Hydroxychloroquine : Received letter from... - LUPUS UK


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Christie22 profile image

Received letter from rheumatologist today ,

Immune system disorder because of positive nuclear antibody bloods but he doesn’t think lupus ! But not fibromyalgia which is the diagnosis given three years ago . These were registered as 1 in 80 but were taken when I wasn’t in a flare up . Double strand DNA negative .Has prescribed hydroxychloroquine for six ,months and I am to follow up on poor kidney function with GP.

I am not too bad at the moment but when in flare I have joint pain stiffness fatigue photosenstivity awful rashes with this headaches and my kidneys have poor function ...

Should I take the medication I still feel I am missing a diagnosis almost feel like alllowing the photosentivity to occur to have a biopsy .

Anyone else feel bemused by all this .....

23 Replies

If you take the hydroxychloroquine and it helps , it may point towards Lupus when you see rheumy again . I think they are wary of giving a definitive diagnosis until they are really sure. I did have mine confirmed by skin biopsy of a rash I had for a year and nothing else helped ! It cleared up quickly with hydroxy ..... I know it is frustrating for you , I had to wait almost 20 years for a diagnosis for my problems !! However from what you have described it does sound likely it is lupus !

Thank you for taking the time to email , it almost makes me feel like allowing the photo sensitivity to occur again so I can get a biopsy so frustrating .they seem keener to apportion blame onto the extreme life occurrences and stress in my life over last few years

MY wife was diagnosed with SLE at Guy's London just before christmas 2017. She has always had negative ANA DSDNA but abnormal c3/c4, crp, aptt, esr. It just shows that lupus comes in many forms and most of the normal screens dont always work. I remember seeing the agreed international criteria for diagnosing lupus and you have to get 4 out of 11 criterion. only one of these is dsdna / ana. Guys criteria do not focus upon dsdna / ana - If you are looking for answers go to a specialist in lupus like Guys addenbrookes etc

Hydroxy / steroids along with gaberpentine and occasional naproxen have made the world of difference to my wife - she has her life back.

Christie22 profile image
Christie22 in reply to jimbo1605

Thank you so much for this I know in my heart where this is it’s simply frustrating . I am pleased your wife has her answer and things now help her . I will use the medication and hopefully this will help it’s simply how to move forward really

Hello Christie22

As you know, anti-dsDNA is highly specific for lupus/SLE, whereas a positive ANA test is non-specific. - a more general indicator that your immune system is producing antibodies to attack your own cells. Just because you don't qualify for a 'lupus' diagnosis does not mean that you do not have a real, and potentially serious, systemic auto-immune disorder. Many on this forum have other diagnositic labels such as Mixed Connective Tissue Disorder, Undifferentiated CTD, Sjogren's, 'overlap' syndromes and so on. Most have spent a long time with unclear or changing labels.

The important thing is not so much to get the 'right' label - after all, these are only artificial constructs, our bodies don't care whether they fit neatly into a category or not - it's to understand just enough to have an effective treatment.

HCQ (and steroids) is used in a wide variety of systemic auto-immune conditions. It seems like a good idea to start there and, as your condition becomes clearer, to refine the treatment further. Keep a diary of symptoms - with pix if appropriate - so you can start to see patterns over time, and keep asking your rheumy questions about how s/he sees your condition developing. Hope it goes well x

Christie22 profile image
Christie22 in reply to whisperit

Thank you so much for a informed and supportive email , I’ll take those words and move on

I'm in a similar position to you and am currently into a 6 months trial of hydroxy. I was told fibro too, but now possible mild lupus/mixed connective tissue disorder. (At least I think that's what the rheumy said, but found it difficult to understand him!) I'm giving the hydroxy a try as it may help and if it does hooray. Good luck.

Christie22 profile image
Christie22 in reply to HedgeEnd

Hope you feel better soon and the medication helps it’s certainly has complex elements the reply’s I ve had from this post have been really helpful

Hello Christine,I have had a long fight to get anywhere with my symptoms seeing 5 rheumatologists over a number of years getting worse and worse until last December feeling really unwell the final one began ran a lot of tests and decided to treat me with hydroxychloroquine the name of my condition is still not certain but the treatment is working.Since then azathioprine has been added as hydroxychloroquine hasn't had enough effect alone.I am so glad someone has helped me feel better my doctor says my condition may never have a definite name I understand you wanting a name but I don't think current level of medical knowledge can deal with all the complexities of autoimmune disease trying to decide what was wrong with me prior to treatment led in my case to years of worsening symptoms.I hope you Will feel better on hydroxychloroquine , eventually you may get a name for your condition but I would say a better quality of life if your treatment works is what is most important.

