I have had this for years. Now it is destroying my lungs, liver, spine, immunity' situation is somewhat dim. I recently moved this is, a narrow thinking region. Am desperately in need of a new rheumatologist, , yet unable to discover a doctor who, despite all the evidence & belief of the doctors I had. who will actively administer therapy & adequate medicatioons for the SLE. I am sicker & there is no one who will help me. I need suggestions how to deal with these folks before I get sicker (kidneys failing I have no immunity & I am in 24/7 severe pain). If there is a single peron who has ideas how to stop this now, I am in your debt & will listen to all suggestions. thank you.
Jerri
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Jerri
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I am awfully sorry about you and your condition. My mum was told for about 5-7 years here in the UK she didn't have Lupus, the results were always Neg for lupus, so how could she have it???!
Being a medic myaelf and mums interpreter I argued the toss off with numerous haematologists, rheumatologists, dermatologists... You name it!!! Until I had enough and transferred mum to a lupus clinic.
You will have find which is your closest lupus clinic (for us it's the Manchester Royal Infirmary) then contact your GP, express the fact you don't feel you are getting adequate treatment for your condition and require an immediate referral to that particular Lupus clinic.
Lupus will present as positive and negative with being an auto immune disorder, when it presents as negative it means it's in remission but you will still suffer from all its effects, most doctors will fail to see that and I am sorry.
Alternatively, if you feel there is no option, go into manchesters royal infirmary AnE and present yourself and your suffering and hopefully you'll be seen by a lupus doctor, or your nearest specialist lupus specialist clinic.
I'm sorry I can't help further, but do present your case and don't stick with doctors that don't challenge and believe in your illness.
GRRRRREAT REPLY👏👏👏👏👏👏👍👍👍👌👌👌👌👌! I think you're a hero....in you, your mother has a FANTASTIC patient advocate...I wish you could clone yourself & come be my advocate too...my journey to sero neg effective diagnosis & treatment has largely run along the lines you've advised: I'm at a brilliant regional teaching hospital's lupus & vasculitis clinic, and at the immunology clinic there too (thanks to the head of lupus there, I discovered my lupus is actually infant onset)
I would happily advocate anyone in desperate need for the correct answers and treatment.
Lupus is complex, there is no doubt about it and we are always taught to treat what we see and treat what we can diagnose and never see the bigger picture or the umbrella disorder it comes under.
Re.: Nice guidelines, find out what they are, and refer them to the people that challenge you ... Advise them that the nice guidelines are "GUIDELINES" that are general and not person specific, we are treating individuals, not mass population.
Mum has been ok with no pain for 6/7 months now and all due to me changing her medication to natural medication and supplements (miraculously it worked), I really extensively researched it to ensure they would work. Also the issue I face as a family member is that brother (18yrs) suffers with severe spastic quadriplegia cerebral palsy so mum has been his main carer for 18yrs, only now managed to get her some help! It's been a tough 2/3 years.
You're a star! Am wishing you all every possible best wish🍀🍀🍀🍀🍀🍀...your family is an inspiration
Your mother's story fascinates me...I'm sort of doing the reverse, in some ways: mostly I intensively lifestyle managed my version of infant onset lupus until my late 50s 4 years ago when the progressive debilitation got bad enough for the NHS to finally realise lupus was underlying my decades of dodgy health & emergencies. Since that re-diagnosis most of my Drs & alternative therapists have been saying that, had I not been so conscientious re diet & supplements & pacing & exercise etc etc all those decades, I'd be in even worse shape now. Instead, thanks to the daily prescription SLE meds in the treatment plan that's evolved over the past 4 years , I'm feeling better now than I have since my 30s....am not jumping to any conclusions...am keeping my eyes & ears wide open....am cautious re the risk/benefit ration of flipping everything I do to manage my chronic health issues...and for sure I continue ALL the lifestyle management that has stood me in good stead all my life....but at 62 I am acutely aware that my chronic neuro cerebral issues especially mean my years of being capable & effective in the role of my own patient advocate are numbered....eeeeek, I think to myself: best to take things 1 step at a time....
I think you've done a fantastic job, you are clearly an inspiration to so many other SLE sufferers out there that think their days are numbered when they are only in their twenties.
The more and earlier you look after yourself, the more delays you will have in "maturing" your lupus.
I have opened a forum post so people can share their experiences on some alternative pain relief options I've mentioned in a few posts.
They have been the godsend to a lot of people with lupus/fybromialgia/RA and general inflammation.
My aim is to bring a new way of treating lupus that doesn't necessarily involve so much pain medication (which could be deadly in the end)
I'll check your post out ASAP...am so glad you're here (do you have your own blog too?)
Thanks for all your kind words...the reality of what you're imaging about me was brought home vividly today at my first appt with a Sr physio @ the same hosp as my lupus & vasculitis rheumatology clinic: during our hour together he TOTALLY endorsed how I'm managing my progressive multisystem debilitation without any daily prescrip pain meds (only paracetamol & mefenamic acid occaisionally....and this almost a 2 decades after had been told I'd be on high dose prescrip NSAIDs & analgesics in a wheel chair for the rest of my life)...YES, this can be achieved....but, no matter how resourceful & conscientious we are, my feeling is that a degree of luck is involved....and I do feel v lucky!
