Is it common to be taking 400mg hydroxychloroquine without a diagnosis of SLE, and will it affect diagnostic tests?

Hello everyone,

I think my title says it all really - I've been taking 400mg hydroxychloroquine for about three years, I have multiple auto immune diseases but apparently Lupus 'luke' syndrome.

Since I have been taking it I don't blister in the sun anymore, and my face just gets uneven pigmentation in the 'butterfly' area rather than a red rash.

I've often asked my dr's to clarify what lupus like syndrome is, and I'm told it's having all the symptoms but no evidence of organ damage. Does that sound reasonable?

Is it common to take 400mg hydroxychloroquine without a diagnosis? Will taking hydroxychloroquine affect future blood tests for SLE?

Thank you, and I hope you are all well x

10 Replies

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  • Hi Anniesensi;

    I was diagnosed with SLE (Lupus) about 4 years ago. I also take 400MG of Hydroxychloriquime a day also, along with Folic Acid, Prednisone & Methotrexate ( 3 tablets of 2.5 MG every Sunday morning). These medication are for lupus. I also take 17 other medications for COPD & malignant hypertension.

    To answer you question there are other things that it can be used to treat. From what you described, you have all of the symptoms of lupus. However, Lupus will effect all of us different yet there are a few common denominators. Rashes/blisters ( they may differ from one person to the other) is one. I have rashes/blisters but, I do not get them on my face. I get them from my shoulders down to feet ( I get them in private places also). I have a rash on my right foot and I have not been able to wear shoes in 2 years. (Thus Coco from this Community gave me the name "The Barefoot Gardener"). I have been barefoot the whole time. I do everything and go everywhere barefoot.

    I have hair loss, again I have not lost any hair from my head but, I have absolutely no body hair from the shoulders down to toes ( no under arm hair, no chest hair, yes I am a guy, no hair on legs, feet, toes, and I have no pubic hair). The hair loss could be a combination of lupus and or medication.

    I would like to think that Our doctors know what they are doing and the medications they prescribe will help or at least help Control our medical issues.

    I have been told that Lupus will only show up on test when it is active or during a flare up. So you could have lupus but, not tested during a flare up or when it is active?

    I have some photos of my rashes/blisters on my home page if you would like to go there to see them.

    I hope you find answers soon.

    Tiras

    "The Barefoot Gardener"

  • Great name!

    The blisters I had were on my torso, the rash was on my face.

    So, if hydroxychloroquine at 400mg has been prescribed in the absence of blood test evidence, and I am told I don't have SLE - why am in on hydroxychloroquine with a diagnosis of lupus 'like' syndrome?

    Is it possible my Dr's think I can't handle another diagnosis and aren't telling me something?

  • I don't think the doctors would go so far as to not tell you. I live in the southeastern part of the U.S. In the state of Alabama, and here in the U.S. As long as you are competent, they have to tell you. If you are not competent they to tell the next of kin (wife, daughter, son, etc.).

    However, I will admit you do have some of the clasic symptoms of lupus.

    I actually have some scars from lupus blisters. The rashes do not leave scars.

    I do hope you get an answer. Just a thought, you may want to try another doctor when you have a flare up.

    A quick question, do you have joint pain?

    Tiras

    "The Barefoot Gardener"

  • Hi, gosh, so sorry I've taken so long to get back to you.

    Yes, I do have joint pain, but it has improved with hydroxychloroquine. Prior to that the joint pain was quite bad.

  • It may pay to go to a Rhuematologist specialist to confirm the diagnosis. Lupus symptoms in various combinations can be for other autoimmune diseases too. If your Dr is prescribing Hydroxy he/she must be doing it to control your symptoms but if you are concerned best to seek medical advice from a specialist - or go see your doc again and ask questions. Hope that helps.

  • Hi there! I was diagnosed with chronic cutaneous lupus (no systemic involvement whatsoever) thanks to a skin lesion biopsy, while the blood tests came out perfect. My (only) treatment is also hydroxychlorochine, since it is proven to improve lupus skin lesions, not just on organ involvements...

  • Same here,I get large discoloring blister like cystic acne on my head , face and back,but they are not pustules. Solid blisters that hurt. I too have not tested positive for the lupus markers but have been on hydroxy chloroquine for 4 years now,the derm dr has me on colcrys and dapsone for the skin blisters and I go in for steroid shots that they administer into the large blisters so they do not scar as bad.all the Dr's tell me it is some kind of autoimmune issue,which could be linked to my thyroid or is causing my hashimotos hard to say which. I also get purplish discoloration across the bridge of my nose and orbitals of my eyes that is very tender. Some Dr's say it is Lupus some are not convinced.

  • It sounds like they are treating your disease and it's working, which is great.

    It's often very hard to get a firm lupus diagnosis without a flare or it showing up conclusively in both your bloods and your symptoms. This possible means they think it's mild lupus or a similar connective tissue disease (hence the "like" word usage). These illnesses are often difficult to differentiate without conclusive bloods or a severe symptom like organ involvement. Either way it sounds like they are doing what they would for either a connective tissue disease or mild lupus so you are under the right treatment. That's what's important in the end, not which label you have.

    Oh and for test results - it affects them for inflammation etc because hopefully you won't flare and the medication will hopefully stop future damage but this would be a positive thing as it might mean you are in remission.

    All the best xx

  • I have had Lupus for 23yrs, then the diagnosis wasn't just on bloods but also on a group of specific other symptoms, butterfly rash, mouth ulcers, loss of hair, fatigue, pain n stiffness in joints etc etc. It wasn't until a while later that I heard the term 'mild lupus' This didn't mean that you only had mild symptoms (during a flare, they can be debilitating) but that there wasn't major organ involvment. I didn't have any rashes, but was prescribed Hydroxychloroquine to help with my joints and stiffness, along with azathioprine, and steroids. I was taken off it 7years later to prevent any eye damage. 2years ago my rheumatologist started me back on 400mg daily of chloroquinine because of all the latest long term results that were emerging, showing how beneficial the drug had been, not only in helping control symptoms but improving how the disease progresses in general. Also that any eye problems really are quite rare. This may very well be one of the reasons behind you being prescribed it. It does seem that more recently Doctors aren't as willing to diagnose Lupus as more mixed connective tissue illnesses are getting common/cross over symptoms. I had no major organ involvment for 15years and my rheumy was starting to mention mixed stuff when I suddenly developed interstitial lung disease (pulmonary fibrosis) , despite 15years of immuno-suppresants, and that put an end to that subject lol. Moral of this, see a Lupus specialist and don't be fobbed off, as far as I know the hydroxy shouldn't impair diagnosis but raise the question with a specialist. Good luck and all the best x

  • Thanks everyone, if I am on the right treatment either way then I don't think I can expect my dr's to do more.

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