Since getting diagnosed with lupus last month one thing has been really bothering me...
As bit of a back story I was diagnosed with RA a few years ago. Over the last 6-8 months I've been amassing a bunch of other symptoms which last month resulted in my RA diagnosed being changed to Lupus. But what I am confused about is this- I have been taking hydroxychloriquine for over 14 months for RA prior to my change in diagnosis. But it's my understanding that hydroxychloriquine is the main and best treatment for lupus so if so how did I develop symptoms of lupus so quickly whilst being on the recommended treatment? Has anyone else experienced this? It just makes me think my diagnosis is wrong.
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1. What dose of hydroxychloroquine have you been on. I started on 200 mg per day and that was not enough. Ended up steroids twice and then increased hydroxychloroquine to 300mg per day, and also introduced mepacrine is which supposed to work well synergistically.
2. Something else may have changed and is causing symptoms.
Previous to treatment, I found symptoms came on suddenly.
2019 joint pain, then after having covid earlier in pandemic, before vaccination available, a dozen other things or more in the space of a year. Covid did it for me I think, close family member had just died and my vitamin D levels were low when had covid.
I now have Vitamin D prescribed too.
3. I look at my neutrophil to lymphocyte ratio.
I divide neutrophils by lymphocytes and record this each time get bloods done.
I plot on a graph, time along bottom and notice peaks match flares.
N:L ratio was high before being on hydroxychloroquine and has now come down.
Hi. Your Dr I assume did all the necessary blood tests required for your lupus diagnosis? To answer your question, if you indeed have a new diagnosis of lupus, that is not an unusual scenario. Many of us have a diagnosis that morphs into another. Sometimes as we acquire a new disease, it happens quickly or it may take years or it may never happen. The meds that help the inflammation in our body for one disease does not PREVENT another disease from occurring: hopefully this is the case; but the real prevention is for the meds to prevent more damage to connective tissues and joints and blood vessels etc.. Your Dr May now require that you supplement hydroxy with another medication. I hope this answers your question.
hi there. As MrsMarigold asks, did your bloodwork show Lupus rather than RA or are you seronegative for both?
In my case it all started very much like you describe 13 years ago. It was sudden in onset with my menopause and GP only tested Rheumatoid Factor, FBC, ESR and CRP. And then the rheumatologist only tested for anti CCP so there was a lot of confirmation bias going on due to bilateral pain and minimal but palpable swelling.
Apparently Lupus and other rarer CTDs tend to cause unilateral synovitis - which I now have, but back then it seemed to be RA or nothing. My anti CCP was normal so I was diagnosed with seronegative RA with high inflammation and put on methotrexate, adding Hydroxichloraquine some months later. The joint pain eased up but other symptoms rapidly took over - mainly sicca, pins and needles, electric shocks, burning pain and Raynaud’s.
My GP referred me to neurology and they tested ANA and others first time 18 months after starting the dmards plus brief spell on sulphasalazine. ANA and others were “inconclusive”. Finally I relocated for family reasons and new hospital rediagnosed me with primary Sjögren’s by lip biopsy. But ANA high positive pointed more to scleroderma and so it carried on for some years off treatments I’d failed to tolerate.
Come 2020 new rheumatologist re-tested and a rare scleroderma antibody showed up and finally I was correctly diagnosed and treated for this. My diagnostic journey took 12 years to get right because apparently I’m also hypermobile so the skin tightening showed up differently. But my diagnosis is now 100% definitive and my rheumatologist says severe GI symptoms, joint/ tendon pain and swelling and Raynaud’s are systemic sclerosis and neuro symptoms and fatigue are Sjögren’s related. On Mycophenolate but if joints/ MSK pain gets worse I can try Rituximab. Pain presently v bad in left elbow so getting ultrasound tomorrow but feels like old RA although my consultant thinks it might be a tendon sheath rub unique to scleroderma. Hope my long story shows that diagnosis collecting is rather common for some of us.
For what it’s worth I knew I had systemic sclerosis and associated Sjögren’s plus hypermobile spectrum disorder long before my doctors were able to diagnose unequivocally last year. With being able to research ourselves, I do believe we know when the label fits and when it doesn’t.
Thanks all. I am seronegative for RA, no idea about my bloods for lupus. Although they did take a lot of tests before changing my diagnosis.
As well as hydroxychloriquine 200mg OD I take sulfazalaine 1g BD which I started a year ago and humeria which was started 3 years ago. (Initially diagnosed in the states where their medication regime is different to the UK). I can't take methotrexate. So I'm on a lot of autoimmune related meds as well as having my raynaurds and gord medicated. I just find it so frustrating. I work hard on my health - good diet, regular exercise, lots of rest, socialize and keep a check of my mental health and I take a plethora of pills I rattle each morning yet still my health keeps getting worse.
