i came on here back in june to talk about how i was diagnosed with SLE with only a positive ana and clinical symptoms, my rheumatologist at the time said even if my further blood tests came back positive this is most likely the diagnosis since lupus can take forever to show in the blood work and i had enough criteria on the lupus criterion chart to classify the diagnosis as lupus and so she put me on hydochloroquine right away. well low and behold my complement levels and anti dna test came back negative, did an ultrasound of my hands and that was clear too. at my three month follow up the doctor took me off my hydrochloroquine which was actually helping me A LOT to function properly, and is now saying its not lupus. Im very confused and not sure where to go from here. since being off the medicine ive had pain in my hands every day as well as back pain and fatigue along with mouth ulcers coming back. Im very confused and worried and im not sure where to go from here so i was wondering what you guys may think. Im 22 years old and feel like im trapped in someone elses frail body, ive had to ask my work to let me work remotely part time instead of full time in office because my body could not handle the physical strain. should i get a second opinion? is my rhuematologist correct for taking me off the medication? just any insight would help because i feel so trapped.
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I wasn’t diagnosed with lupus but something else and given hydroxychloroquine which helped but see another rheumy who took diagnosis away and hydroxychloroquine and I’ve worsened in the 2 years since, though would I have worsened anyhow 🤷♀️ Did they not say what they thought may be causing your symptoms if not lupus . Sorry I am in no position to give advice, but I’d ask for answers as to why you have these symptoms then, I would be inclined to go for second opinion, it’s no help at all to just brush you aside with ongoing symptoms.
Its difficult being in Limbo when you know you are ill and no diagnosis. I too had all the symptoms including a stroke a d TIAs and other autoimmune responses plus a genetic history of autoimmune issues inc siblings. It took years to get a definitive diagnosis. I moved and the dount raised its head again with a new consultant because a blood test result did not fit his idea of lupus profile . Thankfully the team saw the need not to accept a blood test against all the evidemce. So my advice is to persist and get a second opinion. Research who you want the second opinion with and consult with your GP. Hope it gets sorted.
Thankyou yes it is difficult. I know I’m not alone e with others including yourself sharing experiences which helps (sadly).
Genetic testing is next step I think neuro is looking at doing. I need a new gp which is my first step after all this covid , but darent change at moment and go not in my corner but I will persist, I have no choice but to given things but Thankyou for that 🙏
This must be so frustrating and concerning. Was it the same rhuematologist or two different Drs in the same department. I've had two out of four calling my symptoms Lupus like (including dermatologist) and moved from infliúginning a year ago. Without them and steroids I would be like yourself.
I have +ve ANA and the usual symptoms of joints, fatique, mouth ulcers, photosensitivity, sicca, malar rash. I've never had raised CRP etc. When my joints were scanned there was little signs of inflammation but they were very tender when squeezed (11 joints). So we appear to have a similar presentation of AI disease.
Interestingly the new EULAR diagnostic tool only has +ve ANA as prerequisit blood test then there is a scoring system based on blood / symptoms.
