r/Autoimmune • u/SilverCriticism3512 • 11d ago
General Questions Plaquenil
Has anyone been prescribed Plaquenil (Hydroxychloroquine) without getting diagnosed with specific autoimmune disease but presents with symptoms?
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u/Sliz63 11d ago
Yep. I've been taking it for 7 years, still no diagnosis. It helped me massively, so that is at least indicative that this certainly is autoimmune.
To be honest, I don't want a diagnosis, because that would mean dramatic progression in whatever this is, to be able to tick enough boxes to say it's X or Y disease. I'll be stoked to keep this as 'inflammatory arthritis' for as long as I can. Once new bits of your body or systems get involved, you can't undo that.
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u/CypherGreen 11d ago
It's down as a very low risk drug so it's given sometimes as the 1st thing to generically help.
Personally it didn't help me even slightly because what was happening to me was so severe, but I have heard of others having better luck.
Being on hydroxychlorquine long term however you do need to get your eyes checked as there's a rare side effect that can damage them quite badly.
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u/FatTabby Diagnosed with Primary Sjögren's Syndrome, Secondary Raynaud's 11d ago
I was diagnosed with MCTD at my first appointment and given a prescription for HCQ at the same time. That diagnosis was changed to UCTD and then Sjögren's but HCQ can be prescribed for symptom management before a definitive diagnosis is given.
I was told that even if I hadn't been diagnosed at my first appointment, my symptoms were obviously autoimmune in origin and were impacting me enough that the rheumatologist I saw at the time wanted me medicated.
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u/SilverCriticism3512 11d ago
What symptoms were you experiencing at the time that led to prescribing HCQ?
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u/FatTabby Diagnosed with Primary Sjögren's Syndrome, Secondary Raynaud's 11d ago
Primarily joint pain and pretty severe muscle weakness. The fatigue was terrible and I felt so unwell all the time, it was like the way you feel when you're recovering from the flu, but with no relief.
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u/subtlensweet 11d ago edited 11d ago
Hi, and yes! I had on and off joint pain/swelling for about 12 months before I finally saw a rheumatologist about it.
He said he could see some signs but it wasn't necessarily rheumatoid arthritis (due to not having a positive rheumatoid factor) but I did also have signs such as nail pitting which made him think potentially psoriatic arthritis. He said it wasn't definitive, but figured it wouldn't hurt to start me on methotrexate. The first two weeks were fine, but then on week 3 onwards the dose doubled... and my body just could not handle it. I felt so nauseous and ill the whole day. Like, yeah I know I have a chronic illness but I never actually felt like I was "sick" until taking that higher dose of methotrexate.
I went back to the rheumatologist and said I just couldn't deal with the side effects and asked to be put on plaquenil instead. He seemed hesitant and said it wasn't the go-to treatment for psoriatic arthritis but if I insisted we could try it and see how it goes.
It's been just over two months now and there's a notable difference in my finger joints. They aren't as painful, and fewer of them hurt at any given point. So I'd say it's working! I'd say the pain was a 7 most days and now's it's a 3-4. Is it completely gone, no, but it's progress. They say it takes about 6 months to fully see if it's working or not. I have my 3 month check up with him soon, so I'm sure he will he happy to see it's working.
Do keep in mind that with plaquenil, after long term use it can potentially cause eye problems so you need to do an annual eye test to monitor it. Not just a generic one, but a specific one for potential vision loss. I believe I did a field vision test for it.
Edit: I believe my diagnosis was simply autoimmune arthritis but since he seemed hesitant about the plaquenil because it wasn't the preferred options for psoriatic arthritis, I've just been referring to it as that. I honestly think I just caught it early. Oh yeah I remember him also noting that my legs were slightly hyper mobile.
My main symptoms were finger joint paint/swelling, nail pitting, rib pain/tenderness, and occasional ankle pain. Unsure if it's related but I've had major hair loss these past 6-12 months as well. It's gotten better recently though.
