Please share your experience on hydroxychloroquine/Paquinol

@annpeters thank you, I plan to stay with my meds and give it a chance. I believe in prayer,it is the way I cope.

Hi...I am on plaquenil and have been now for six months. I haven't seen any change in my joint pain so I went off it with my doctors suggestion to see if I felt worse off it. I did! So I'm back on it again. Guess it is doing something but I am still in quite a bit of pain in my body in general, hands and back in particular. My diagnosis is not clear, RA was diagnosed by a doctor in January who then left the practice and I have seen two more since who are not sure it is RA but definitely osteoarthritis so they just said stay on it. Can't take anything for the pain as my kidneys are not functioning great so only tylenol which does nothing. Very frustrating!! Seeing yet another rheumatologist in February of 27, my hospital can't seem to keep a full roster of docs for some reason. Wish someone could figure out exactly my diagnosis with clarity and find something that gives me relief. Best of luck to all of us who are working hard ourselves to feel well again...

@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.

@maghera I was prescribed hydroxychloriquine when I first got Long COVID. They thought I had RA. I do not. Anyway, I looked at the side effects and although it is an older medication and does work well for some, others have bad eye issues, even blindness. This is not to scare you, but it is something that the medication lists as severe side effects. That is why I chose not to take it. I am sorry you are having these issues.

@kmg218 Curious if they have done an ANA lab and tested for all the autoimmune disorders?

@diverdown1 Believe me, I am so afraid of drugs. In fact, I believe all my health issues are related to medication. I find myself in a position where if I decide not to take a medication, the doctors are going to dismiss me. And it’s kind of scary to experience all kinds of things happening to your body that you don’t understand. I am glad you had the strength to say no to hydroxychloroquine. I am curious as to what ended up as your diagnosis if you’re willing to share. And are you taking any meds? I have to remind myself that we are just passing through… Sending good thoughts to you.

@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!

@diverdown1
What eye issues? I had a haemorrhage in my right eye last week with no obvious cause.could that be from the medication?

@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...

@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.