My gp has written to my rhuemy asking for more advice and support so hopefully that will change things. Whether it's the wrong diagnosis or the wrong medication. I really hope it gets sorted soon, I hate the uncertainty!
I think there are so many facets as to what can go wrong to the immune system to make it behave in a deranged way.
It is difficult getting to the root of it unless bloods show clear indicators. Don't think they know enough to know how to test it all.
Some people have blood indicators that make it clearer what symptoms to expect.
It is worth finding out what positive blood indicators they found (eg. ANA, anti-Sm, anti-ds DNA, Complement C3 and C4, antiphospholipid results).
The table in the link below, has a positive ANA test result as an entry criteria at the top. It then has two columns. The left scores the highest symptom and the right the highest blood result and when the higest are added together sees if the score is 10 or more.
It is the 2019 EULAR/ACR SLE Classification Criteria intended for use in research. There are classification criteria for other conditions too.
But this was not intended for diagnosis, only for research. Having said that, from this forum, it seems there have not been many seronegative SLE diagnoses since 2019 and some consultants it seems, have tried changing diagnoses if bloods go negative with treatment.
Guess what, yes, they then get worse again and risk organ damage. So obviously the system is flawed.
So at this level too, not everything is straight forward.
Another reason for us to know why a diagnosis was made, and to learn about extra tests that start to be used - hoping hard they find more comprehensive ones.🤞🙏💜
Meanwhile having myself no positive tests other than the ANA, and testing available being limited also for one reason or another, it was treatment I sort.
Hopefully one day testing will catch up, and be more reliable, in understanding every patient's symptoms and pattern of disease over the years. We are not there yet though.
I was diagnosed with SLE and Lupus Nephrisis in 1998.
I was taking Mycopheolate but changed to Methothrexatae, as my main immusuppresion drug. I also take hyroxy to minimise the likelyhood of flares, and prednisolone.
I hope you can get some clarity from your rhuemy, but do remember that we are all different and so working/talking/asking questions of your doctors, is I believe the best way to proceed.
Sadly Lupus is not a black and white disease so by challenging your docs and asking many questions and giving your opinion will help you to get to the best meds and doses for your body.
It’s quite a good idea at this point in your diagnostic journey, to ask your GP practice or your rheumatologist for copies of your bloodwork and their letters. This may help you learn and better understand their reasoning and also help you research more targeted treatments. Although many of the meds are interchangeable for our various rheumatic spectrum diseases - some you’ve mentioned are fairly specific for RA/ inflammatory arthritis. You may need to try another more systemic drugs such as Mycophenolate or Azathioprine or a biologic to get things better controlled. Find out what evidence your diagnosis was based on because it’s quite hard to get a diagnosis of Lupus for most in UK. This won’t have been changed on a whim. Usually it would either be your immunology bloodwork or histology ie biopsy rather than just guesswork on their part.
Being included in your specialist’s decision making process will help you accept or query this change in diagnosis. If you carry a specific antibody for Lupus for example then the disgnosis is likely to be right. Knowledge is key and you need to find out more information as prognosis for seronegative is often better and also it’s usually very hard to get a diagnosis of seronegative Lupus compared to seronegative RA.
Lots of good advice. The important thing is to develop the treatments that improve your life. It’s easy to say yet the names or the badges for the diagnosis can come later. Best wishes Kevin
I agree with this and im frustrated that hydroxy helped me despite furthering symptoms and yet I was told was not helping and I am the best judge of how I feel. I have no answers or diagnosis but told the doctors have done extensive testing (not clinical pictures as not seen, and I guess they mean bloods as no biopsies or anything) and they dont have the answers and could be rare. I do not believe this to be the case after years of symptoms inflicting me that are not rare, and believe simply that a rheumy stopped hydroxy and discharged me prematurely, as so ill after hydroxy stopped and more symptoms arose and has led me to this stage. I agree ,I want a diagnosis to know how to best help myself , I want a quality of life and the little relief from hydroxy was worth it. Doc told me you dont want to be on those dangerous drugs , high dose steroids helped much after short course too. I dont want to be on any drugs either but when it comes to relief of symptoms yes I do want the help. I would take treatment for life improvement over diagnosis though I would like that too but docs wont treat with helpful drugs without diagnosis which is crazy as they can monitor on drugs opposed to just leaving to suffer.
well said ,life improvement is what should come first.
I have both sero negative rheumatoid arthritis years later sle lupus .
I was on methotrexate then after butterfly rash etc hydroxychlorquine added
It wouldn't stop lupus showing itself and often we require a combination treatment.