Christie22 profile image
Christie22 in reply to jane1964

You talk with so much sense and wisdom that I am sure has been hard won bless you and I appreciate you taking the time to email

Hi Christie22,

I would encourage you to take your doctor's advice and begin the course of hydroxychloroquine as this should help with reducing your signs and symptoms. It is important to remember that hydroxychloroquine can take up to six months to exert its full effects. To learn more about this, click here lupusuk.org.uk/wp-content/u...

Below, I have included some information links which I hope you will find useful:

Pain management: lupusuk.org.uk/pain-managem...

Joints/Muscles: lupusuk.org.uk/wp-content/u...

Light-sensitivity: lupusuk.org.uk/coping-with-...

Kidneys: lupusuk.org.uk/wp-content/u...

Skin Rashes: lupusuk.org.uk/wp-content/u...

Much appreciated thank for taking the time to email

I have many of the same symptoms but I was diagnosed with sjogren's. Negative for Lupus but my Dr said many of the AI's share similar symptoms and I take Hydroxy. Although I still have flares it does help overall.

Christie22 profile image
Christie22 in reply to wsjkcj1

Thank you for that how were you diagnosed and what were your symptoms with this situation hope your doing ok

wsjkcj1 profile image
wsjkcj1 in reply to Christie22

auto-antibodies in blood work and a tissue biopsy of my gums because I had sores in my mouth. My symptoms at the time were hyperthyroid, dry eye, mouth sores and over all muscle aches. I'm unsure what wasn't positive for Lupus but my rheumy told me the diseases share many symptoms and usually when you have one it's possible to develop others as secondary diseases. Since my diagnosis I still get those same symptoms and now have some peripheral neuropathy symptoms and have been diagnosed with RA. I only take Hydroxy.

Christie22 profile image
Christie22 in reply to wsjkcj1

Ahh bless you I hope you feel better at times it’s tricky this isn’t it

wsjkcj1 profile image
wsjkcj1 in reply to Christie22

thank you! I hope you feel better also. It is tricky! I've talked to many people here and other sites seeking advice on all the different symptoms I had. I was freaked out with each new one that popped up thinking this one is surely going to kill me. LOL The best advice I ever received was to get as much rest as possible, try to eat a good diet and relax keeping in mind this flare will pass. :)

wsjkcj1 profile image
wsjkcj1 in reply to Christie22

I imagine in your situation you have a massive amount of stress. I believe stress pushes me into a flare more than any other thing. I'd say to try and manage it as best as you can with all you have to deal with.

Christie22 profile image
Christie22 in reply to wsjkcj1

Yes you could say that ,,,in many ways it’s easy for professionals to put it all down to trauma and stress I think that certainly played a part I honestly believe we have lots to learn about how psychological issues can affect our physical health ...onward and upward hopefully

Yes. Been taking for 30 years. Hope it helps. God Bless you. Nan

Ahh thank you not easy is it when at times even those close to you think you’ve a over active imagination not a over active immune system 😳

Hey Christie - Have you done a SLEDAI? Your rheumy should have - and you need to do it together at the time - rather then them fill a lot of it in without checking you agree with their opinion on each question. thecalculator.co/health/SLE... If you hover over the question it will give you more info on what it means specifically. Also take a look at the following which gives the NICE diagnostics for diagnosis, shared with my by Paul at Lupus UK months ago. academic.oup.com/rheumatolo...

Maybe just give Lupus UK a call and see if it helps? They're so lovely. It's not just for the diagnosed - it's for people unsure about their symptoms and struggling to get a diagnosis. All the best to you and yours. D x

Thank you for such an informed response . Sorry for the delay in replying I went to the dr was send into hospital breathlessness then blood results led them to believe I had a PE fortunetly not but my DDimer result was higher than it should be as is my eosinophils and mono . I feel so tired and foggy headaches too and the spots aka rash remains . The hospital al gave me my results and said I should get my dr to send me to my rheumatologist ...why is it so hard to get someone to understand this so I am still no further forward I actually think this has all been a flare not the drug issue at all and now they have stopped me taking it !,,

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