I would write a well measured email requesting to understand the rationale for withdrawal of medication given that you are now starting to suffer again. Alternatively, phone the specialist nurse and request support, follow. Make a delightful nuisance of yourself. Hope that helps a little. x
The rheumys were colleagues at same place, I made mistake of complaining and think I got payback 🤷♀️
I have no rheumy now I was promptly signed off but luckily through ent and facial specialist have a neuro working on some bloods checking for other things.with things worse than 2 years ago and all initial tests I have to move forward and would make a nuisance of myself if covid didn’t appear 🤷♀️
Hi A, I’m sorry this happened to you. I have normal complement levels and neg Anti DS DNA, and still have Lupus. It took me many years to be diagnosed. I had severe flare around age 30 where my WBC’s went down to .9 and I was very sick. Then I had 2 different occasions where I had fever for about 2 weeks without any other symptoms. Then in 2007 I had a severe flare where I got arthritis in my hands, elbows and feet where I could not walk for a year. I had a full Rheumatological work up and all blood tests were negative except for low vitamin D. The pain finally resolved in 2008. In 2013 I was working as a triage nurse in a OB-GYN office and the arthritis came back accompanied by severe muscle pain and weakness. And I developed a rash on my face and neck. An NP I worked with did a rheumatology work up. I had positive ANA and anti RNP autoantibody. Everything else including the complements were normal. I then went to see a rheumatologist. Due to my history of joint pain, muscle weakness, mouth ulcers, rashes and I’d had 2 bouts of pleurisy, I was diagnosed with Lupus. Hydroxychloroquine has been a miracle drug for me, has helped the joint pain and muscle weakness. Your rheumatologist has to know that Lupus does not cause erosive arthritis and would not show up on X-ray imaging. I would advise keeping a journal of all of your symptoms and photos of any rashes. It is a long haul for many of us. I had symptoms starting in my 30’s and wasn’t diagnosed until my 60’s. It’s unusual for diagnosis to take as long as mine did. I just kept living life as full as I could. It was a relief when I finally got the diagnosis because you begin to think you are crazy when Medical professionals keep telling you nothing is wrong but you hardly have the energy to function. I have been a nurse for over 40 years and still had this struggle and believed them when they told me nothing was wrong. I was always envious of people with boundless energy. You take care , and I wish you the very best in your journey. Keep bringing up your symptoms at each appointment. You know your body better than anyone. ❤️Nan
Thankyou nan 🙏 you hit the nail on the head, I’m envious of normality I’m confused by my changes in health which when I look back has been plagued for many years but only now worsened look for real answers.
Wow such a long time for you, how hard that must have been. Yes you’re right we know our own bodies and when well you take body for granted you live in it but over years I’ve been aware of living in it, I’ve noticed and felt body daily with symptoms and I didn’t beforehand is how I can explain it🤷♀️ Yes I keep photos and diary, it’s the best advice I was ever given on this journey. Yes I’ve been through thinking I’m crazy and now I just take these little steps to hope I get a diagnosis of whatever 🤷♀️ It is. I with total respect hope it does not take as long as yours and I thank you for replying and wish you all the best . Take care too 🤗x
Your situation is sadly not uncommon. These illnesses are very difficult to diagnose and the medications come with significant side effects. It would help if you described your symptoms and labs in addition to the positive ANA. Did the doctor say she would watch you continue to watch you? People’s illnesses often evolve over time.
Thank you for your replies everyone! I saw my new doctor yesterday and she put me right back on hydrochloroquine and ordered blood work again. I got some results back today and my ALT (liver enzyme) and Protein and rbc in urine is all elevated... im really worried i now have some kind of inflammation in my organs because i was taken off the medication by my other doctor. I appreciate all your help and will be spending time today replying to everyone ❤️
Hello. I am just catching up on some posts that I had wanted to reply to sometime ago. I am very glad that you are back on medication. I would advice in future to document your symptoms. I struggled to get a correct diagnosis back from 2013. I wasn't listened to or taken seriously. I kept an notepad and jotted down my good and bad days and symptoms. Temp when it was low grade fever etc. I also took photos of my skin issues. Rather than keep them on a phone, I got them printed off and took to a private second opinion appointment with a lupus expert - he said he hadn't seen a real photo for years but by the end of my hour they were spread all over his desk and he was constantly picking them up and looking at them as I was talking. You need all the evidence you can get. Happy to help in any way that I can. I can totally relate to diagnosis struggles. Best wishes, Wendy
I do have a rash which i showed photos of to my new rheumatologist yesterday, she put me back on hydrochloroquine and ordered more blood tests. I just got some results back from the blood tests and for my kidney function my rbc (erythrocytes specifically) and protein levels are elevated as well my live enzyme ALT is elevated. Does this seem like there is now involvement with kidneys or liver?
Liver involvement is very rare in lupus. Without highly elevated AST and ALT, autoimmune hepatitis is highly unlikely. Elevated ALT can also suggest muscle breakdown as well.
Renal involvement would certainly make me more suspicious of SLE. Kidneys are the big red flag for lupus or some sort of vasculitis. How is your creatinine? Is it elevated? Or are the urine studies the only thing that has come back abnormal thus far?
My creatnin is fine the only thing elevated is blood and protein in my urine and ALT. My first rhuematologist took me off hydrochloroquine so im wondering if it because of that since none of these tests were abnormal before. My new rheumatologist put me back on the medication yesterday but the tests were done yesterday right after my appointment so none of the medication is in my system. Is it possibly just inflammation?
