him NHS,I have also seen him privately. Sometimes it is the best way to be able to have more time to talk through symptoms etc. and plan the best treatment.He is always so pleasant and positive and listens well.

    in the past I had a guy that just refused to treat me with anything due to the negative bloods, was very off hand and made me feel like I was moaning about not very much at all. Used to leave in tears as soon as I got out his office!!!!

    Will be really interested to hear how you get on at St Thomas's.

    All the best, C x

  • Mycophenolate was fine for my liver and actually improved the liver function tests, which means it controlled its inflammation. It takes about 2 months to really show an impact on the liver, although you'll see an improvement in stamina and other lupus symptoms from about 4-5th week (assuming you're starting at 500mg per day for few weeks, then up the dose).

    Give it a chance, it is the most tolerated immunosuppressant, so hopefully it will work. Good luck.

  • Hi Purpletop,

    It was thanks to you mentioning Mycophenolate to me here that I knew what the consultant was talking about last week.It is SO good to be able to share drugs, symptoms and experience as never up til then had I known anyone with Lupus and bile duct, liver problems.

    Three of my four sons are marrying in April, May and June, so the consultant thought it safer to continue with the injections until all those big events are over!! He is giving me one in a few weeks and another a month before the last of the weddings, then we will try the Mycophenolate. What you have said about it gives me more confidence. I have chronic gastritis too but take Nexium which generally keeps it fine, it has always been the liver problems which were worse than the stomach when I try new drugs.

    I get upset by many antibiotics but not Ciprofloxacin which is awful for many people, but the doctor explained it is the only one which directly works through the biliary system so it helps to settle the inflammation. I hope the Mycophenolate will work much the same in me, fingers crossed.

    Thanks again C x

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