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Please share your experience on hydroxychloroquine/Paquinol

Posted by annpeters @annpeters, Sep 23 8:28am

I was prescribed hydroxychloroquine while they try to figure out what’s happening in my system. I believe they’re thinking systemic sclerosis, but no clear answers at this point. Medication seems to have a paradoxical effect on me. Little bit frightened. Thank you so much for your responses.

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diverdown1 | @diverdown1 | Sep 29 9:54am
In reply to @maghera "@diverdown1 What eye issues? I had a haemorrhage in my right eye last week with no..." + (show)
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@diverdown1
What eye issues? I had a haemorrhage in my right eye last week with no obvious cause.could that be from the medication?

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@maghera Be sure whoever is prescribing the hydroxychloriquine is aware that happened. I am not saying it happened due to that, but err on the side of safety. I have found that doctors don't communicate with each other very well.

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annpeters | @annpeters | Sep 29 1:17pm
In reply to @diverdown1 "@annpeters I have Long COVID, which essentially boils down to chronic inflammation. I am of the..." + (show)
Profile picture for diverdown1 @diverdown1

@annpeters I have Long COVID, which essentially boils down to chronic inflammation. I am of the belief that most autoimmune diseases are linked to inflammation in one way or another. There is research that has found that people with Long COVID and inflammation affecting the brain, has created a decrease in the dopamine neuron receptors. So, I also take Gabapentin and Cymbalta. I am on the lowest dose possible of these. The issue is that in the mornings, the fatigue and post-exertion malaise and pain feels like I have been in a car wreck, although this is not every morning. I am always fatigued in the afternoons, well, I am always fatigued, but it is worse at night and in the morning before I take my morning meds. I also had a reactivation of EBV when I first got sick in 2022. I had gotten Covid-19 in January of 2022 and then again in March 2022. I was a runner, weights, best shape of my life and then 3 months after I had Covid-19 for the last time, I woke up just plain sick, felt poisoned. I also believe that Long COVID mimics other autoimmune illnesses. I went through a ton of tests with a rheumatologist and all she had to say was that EBV was reactivated, my ANA was flagged and I had RA. I have since been tested again for RA and it did not show...It has been frustrating. In fact, in 2022, I told the Rheumatologist that I thought it was Long COVID...she rolled her eyes at me...so, I have had to do so much of my own research on all of this, reading papers, reading others posts on this site. Anyway, I am grateful as it could be worse. I have to remind myself of that daily as well. Sending you good thoughts too!

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@diverdown1 I am so sorry your life has changed so drastically with this inflammation. You are too young for it! I understand the eye roll … So many questions left unanswered… I could be wrong, but I thought I remember reading somewhere that you can have RA without having a positive test. Do you think it may be the case in your situation? Especially since you had a positive RA already…? I’m glad for forums like this where we can learn from each other and support each other. Wish I could do more. I know being grateful changes something in your brain. Speaking of brains, I had a CT scan recently and it showed, from what I’ve seen, haven’t talked to the doctor yet, but it showed mild parenchymal volume loss. I would really like to go on Cymbalta but it gave me diarrhea. Maybe I can start at a half a dose or something. I forget whether it was capsules or tablet. It’s kind of hard to split a capsule … anyway thanks for listening. I’m grateful! 😊

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annpeters | @annpeters | Sep 29 1:24pm
In reply to @kmg218 "@diverdown1 Yes, all labs were done. None point strongly to RA but MRI of my left..." + (show)
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@diverdown1 Yes, all labs were done. None point strongly to RA but MRI of my left hand showed inflamation in my thumb joint and that led to the decision. My mother had lupus, my two daughters each have auto immune issues...and I have awful pain in my lower back and hands and wrists worse in the morning. Lots of osteoarthritis on X ray in back. I think it was not clear to anyone but just a well, maybe this is whats going on? That is why I am seeing yet another rheumatologist but not till next year as I can't get an appointment...

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@kmg218 I wonder if you live in Canada? Hard to get an appointment here. Hope you get some answers and relief.

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kmg218 | @kmg218 | Sep 29 3:11pm

No, I live in NJ....right over the bridge to Philadelphia. I'm trying to stay in my Cooper health system where all my other docs are but for some reason the rheumatology division has lost several physicians. I am outside the system now with someone I don't love so hoping the new one I see early next year is someone I feel comfortable with and can trust to do what is best for me. thanks for your comment....