Thank you for your response! The rashes are more like hives and they come and go so my rheumatologist doesnt see it as a concern to show my derm since it most likely wont be there when i go to the dermatologist. My new rheumatologist who i saw yesterday for the first time said i clearly show signs of a connective tissue disease with the most overlap with lupus so she put me back on hydrochloroquine, ive just never had abnormal kidney or liver tests prior to this so im wondering if being off of the medication because of my previous rheumatologist may have made things worse. Also is inflammation in the kidney not the same as lupus nephritis? Im assuming my liver enzymes and urine results are elevated due to inflammation?
It could be any number of things. I think if HCQ was working then I’d focus on that and get a diagnosis after. I think KayHimm alluded to the fact that these things are hard to diagnose. But not many things effect the kidneys. I have SLE. I get blood and WBCs in my urine when I’m not feeling well. My kidney function is only now showing signs of declining. My rheum keeps a close eye on my renal function. Unfortunately, I see a nephrologist appt in my future. I had pretty much all the other classic signs of lupus and only a positive ANA. I do have persistent lupus anticoagulant though. Never had a positive dsDNA. Rheum still checks it every 6 mos.
May I pop in with a question as you appear to be very well informed on this and I am a relative new comer. At present (with symptoms evolving over the year) I am +ve ANA with small joint involvement, fatique, malar rash, photosensitivity, mouth ulcers (new) some diffuse hair loss and told UCTD as couldn't be Lupus as kidneys not involved. I am on HYDRO which is great but am concerned about level of monitoring. They have also mentioned mycophenolate mofetil if my photosensivity can't be contolled with the HYRD. How often in your experience would you expect your kidney function to be tested? Hope you don't mine me asking.
Just catching up on a few posts that caught my eye a while ago, but I hadn't got around to replying. Hydroxychloroquine isn't monitored with blood tests, it is considered a safe drugs for the vast majority. You MUST get your eyes tested annually, as it can cause a toxicity in your eyes, in which case you'd be advised to stop taking it immediately. Hope this helps. Oh and if you took MMF you would need bloods monitored. I've been on MMF since 2016. I think from memory I had weekly bloods for 4 weeks, then monthly. After a couple of years and no issues, I'm now only every 3 months. Best wishes, Wendy
Ah, thank you, Yes, HYD is regarded as safe. Sadly, since posting I have had an horrific time of it - with stomach issues. I hadn't realised how swollen I had become until today. I couldn't feel my ribs as my whole torso was so distended. I have now been off it for 5 day and can not only feel my ribs but my waist/ abdomen has shrunk by inches. Just dreading that I might not be able to tolerate it. This will be my third cDMARD!! x
Oh my goodness. You poor thing. Who's monitoring you for this? Hopefully your rheumy is on the ball. Make sure you stay on top of this. My best wishes. Wendy
GP is running liver tests and we are just allowing the tummy to settle down. Luckily it has and I can now enjoy a glass of wine. Long term!! It will be up to the rhuemys to know if this is something we can deal with or whether HYX is out. So very dissapointed. x
Good news that your kidney function is now good! I agree with memory and brain fog being a problem. I honestly feel that it is a time robber as well! I look back at this year with some dispair as I have achieved nothing bar existing!!
I was a little concerned when the registrar said that didn't have Lupus cos kidneys invovled. So not my understanding of Lupus, I think as a member of the forum kindly pointed out that it affects about 60% of Lupus sufferers. Since, I don't appear to have symptoms of any other CTD bar sicca it is all rather tricky and don't want to find myself with undetected kidney problems later down the line. I've had 3 urine tests for protein. I abnormal, I borderline and I OK. Do you think I am being over anxious or right to want them to keep an eye on it? Uh! I hate these diseases if for no other reason that I suddenly feel like a hypochondriac (seemingly a very common feeling!!)
You have been very proactive - hats off to you. xx
It is sadly reassuring to know that I am not alone in the existing phase. Let's hope that we get more into achieving. It has, in all honesty, made me a little depressed. I wake up feeling worse about all this in the middle of the night. First thoughts are, drat amd more drat.
Still, winter pansies are always such a welcome sight. xx
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