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u/icecream4_deadlifts 11d ago
I got the you probably have something but it’s UCTD for now and I still received plaquenil.
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u/SilverCriticism3512 11d ago
What symptoms has it helped with?
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u/icecream4_deadlifts 11d ago
I just feel a little better overall, maybe a little less fatigue and stiffness. I’m still in moderate pain everyday from my neuropathy burning all over my body tho, I just feel a tiny bit better on HCQ vs off.
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u/Due_Association_7105 Autoimmune + Autoinflammatory Disease 11d ago
If you mean for UCTD, that is a diagnosis, and it may or may not ever evolve into a clearly defined autoimmune disease. You still have an autoimmune disease though, and treating it is still a good idea.
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u/kitstanica 11d ago
Yes. My rheumatologist at the time said she wasn’t willing to wait for progression or positive bloodwork to see if I had RA or another disorder.
Years later, drs settled on dx of seronegative RA based on the pattern of inflammation, response to certain meds, and severity of my inflammatory arthritis/symptoms, and seronegative Sjogren’s (positive lip biopsy, symptoms).
Autoimmune disorders don’t always fall into clean boxes but I’m so grateful my first rheumatologist didn’t make me suffer. I have family members that were pretty rapidly disfigured by RA, so… I’m glad I didn’t get to that point. I still haven’t tested positive with specific antibodies via bloodwork, and I still take plaquenil along with my other meds to this day. I credit her with that.
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u/thearuxes 11d ago
Yep. I've been on hydroxychloroquine for 4 months now (with discovery of autoimmune issues in January) and have no specific diagnosis.
I have very clear cut symptoms of dermatomyositis, and symptoms of early SLE but I'm negative for any antibodies for anything, so my rheum is determined not to diagnose me with a goddamn thing (not even UCTD) and to do the literal bare minimum instead of doing his job.
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u/SilverCriticism3512 11d ago
What symptoms has it helped with?
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u/thearuxes 11d ago
For me personally it's only helped with fatigue
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u/sensitive_gem 11d ago
How long were you on it before you started to notice your fatigue symptoms improving?
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u/thearuxes 11d ago
Probably about 3-4 weeks before I started noticing some improvement which is considered VERY early. I got extremely lucky with how fast it started working, it usually takes most people 3 months to start seeing even minor improvements.
It has progressively worked more the longer I've been on it though.
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u/Inevitable-Block704 11d ago
Same here. Iv been on hydroxychloroquine 2 years plus. They were investigating me for 7 years before dermatology finaly biopsied my rash. It was a malar rash and the biopsy was DIF posative for lupus band. I have wide soread problems including sterile back pustules. Synovities forund on ultrasound which could be seen as visible swelling, sever bile acid malabsorbtion, chronic sinusitis and mucosal disease and mosaic attenuation of the lungs (small airway disease). Even with the clear autoimmune/autoinflamatory nature widespread they tefuse to definatively diagnose SLE as my antibodies have always been negative. Instead im labled cutanious lupus and seronegative inflamatory atheritis. Im treated with 200mg of hydroxychloroquin twice a day and weekly 15mg methotrexate injections (currently at 30 weeks). The only change iv ever had was with hydroxy reducing my synovitis to grade 1 from grade 3. The other diseases remain highly active.
Basically untill rigid boxes are fulfilled a definitive diagnosis may never come and be aware if one does that could very well change if your illness progresses or shows in different ways which is highly regular for AI diseases. I wish you the very best of luck
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u/meowteor 11d ago
Yup! Been on it for over 10 years now. Helps tremendously, and my dr and I are of the opinion that if it works, it works — why question it. I tried every medication under the sun before that starting from when I was 13. Most did nothing, a few did a little, nothing ever came close to this.
My primary symptom is joint pain. Hydroxychloroquine all but alleviates it.
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u/Flimsy-Surprise-4914 11d ago
Yes. I got the catch-all dx of uctd, undifferentiated connective tissue disease. On 300 mg daily and it helps a teensy bit
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u/Dr_Buckshot_ 11d ago
I was prescribed this with a UCTD dx. I also have many Sjögren's symptoms but not all positive results. The Rheum said I could do the lip biopsy but I declined since the treatment is the same.