There is an excellent department in Bath hospital that offers Lupus care and support. You can email the nurse Sue Brown, maybe they can give you some pointers.
Yes, the Mineral Water Hospital in Bath is a leading hospital in this country specialising in rheumatic diseases (and lupus). Sue Brown is an excellent lupus specialist nurse. I'm confident that she would be able to help!
I agree with Emt1mb. Rheumatology departments or even top drs at Lupus Unit (in my experience) are pure disgrace except very few enlightened ones. You (Jerri and mother of Emt1mg) are probably the fine examples to prove the case. I am amazed by Lupus UK not doing anything to rectify this disgraceful situation for minority patients who simply wouldn't make "Lupus-related" antibodies. I often think seronegative Lupus is just as bad (potentially, far more hazardous given the sheer ignorance perpetuated amongst drs even top drs in Lupus?) - what concerns me most is nobody seems to be taking this very seriously? More research needs to be done in this area!!! Those antibodies, I am not sure if they are direct culprits for destruction or they are just disease markers. Leaving you dead without treatments is just so so so wrong!! When you see new ones, it is worth asking if they deal with seronegative patients. Take care
I too was negative for years so misdiagnosed with RA. I don't know your area but I agree with EMT, you are entitled to second opinions and referrals if you request them. See NICE guidelines. I live in the south and go to the Lupus centre London. Joined up thinking when it comes to your care. I had to pay for a one off private consult then continued NHS. It got me on the right pathway. As an exnurse not PC but needs must. Xx
Has your consultant suggested an alternative diagnosis as the cause of all symptoms? Are you currently on any form of treatment at all?
Whereabouts are you living now? I can provide you details of any lupus specialists who are nearest to you so that you can ask for a referral to them.
I'm with everyone else. How can they leave you with a disease that is destroying your organs? It goes against everything the medical profession is trained for - diagnosis and treatment are surely a fundamental tenet?
I was diagnosed and treated for seronegative RA in 2011 despite having only a weak positive rheumatoid factor but clear synovitis and a high ESR. Also for Hypothyroidism for 12 years now despite being only borderline at the time. I have a lot to thank my GPs for with both.
But now they both agree that I probably do have seronegative Lupus but my rheumy and his CT professor colleague disagree and say that lack of organ involvement (I have liver troubles, a large kidney cyst and have had pneumonia and arrhythmia this year) mean that it can't be lupus. Apparently by now as a post menopausal woman I would have organ damage. Autoantibodies are equivocal but my neurologist (I pushed for a referral) did at least find paired O bands in my cerebral spinal fluid showing some kind of systemic process is occurring. This is broad and includes Lupus, Vasculitis and Scleroderma but not RA interestingly.
I am only on a low dose of Prednisolone now having failed to tolerate four conventional DMARDs. Very allergic.
They should have you on Mycophenolate I feel as your kidneys are diseased. Makes my treatment seem positively enlightened - although the reality is otherwise. Shocking. You don't say whether you are UK based? I hope you find a good lupus clinic as others have suggested. We are shortly to move too to an area with a small but supposedly enlightened rheumatic diseases centre - I'm crossing my fingers tightly they are what they profess to be.
Jerri - There are no "magic bullets" for SLE. Every doctor you visit will basically do the same - order labs, prescribe steroids, and make another appointment. We've been "cursed" with a disease that's been around forever and yet, few understand what it really is and does. I've had it for 4-1/2 years. I tried the steroids but they made me sicker than I was, and I won't take them because of the side effects. I have MDS, ITP, SLE, etc. My labs yesterday were lousy. Platelets dropped 22 points and I had a low grade fever. Never had that before - something new. My gums have started to bleed as well. I told all of this to my hematologist. He said the fever may be a "virus." That's the term doctors use when they have no answers. Stick with a doctor you feel comfortable with - and stop waiting for a magic cure. There are none.