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kmg218 | @kmg218 | Sep 29 3:14pm
In reply to @fairn "@kmg218 Has rheumatologist tested you for the HLA-B27 gene? Your symptoms sound very similar to my..." + (show)
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@kmg218 Has rheumatologist tested you for the HLA-B27 gene? Your symptoms sound very similar to my sister's and mine and that came up positive for both of us. It is connected to Ankylosing Spondylitis and other inflammatory disease. We are both diagnosed with Sjögren's as well.

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@fairn No, I have not been tested for that gene...I will mention it to my GP when I see her in a few weeks. Thanks for that info...

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kmg218 | @kmg218 | Sep 30 5:58am
In reply to @diverdown1 "@kmg218 Curious if they have done an ANA lab and tested for all the autoimmune disorders?" + (show)
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@kmg218 Curious if they have done an ANA lab and tested for all the autoimmune disorders?

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@diverdown1 Yes, all bloodwork has been done. Since my mother had lupus, I have been tested my whole life and throughout I have had positive ANA and elevated sed rate...now they are closer to normal. My CRP is normal. Of course tested for lupus and docs say no, I don't have that. I will ask for more comprehensive testing outside of the parameters of only RA as I think they have just settled on this as my diagnosis, regardless of much real evidence...

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kmg218 | @kmg218 | Sep 30 6:04am
In reply to @annpeters "@kmg218 I understand your situation so well! I know that putting a name on something does..." + (show)
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@kmg218 I understand your situation so well! I know that putting a name on something does not change the pain level, but for some reason it, at least speaking for myself, gives you a chance to take out that diagnosis look at it and figure out maybe even embrace it and move forward. I hope you will stay on this thread and are able to report back a diagnosis and a relief of pain. Sending prayers.

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@annpeters thank you for your kindness...yes I am trying to make peace with this all. The doctors are quick to diagnose without listening to my story. Last May I was in Phoenix with my boyfriend feeling relative good, hiking, no pain like I have now....but I know that my work and life has done a number on my joints, I was a horse barn owner my whole life, taking care of 20 horses and a large facility. Lots of lifting and heavy work with my hands which are the worst of my pain. Anyway, I got covid for the third time last September and that pushed me over the edge pain wise. When I say that they sort of roll their eyes like, that can't have been part of this. I swear it is...I saw my first rheumatologist in January and that was when I got the RA diagnosis. I will stay on this thread, I find everyone's story interesting and feel a kindred spirit here. Appreciate your prayers and send them back to you...

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elainebee | @elainebee | Sep 30 8:18am

I feel like it is such an individual response that we have to try these medications for ourselves. I was prescribed Plaquenil as I was being diagnosed with a connective tissue disease and which then was narrowed down to amyopathic dermatomyositis. It seemed to help with my over all muscle and joint pain and the rash. However I also have IBS and gastro paresis so the plaquenil caused me to have diarrhea that could not be controlled even with the gut steroid I am taking. So I am now off the Plaquenil and about to try methotrexate.
Monitor your symptoms and read up then be your own best advocate. I hope you find what works for you.

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rheumatol3 | @rheumatol3 | Sep 30 2:22pm

I was on hydroxychloroquine for approximately 3 1/2 weeks when I woke up one morning and was covered in a rash from my chest under my breasts. It spread through my whole body and took five separate courses of prednisone to calm down the drug eruption it scared my previous rheumatologist to the point where she was under medicating me for Ari and I got to the point where I almost couldn’t walk. Luckily I am now on a better medication and have a competent rheumatologist.

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annpeters | @annpeters | Sep 30 8:15pm
In reply to @rheumatol3 "I was on hydroxychloroquine for approximately 3 1/2 weeks when I woke up one morning and..." + (show)
Profile picture for rheumatol3 @rheumatol3

I was on hydroxychloroquine for approximately 3 1/2 weeks when I woke up one morning and was covered in a rash from my chest under my breasts. It spread through my whole body and took five separate courses of prednisone to calm down the drug eruption it scared my previous rheumatologist to the point where she was under medicating me for Ari and I got to the point where I almost couldn’t walk. Luckily I am now on a better medication and have a competent rheumatologist.

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@rheumatol3 man! 3 1/2 weeks! Our bodies are so complex! Do you mind sharing what medication you’re on? My thanks

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