Hi folks
I was prescribed 2 tablets a day of hydroxychloroquin, morning and night for 4 weeks then to drop to 1 a day. I felt taking 2 helped my fatige hugely and now dropped to 1 I am unbelievably tired.
Had anyone had any experience and should I speak to my rheumatologist about it sooner rather than later.?
Xx
Just wondering:
Fatigue, chronic fatigue is very much part of having lupus. Very few lupus sufferers do not complain of this symptom. The correct dosage of hydroxychloroquine sulfate is to control/manage lupus symptoms optimally.
Now if you have dropped the dosage of the drug could the lupus be less well controlled?🤔 Hence the lupus comes back?
OR is hydroxychloroquine giving you fatigue? I have not seen “fatigue” documented anywhere as a side effect? But I could be wrong.
Normal dosage for me is 200mg tablets twice/day=400mg total per24h.
What worries me a lot is hydroxychloroquine can give eye problems hence the need for regular eye checks.
Interesting
Funny u say that! I’m on the same dose of you and this week have had the worst burning pain in my eyes like I’m super tired and hard to keep eyes open, is this common?
Hi Gizmo81,
Pleased to meet you:). I also take the 400 mg. dose split into morning/night. Like you, have been struggling with burning eyes. I have been chalking it up to dryness in the eyes, fatigue, allergies and summer heat. Where I live it is normally 95 degrees ( F) in July. Find myself staying away from windows and inside with air conditioning set very low. This could also contribute to the dry eyes. Sounds very lazy but often too tired to find my eye drops! I have both Fibromyalgia plus Lupus ( Lupus just set in about a year ago). Hope you find some relief soon!!
Hello,
Difficult to say what is causing the burning eyes or the tiredness?
*Tiredness-definitely a common symptom of lupus and Sjögren’s syndrome (another autoimmune disease, cousin to lupus). Could SS be developing?
*Burning eyes -definitely part of Sjögren’s Syndrome disease. Use dry eye lubricant.
Get from pharmacist or prescription.
*hydroxychlorine-tiredness as a side effect? Has not been recorded as yet.
Regards
Have you just recently started this medication? X
Been on it for a few months yes x
I was going to say they can take anything from 3-12 months to start working. If you’ve been on them a few months maybe they were helping. I find they keep fatigue more at bay.
It could also be that your flaring.
I can’t manage 400mg myself x
My guess: HCQ 100% helped with your fatigue. Go back up if your rheumatologist will allow it.
I was diagnosed with adult ADD and placed on a stimulant many years ago. Little did I know I was masking fatigue from lupus. Stopped the stimulant cold turkey once I figured out that HCQ worked to improve my focus and cognitive function. I whole heartedly believe that HCQ helps with fatigue. Maybe you could try 1.5 tablets which is where I am right now. Optimal dose is 5mg/kg.
Thanks hun. Speaking to team on Friday so fingers crossed. I felt so good for a few weeks then dropped and past few weeks been exhausted all the time x
And honestly don’t be scared about all the eye problems. It rarely happens. Make sure you get optho screened per guidelines and keep up with eye prescriptions if you have one. Chances of having problems don’t increase until after 5 years of medication. It’s real but very rare. In the game of life, I’d choose a quality 5 yrs and lupus flare prevention with an otherwise nontoxic medication. Big risk taker over here but to each their own. Discuss this with your team. They should understand.
No totally agree. The 2 weeks of pain relief I had made me realise that x
Not sure about risk of eye problems with hydroxychloroquine.
According to enclosed leaflet by manufacturer’s Zentiva,
“...Stop using hydroxychloroquine and see a doctor straight away if you notice any of the following side effects,
(leaflet in bold),
Common (affects one in ten people in 100 people),
*you have any eye problems which includes changes in the colour of your eye and problems with eyesight, such as blurring, sensitivity to light or the way you see colour...
Uncommon (affects one in ten people in 1000): muscle weakness, cramps,stiffness, spasms or tingling sensations...
Difficult to discuss with “team” if you are under the care of different consultants:nephrologist, dermatologist, diabetologist, GP etc.
Prescribers like to be in charge of only their own prescriptions and not others. Hence patients tend to be left in limbo.
Understood. I was only recapitulating what I saw in an earlier post. Obviously discuss with the prescriber. Color changes, vision problems in bold are warning of retinopathy. Not my place to say don’t worry about it all. Just saying when you discuss treatment with your doctor, make sure to weigh all risks and benefits. Sometimes the risk can be worth the benefit....in your case, improvement in fatigue and functionality.
Similarly, I found my Adderall (for my ADD) was helpful when I was feeling lupus fatigue. HCQ definitely functions as a stimulant for my system but also helps with the aches and pains. I only throw adderall in the mix when I have a deadline or need to work at a high level for days (I'm an academic).
Morning! I was just wondering how long you’ve been on the hydroxychloroquine? I started taking it in September 2018 and it wasn’t until April that I saw a more sustained improvement in the fatigue. I have just had a little blip and saw my GP who also reminded me that although I may feel much better and have more energy I need to continue to rest and pace myself too as peaks and troughs can be the nature of lupus.