I too have sero negative lupus. It took so long to find a rheumy who actually knew how to treat me. The first one I saw said to sounds like lupus and even though she markers where abnormal be refuses to diagnosis because my ANA was negative. But even if you look at the lupus website it says that like 6% or something will have a negative ANA. But still a lot of doctors refuse to believe it even when you are presenting with all the physical symptoms and showing inflammation in your labs. Anyways I was left being treated by my gp who knew there was something desperately wrong. Then after about a year of it continuing to progress quickly she sent me to a new rheumy. Who did say yes you can have SLE without a positive ANA and said I needed to be treated by a specialist. Well he was 3 hrs away from me and then he cut his working days. Seemed like he was retiring soon, so he quit treating me agressivly and when I would get sick would say go see your gp. I have been so thankful for her as she has treated me, researched and consulted with Lupus clinics to try and help me. And then finally now about 4 years later of things just getting steadily worse she has found me a rheumy who is really good. It seems the biggest thing is most do them don't like to admit that auto immune conditions don't make sense. My current rheumy says that you can't always go by the book because we don't have all the answers about our immune systems and a lot of times it's more complicated then that with overlapping diseases causing our labs to not show up correctly. My blood has been abnormal for years so they haven't known what to do with me. But there is hope. Keep looking for the right specialist who will truly want to care for you and listen. My disease still seems to be progressing but the treatments he has me on make it livable most days. No I'm not functional or able to live the life I used to but feel blessed and greatful for what I still can do. I do feel like this disease and the treatments are shortening our lifespans. So I try to make the best of each day and treasure the people in them. Right now I'm on biologic Benlysta infusions which have made a huge difference in keeping quite a bit of the symptoms down, as well as prednisone and NSAIDs. We were hoping to be able to taper the pred after the infusions started working but so far everytime we try something happens to make me flare out of control. I fear this last flare had damaged my heart some how because it's been 3 months now and my heart rate won't return to where it was and my chest pains and shortness of breath has drastically increased. But my point is there is hope, the Benlysta has been a huge thing for me and it's the first new lupus treatement in over 50 years. And I've been reading about some new treatments that are getting close to approval that have been in the works for the past 15 years. I think a lot of it is finding what can help you the best to get a few more years down the road until they find something even better. Hopefully eventually they will find something to treat us with that can help us live mostly normal and minimize damage. Hang in there and keep advocating for yourself. I know it's really hard but you will find the right specialist eventually.
I have had lupus for 20+ years and 5 years ago my ANA became negative, but I feel EXACTLY the same as I have for the last 15 years. It's only because I've stayed with the same GP & rheumatologist for so long that they know me and believe what I say about how I feel.
My heart goes out to all of you who are struggling to make yourselves understood and get treatment for seronegative autoimmune disorders!
I'm having trouble understanding the health care system in the UK as I live in the States. It seems to an outsider to be a very inefficient system for getting care for people with lupus/RA.
Hi Jerri, Your post has really upset me, I feel your pain, I know youve had enough. If I had a magic potion I would send it to you. What meds are you on please? Have you tried anything natural? Are you prepared to try natural? I have heard that Turmeric and black pepper mixed together has been known to help. I did try it, but then I stopped. I asked my Rheumy if Turmeric helps and she said she wasn't sure but she has heard a lot of people with Lupas are trying it. It must be taken with the B Pepper as this helps the absorption process. You might like to google it.
I'm sitting here in pain to but by the sounds of things, nothing like yours. Even go and see a Natropath if ur able. I hope you have a supportive family.
I really hate to hear of your SLE. I have RA and SLE both seronegative. It was a battle for me to get a Dx of seronegative RA, 3 years later, SLE joined the ranks for me to battle. I have little knowledge of your NHS, here in the southeast corner of the US, I waited 7 weeks to get an appointment with a Rheumy and had to drive 120 miles to the appointment and (it felt like) 1200 miles home. But this was a lifetime ago, 1980ish. No one EVER said "They are very advanced in autoimmune disorder treatments in Alabama" I promise you I am not exaggerating, however, we have come a long way.
You have my sympathy, because I, like so many others know the pure hell you go through just to prove yes, you are sick, very sick. Then, it takes what seems like an eternity to get them to treat you, not to mention the time it takes the meds to start working. As you can probably tell, patience is not my gift.
I do not mean to be a Debbi Downer, but reading your post and others like us, I guess I go PTSD to the 3-4 years of trying to be a mother to my 3 boys, wife to my husband, work full time. It was a very bad, long nightmare. I was in my 20's then and I, being the strong (read hard headed person I was then, I got through, and you will, too. Autoimmune disorders aren't quiet the mystery they used to be. (Thank the gods). There are several organizations you can get plenty of useful info from, The Arthritis Foundation is one, Good luck to you along with hugs and loves
With all the other diseases that I have developed over 4 years that "join" SLE, I only see a hematologist and my PCP. I had no luck with rheumatologists. I tried 3. They read the file - talk to you for a bit - and really are helpless. A decent, compassionate hematologist who has a caring office staff is what you need - more for your psychological health than your physical health. I have severe ITP now and have to be more closely monitored. I get copies of my labs in a few days after they draw the blood, and I am well aware that the SLE has hit my kidneys and Lord knows what else. I learned what the numbers mean, and I monitor them myself, along with my PCP. Since there is no cure and no real treatment other than to be inundated with steroids that can cause other issues, the TLC helps. Can you seek out a good hematologist that actually appears to care and talks to you? In the US, we have several, but I've been with the same one for all this time. We laugh at my illnesses and my husband and I and my doctor try and guess the ITP numbers. They go up the "ladder" and then fall again. But that's me - and I have accepted it. The bruises from the Coumadin and the ITP are really ugly, but I've accepted that too. I play tennis (or make sure I am out on a court) at least 3-4 times a week. It's very difficult to get moving, but when I do, I know I can do it! You must be active in order to fight the SLE. Are you??
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