Can anyone help by sharing their experience of hydroxychloroquine. Specifically anyone who has not been able to tolerate it? I'm beginning to feel like an oddity because I seem to have had quite an immediate reaction to it, which I was not expecting as I know the drug takes a while to get into your system to work.
Within an hour of taking a tablet, I got a mouth ulcer. I skipped a night to see if it really was the drug, as I've had ulcers at the outset of becoming ill years ago and thought it might just be a coincidence. I didn't get another ulcer on the evening I skipped the dose, but got another on my lip when I took the next dose the following night. This continued and until I could feel ulcers at the back of my throat, which made food very painful to swallow.
I felt more nauseous than usual, but knew to expect this. I also had a very strong and vile taste on my tongue that was constant and grew worse the more I took the drug.
But worse of all, within about 12 hours of taking the drug, I was constantly bursting into tears for no apparent reason. This was the worse symptom. I didn't know why I was crying - it was the emotional equivalent of a sneezing fit. I just did not feel like myself at all. I didn't immediately associate it with the drug, but my partner fetched the patient information leaflet because the change in me was so apparent and saw that it can be a side effect.
I have not been able to manage more than just over a week on the drug. I couldn't stand feeling so tearful and low for no apparent reason. (I also couldn't stand the vile taste on my tongue). I called my GP today and told her. She confirmed it was a side effect, but said that the emotional lability should get better the longer I stayed on the drug.
I don't think she realises just how badly it impacted on my mental well-being- I don't think I could bear to take it any longer. I feel much better off it mentally, although my symptoms are bad physically. She did suggest putting me on a low dose anti depressant to deal with this side effect while the drug bedded in, but I don't like the Idea of this and feel it would muddy the waters in terms of judging how the hydroxychloroquine deals with my joint and muscle pain and the awful headaches.
I am very worried about reporting this to my rheumatologist in 2 weeks as I wasn't keen to start the drug anyway because of the potential side effects to my eyes. But I am suffering so much with symptoms that I was willing to try anything at this point. I am worried that because I've had such a bad reaction, they may not believe I'm willing to take the drug. I am, but not at the cost of my mental health. The brand I was given is Quinoric.
Because I have a mannose binding lectin deficiency, an immune deficiency, I have been warned that they would not be keen to put me on immunosuppressants as my immune system is compomised and I get repeated shingles. I take valacyclovir daily to counter this. I have never been tried on steroids.
My complement C3 and C4 have been historically low, but not drastically low. I have not had my UVS diagnosed as hypocomplementemic, nor been told it is normocomplementemic. I am waiting to see a dermatologist still and was diagnosed last October.
Is there anyone who has had a similar reaction to hydroxychloroquine, and if so, what drugs were you treated with instead? Did they help? I'm beginning to feel a bit hopeless in terms of finding a drug regime that will pull me up from the downward trend my health has been headed in for the last 3 years. Thank you 😊.
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Thank you so much for replying. I hope you are on a drug that helps now. Do you mind sharing how you finally got your psoriasis properly diagnosed - was from a skin biopsy?
I got a text yesterday cancelling my dermatology appointment for which I have had to wait 9 months. I need a biopsy to confirm the diagnosis of UVS and rule out other types of inflammatory disorders - I have a number of recurrent rashes and only some of them resemble urticaria.
Feeling even flatter now as I have no idea when, given the pandemic and this cancellation, I will ever get that biopsy done. I actually had the rash up for once when I was seen in rheumatology in February this year and asked if it could be biopsied or swabbed then while it was apparent. It's never usually present when I go for outpatient appointments. I was told there was no facility to swab or biopsy, but that once I'm under dermatology this could be done.
Things are not looking encouraging right now! But I guess that is the same for many of us.
I am so pleased you found the right person eventually 😊. Do you mind sharing what drugs you found helpful when the hydroxychloroquine didn't work for you?
Hi, I have HUVS and possibly Sjogrens. I have been on Hydroxy for almost 6 years and now am convinced some of my symptoms are from the side effect as you are discovering. But I have put up with lots of side effects due to the fact that I am in remission from all skin rashes (incredibly bad) and swollen joints (feet, fingers, knees etc). Yes, the bad taste in my mouth I have lived with and also brain fog, imbalance , ringing in my ears etc and extreme fatigue. The problem is that doctors cannot tell exactly which symptom are due to the actual disease and the side effects from the medicine. Vasculitis affects people in so many different ways. I think medication is to a great degree approximate measure as nothing is catered to each individual needs in current system. I have had HUVS for nearly 20 years. My immune system was greatly compromised due to one treatment of Rituximab. My neutrophil level has been very low ever since. What I am getting is IVIG therapy once a year. I understand this is not readily available due to its high cost and rarity. Addenbrooke seems to give more easily but that is just an impression from reading others on this site. I do not know.