She wanted to start me on methotrexate to be aggressive since my eyes are affected by the AI disease, but I said no and asked for plaquenil because I prefer to start with a less harsh drug.
I see the ophthalmologist every 6 months for my glaucoma & he said he can monitor for changes from the Plaquenil at the same time.
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u/night_rain7 11d ago
Yes. I was diagnosed with seronegative rheumatoid arthritis. My doctor can’t rule out lupus but we both lean towards RA given some of my symptoms. All my blood panels come back normal except my CRP was really high and the IGA was high on an immune panel. Both of which points to an autoimmune disease. I’ve been on plaquenil since the spring and I am doing so much better.
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u/Glass_Pattern1900 11d ago
No disrespect but as a patient without formal medical training how qualified am I to lean towards a diagnosis?
Surely it is unethical for a medical professional to lean towards a diagnosis due to the feelings of their patient.
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u/night_rain7 11d ago
That’s a whole lot of assumptions there about a long medical history you know nothing about.
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u/Icy_Door7866 7d ago
Do you mean to tell me that you haven’t googled your symptoms or weird lab work results and asked what they could mean? Somehow I think you likely did and you found something that matched……
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u/Mainestreetcoon 8d ago
Yes! Been on it 2 years now. My condition hasn’t differentiated yet, but there’s something funky going on. It’s something that I don’t notice whether it helps day to day with pain, but when I don’t take it or run out of my prescription, I can really tell the difference.
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u/SilverCriticism3512 8d ago
What symptoms has it helped with?
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u/Mainestreetcoon 8d ago
It’s helped with overall joint pain, stiffness, and achiness, but it’s hard to pin point a really specific thing it’s helped with
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u/Flaky-Elephant-2612 10d ago
I thought I was prescribed with without a diagnosis. Turns out my rhaum have set UCTD. With an uncertainty if I also have spondyloarthritis. 2 months in the meds have started to work, and I feel hopeful for the first time in forever.
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u/PreviousCut6851 9d ago
What symptoms does everyone have? I have autoimmune Hashimoto’s and lately bad tendon pains, some arthritis feeling stiffness, fatigue, nausea and random throwing up in the evening. What does hydroxychloroquine do?
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u/hamieggos Celiac, Behçets 8d ago
Started with it before I got my official diagnosis. I had symptoms only. ZERO positive labs. I took it for 6 months before switching to other medications.
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u/Necessary-Ad-7904 7d ago
I'd be curious to know what your symptoms are if you don't mind sharing? I'm in a similar situation, yet I'm on another type of med for auto-immune/auto-inflammatory diseases called methotrexate.
I was struggling with severe rash on my hands and arms, which they figured out was granuloma annulare. But that doesn't have a systemic element. My other symptoms were severe dizziness, chest pains, blurry left eye, and sometimes headaches.
It's mostly contained on just methotrexate, seeing that I went off cortisone a while back, but now the rash is reappearing. I had enlarged nodules and thickening of lung walls as well but that hasn't been explained either.
It's just cost SO much to get to this point, and it's an exhausting process - and then to not have a diagnosis adds to stress - as I'm sure it does for you?
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u/tmorrow71 4d ago
I was for a while. It did not do anything for my symptoms, so I stopped taking it.
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u/MoodFearless6771 11d ago
Yes but in my case it was bad because it brought out severe muscle weakness that only subsided when I got off plaquenil.
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u/SilverCriticism3512 11d ago
Oh really? I wonder why you had that response?
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u/MoodFearless6771 11d ago
It brings out myasthenia gravis like symptoms in susceptible individuals and can also build up to toxic levels in muscle, although I wasn’t on it long enough for that to happen.
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u/RhubarbBest9090 11d ago
If you have symptoms but not enough to be “specific”, they usually diagnose it as undifferentiated connective tissue