I also get eye pain, it’s like a deep ache, but that’s usually if I’ve overdone things or been under artificial lighting/in bright light for too long during the day. I’ve bought special glasses (clear lenses but treated with uv protection and they also take out the glare) from specsavers that really help with the artificial lights.
I hope you soon return to feeling the benefits of hydroxychloroquine.
Take care
Pip
Just wanted to add, that I have suffered with headaches/migraine with my lupus. They have been described as many things over the years, migraine, cluster migraine, lupus headaches, lupus with CNS involvement, migraine with myalgia - I get paid behind my eyes and behind my ears - recently I can get this eye and ear pain without a headache. I have had MRI's of my brain done because of the my CNS symptoms and have my regular eye checks and there is nothing wrong with either.
Usual triggers are UV light, stress, hormones and lupus flares.
Unfortunately, we all have a different bag of symptoms and it is all a case of trial and error.
And you are right, even on good days, we mustn't over do it. Rather than have a boom and bust cycle with our energy, it is better to try to pace your days and your weeks. I know that if I have something on, like going out with friends that I need to keep one or two days as free as possible for me to catch up. If I don't nap every day, I make sure that I at least rest, with my feet up instead.
Best wishes
Wendy
Hello
Are you newly diagnosed?
4 weeks of hydroxy before dropping doesn't seem long at all to me!!!!
Can I ask where you live (UK?) and which hospital you attend?
Hydroxychloroquine can take 3-6 months to get working. I am therefore surprised that you would be told to reduce it so quickly!
I started hydroxy in November 2013 and felt with hindsight that it was 12 months before I really felt any benefit. By which time I was told to reduce. With hindsight, the doctors grossly under estimated how ill I was at that point. If only I knew then what I know now. I should have been on a short course of steroids as well, to get my disease under control.
I was told that initially I had SCLE and therefore after 12 months of hydroxy was told that I could reduce this to 2 one day and 1 the next, alternating. It was even suggested that in the future I might only need hydroxy during the summer months and I might sotp completely during the winter.
Within 3 months of reducing, I was flaring and struggling to cope with life. Sleeping etc. Fatigue over whelming me.
I increased my hydroxy back up to 400mg and have been on that ever since. There are varying attitudes to hydroxy but it is generally well tolerated and can help with many lupus symptoms. You must get your eyes tested annually though, with a base line test before you start it, for future comparison.
I now know that I actually had SLE all along and have had other meds added into my treatment plan.
Of course we are all different and there is no golden formula for our medications. It is very much a case of trial and error, unfortunately.
If you feel that you are struggling to cope and the reduction isn't suiting you, get in touch with your GP or rheumy and ask for their help. It sounds like you need longer on the 2 tablets a day, to get on top of your disease activity.
Another thought, are you photosensitive? It may be that the increase sun and UV recently is hitting you too.
I hope the replies you have had help you. Fatigue is something we all struggle with every day and no tablet takes that away completely. Make sure you get rest and are kind to yourself.
Best wishes
Wendy
Thanks hun. Not diagnosed as despite bloods and other symptoms the rheumatologist is reluctant to label me. He gave me steriod injection and hydroxychloroquin and said that was a diagnostic in itself. I reacted well to it, in fact to wake up not feeling like I had been run over was a bonus. Fatigue did improve but dropped again after dropping dose. Not sure if a flair as dont have any other symptoms x
Hi ya
I had the same problem with hydroxy when I was diagnosed with SCLE in 2017! I was started on 400mgs n was doing well..saw dermy and agreed to reduce to 200mgs ie.one tablet per day..I really noticed the difference..I kept on 200mgs for two weeks n then increased it to 400mgs again n felt much better..however I am a trier so two weeks later I tried reducing again n again felt like crap!! I really did notice the increase in symptoms when I reduced both times..so we have decided to keep it at 400mgs for now xx
Thank you for this. X
Hello. I would definitely talk to your rumy earlier. I take 500mg of Mycophenolate 2x's daily (am & pm) I also take Hydroxycloraquine 200mg 1 time a day at noon. I have SLE, Fibromyalgia & Sjogren's disease. I have very dry eyes & mouth. My eyes burn and ache and are very sensitive to light. Including tv & my cell phone. I recommend to keep a health diary to keep track of what helps you & what hurts you. Never be afraid to contact your rumy before your next appointment. I even take pictures of my skin when I start turning red ect. to show my rumy. Sometimes eye drops and resting (closing) your eyes for a while might help. Good luck.
Oh, was there a reason why they took you down to 1? I'd ask for the other one back! It clearly was helping! Unless there was a reason they took it? It helps with inflammation & it is supposed to help protect your organs & joints. I never want to be without it! Make sure to get eyes checked yearly. Also on a phone note. ...twilight is a great app, it lowers light on phone so it doesn't irritate eyes as much
it hasn't helped me but my Rheumatoligest to me it could take months
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