I am at a point of asking my current Vasculitis doctor to consider changing my medication despite the fear of having skin rash attacks again. I am tired of having headaches along with lots of other side effects from Hydroxychloroquine. But I have never had depression from it I don't think. Do you take vitamin D? That helps with depression.
Your Vasculitis symptom must be mild if you have never been put on steroids yet. I have been on and off and the longest was for 7 years straight.
Thank you so much for replying. I'm sorry you are still having a difficult journey.
Interesting that your neutrophils were knocked by the rituximab as my neutrophils keep periodically dropping without any treatment, so I wonder if that is something we are vulnerable to anyway with this syndrome.
I have been sick for all my adult life, over 20years, but was diagnosed with M.E.. I cannot work and have had many limiting symptoms, particularly worsening over the last 3 years My vasculitis is not severe in the sense that my kidneys aren't affected, although my anti -C1q antibodies were high at 132 ( ref range 0-19). These were only found last October at the 11th hour - the rheumatologist told me before he took blood that he thought my 3 year severe deterioration was due to fibromyalgia, a diagnosis I was never convinced by as the root cause.
I also have an increasing number of white matter hyperintensities on my brain and wonder if the vasculitis is causing this too.
I have trouble walking most days, have had to rely on a wheelchair a lot of the time when I do manage to get out, get dizzy, lose balance, have muscle spasms and twitching, suffer pain all over that hasn't responded to any of the pain killers I've been given, and have severe headaches that further affect my ability to stand because my muscles become so ridiculously weak. I too suffer from severe fatigue. I also have eye pain and swelling regularly, as well as facial swelling that antihistamines don't address. I feel as if my eyes are being pressed closed by my upper eyelid swelling a lot of the time. My vision is often v blurry.
I think I am luckier than you in that I don't have the rashes all the time, but rotating every couple of weeks.
Because I was diagnosed with M.E. and fibromyalgia, I have never been offered steroids as these aren't deemed to help those conditions. I had Meningitis several years ago which was assumed to be viral ( they failed to test the sample of CFS for viruses) but I actually wonder whether this was autoimmune knowing what I know now. The headaches I regularly suffer are identical to the headaches I had in the week leading up to the full blown meningitis.
I'm largely confined to bed and home, and have just been getting so bad over the last 3 years. I don't know if the steroids helped you? I'm hoping they might trial me on a low dose at least to see if it helps with the pain, rather than put me on heavy immunosuppressants.
The reaction I had on the hydroxychloroquine was weird because I am not ordinarily depressed, so to sit there and just cry for no reason was very weird! It has stopped now I have stopped taking the drug, thank goodness.
I am sorry you are not getting more regular IVIG- I think it is expensive, but I see from other people on the forums that it is usually very helpful in cutting down infections and making them feel generally better. I hope you can try something else or additional to help with your current symptoms. What you describe as side effects do also sound like symptoms I've had without any treatment. It is hard to distinguish what is causing what.
Thank you for the tip about Vit D. I was on this, but haven't been for a long time. I'm going to get my levels checked on Friday hopefully, along with my B12 and ferratin.
I wish you as well as can possibly be with these rotten conditions! Take care.💐
Thanks for your detailed response. As for the steroids, please don't go there if you can help it. It should be used only for a very short period to control horrible inflammation. If you take it for a long term even in low dosage, it has horrible side effects. You seem to be very sensitive about your eyes. Well, they cause cataract on top of weakening bone density not to mention many other side effects. I think all auto immune conditions are caused by some old hidden virus that lurks in our system...a bit like shingles that live on nerve endings. Although not detected in tests, they are there and our immune system reacts. If only the medical research could be done better and widely for us!
I totally agree with you about the hidden viruses. That's where the research needs to focus. Sorry if it was too much detail 😃.
And thank you for the advice about the steroids. I would only want a short dose, it's just the inflammation in my hip and leg is so bad now and isn't responding to anti-inflammatory drugs. It's so frustrating not being able to stay on my legs. I won't get another hip injection as they keep cancelling my face to face appointments because of the pandemic. Wish there was just a magic pill we could take, or that o could have served our time by now the way prisoners do 😁🤣👍🌈 We can but dream. Take care
Thank you so much for explaining that. It's really helpful. I'm going to ask my Dr again if they will double check I'm not getting GCA because of headaches.
Hi, I just wanted to let you know about Hydroxychloroquine produced by the company called Zentiva. It has slightly different ingredients from the regular ones I had over 6 years. I started having lots of problems and I guessed it may be down to the brands. So after spending a good part of a day, I have managed to get the one by Zentiva and it has made a big difference. I no longer have acid stomach/reflux and also the nasty taste in my mouth is a lot better. Just in case it may be of help to you.
Thank you so much. I am really grateful for that information. I seem to be tolerating that brand ok at the moment, so that's been a huge positive step for me too. No nasty taste on tongue and more importantly no dark mood.
Unfortunately not managed to slow down the rate at which my feet and now knee joints are beginning to swell! But I live in hope!
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