Mines hydrochlorquine with methotrexate, hydrochlorquine works at cellular level slow acting.
Without it which I did as trial for consultant I developed lot bad antibodies with it there controlled I use sun block as indoor lights/ sun triggers my lupus alongside hormones stress.
Mines now overlap of rheumatoid arthritis
Sle
Raynaud's syndrome
Fibromyalgia
Etc
Seronegative rheumatoid arthritis means no joint erosion.
hi nice to meet you also I was diagnosed with fibro and palindromic rheumatism for when I was given a trial of hydroxy which was helping some but ive never been the same since they stopped them and its when things got out of hand. so my dilemma is were they helping (I thought they was and only took for 3 months or did they cause things to worsen which personally I dont think so but second rheumy stopped them and ive suffered many problems skin and muscle weakness and drooping eye since and much inflammation among other things. My mother had rheumatoid arthritis and I know her hands were the same as mine. my thyroid was affected and undressed ,well none of my symptoms have been addressed since and my quality of life severely affected. I am at a loss of what to do as all I ever get is blood tests and told ok despite clinical picture. I dread the summer for fear what it will bring. last week on a better day I went for a walk with the dog and blue vessels come up in my fingers that then bruised where this happened. I do not have or likely to get any diagnosis as healthcare poor here ,and last week when I said to doc hydroxy helped as did a high dose of steroids he just said you dont want to be on those dangerous meds and to meditate, they said they do "believe me" (I have pictures of all when not seen) but they dont know. well when you are not seen or monitored how can you know is my first reaction. I have been mindful to deal with stress and yet this makes no difference to symptoms as I was getting very distraught with all this. I cant answer for my bloods but clearly somethings not right and they admit that but say they dont have the answers and I fear thats because they only look at bloods and not seen a rheumatologist for 6 years or more but my fear is the health board im under, and im beginning to feel like my only option is to move which is just not possible in current climate so I continue to do what I can but its obviously not enough. it seems a blood test is all the answers I get yet the bloods yield no answers according to them. I also think maybe its an accumulation of different things if not one thing but not even a simple test like bp has been done for years and its a fight I cant win to keep at them as its just a brick wall I cant knock down. I fear things that often dont show in bloods as sadly im not seen by specialists or at least with any knowledge in this area, and feel destined to rot as bloods not giving them the answers 🤷♀️
I’ve been on hydroxychloraquine for the last 5-7 years since being diagnosed with Sjogrens Syndrome. I had blood tests done at the time for Lupus and they came back negative. However, I kept getting rashes on my neck, chest and arms that my Rheumatologist thought could be Lupus, but not the type that shows in the blood.
I started getting a rash on my right knee every winter about 5 years ago and after being told by my GP twice that it was Granuloma (I can’t think of the full name) I finally managed to get a skin biopsy done in January this year. My results came back showing I had Chillblain Lupus, which is a form of Discoid Lupus that only shows on the skin.
I’ve come to the conclusion that they put me on Hydroxychloraquine on a ‘just in case’ basis as I’ve been diagnosed with 3 other autoimmune conditions including Sjogrens Syndrome.
interesting you say a type that doesn't show in bloods re my previous reply to soul 22 as im not seen by rheumatologist or anyone and just bloods tested.I also had no ill effects whilst on hydroxy .thankyou for reply.
Hi there, I have both RA and Lupus. My bloods confirmed the Lupus after 2 years of irregular blood results. No rheumatoid factor in my blood tests although it became obvious that I had RA after about 5/6 years, fast forward about 15 years and guess what? Rheumatoid factor appeared 🙄 by which time I was being treated for both and had had my metacarpal joints replaced in my very twisted RA hands. Back then it was very unusual for someone to have RA without it showing in their blood.
So you may very well have both and on the upside, a lot of treatments crossover and are used to treat both. ( btw I’ve been on hydroxychloroquine 400mg a day for about 30 years with no ill effects)
“…But it's my understanding that hydroxychloriquine is the main and best treatment for lupus …”?🧐
Ref.: Hydroxychloroquine, HCQ
Careful! No it isn’t!
Whilst most dermatologists will agree that it’s a good treatment for CUTANEOUS lupus there are better drugs for other forms and manifestations of lupus.👆
Yes, it is complicated. Sadly.
You need a full medication and diagnostic review by a properly qualified consultant medic.
I dont know if have lupus most likely not but have had many symptoms a lupus sufferer has as they have sadly so many but whatever inflicts me it seems hydroxy helped and as worsened when stopped I am at a loss as to why . I was so stressed at one point wondering if it was all in my head but high dose steroid treatment has proved it is not and yet can get no answers.I am in agreement I need a properly qualified consultant.
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