hello lovely people,
I’m starting Hydroxychloroquine this coming Thursday. I’m praying works as it should and helps my pain, rashes and tiredness etc.
I’ve recently finished some prednisone for a chest infection and they help so much with everything
my questions are - what should I expect when I start taking it and is there anything else I should be asking for and will it help the same like the prednisone?
Thanks 🙏🏻
I've never taken prednisone but was prescribed hydroxy for a few years to treat mild SLE, it helped a lot with fatigue. I needed eye checks that came back clear and had no problems with it at all, no side effects it suited me very well.
It was stopped because my condition is stable right now, the rheumatologist said I didn't need it. Good luck I hope it helps things for you.
It takes months to get into your system, I’ve been on it for years but when I first started taking it, it made me very nauseas. I always take it after food, it’s a mild drug and not the same as prednisone, you won’t feel any difference for months unfortunately but hang in there it helped me, I still get rashes but hopefully not as severe.
I started a couple of years ago on hydroxychloroquine. It takes months to see any benefits so stick with it. It bought my dsdna level down to normal so did well in dampening my immune system. A few small symptoms stopped like bleeding gums. My rashes haven't changed and fatigue has not improved. I haven't got much worse though so hopefully it's holding me stable. I have lupus/sjogrens like you. If you feel nausea on it try another brand of hydroxy. I felt awful on Bristol labs quinoric but after reading posts on here I changed to Zentiva and have no issues taking it all now. I hope things work for you.
Hi Flakeyy, been taking hydroxychloroquine for 3 yrs I've had problems with nausea but had to find the right brand that suited me. Always take with food I take mine with breakfast. It takes a couple of months to start working but stay with it if you can and you'll get benefits 😊
Thank you ❤️
I’ve been taking it for a few years. There can be some nausea, but that only affected me initially. The first 2-3 weeks of taking it made me itchy all over, but not since. I otherwise had and have had no particular skin problems though. It does take some time to make a difference. This seems to vary. My Rheumy said 3 months. I think it was 4 months for me, but we all respond differently.
My GP arranged eye checks. It’s worth the wait.
I’ve been on it 13 years, with no side effects. Do make sure you get an eye test including an OCT scan (Specsavers do them and opticians are very knowledgeable about hydroxychloroquine) before you start and then annually.
I have been on Hydroxychloroquine for a couple of years at 400mg ( above weight recommendations but needed to get disease under control). My malar rashes are far less frequent and although I can still get fatigue it is not as intense as before. It's not quite as effective for my joints, sadly. I've never had a problem with it. I take it with food in the morning and then forget about it.
It is a drug however with a low threshold for toxicity. By accident, I took a dose 6 hours too soon, whilst juggling too many things. Sought advice from chemist, who phoned advice line, who phoned the national unit, who phoned the local hospital and I ended up in A&E. Seemingly, it can quickly affect heart rhythms if you 'overdose'. I was fine. Just thought I'd mention this as I had no idea of this threshold and it's important if we want to change the times we take drugs. Otherwise, as others have said it is a very well researched and one of the safest drugs for our diseases.
Hope that helps a little and good luck. x
After a recent Pfizer jab I found this happened. I had just increased hydroxychloroquine and was also drinking bitter lemon everyday because I like the taste..the extra quinine on top of the Pfizer jab .. and my heart rhythm changed. Happened every night when first lay down.So went back down to original dose of hydroxycholoroquine for couple of weeks and stopped drinking bitter lemon
Later on, reintroducing later of Pfizer flare, all has been okay.
So many factors ..even tonic water playing in, affected heart conduction...
Take it with a good solid meal, the advice on the packet is that you can take it with a glass of milk but that just isn't enough.
Hi - I’ve been on Hydroxy for 8 years and it helps no end. It is a slow worker so don’t expect fast improvements, after a few weeks you will notice some of the symptoms you suffer have lessened. Some I have never got back. Good luck
Hi I’ve been talking prednisone since 2014. Dose has been up and down ranging from 2mg to 30mg, depending on the inflammation of the liver. When the dosage is lower im fine but on a higher dose i find myself more alert especially at night. I can’t fall asleep. I start gaining weight and a moon face with double triple chin. But apart from that haven’t noticed anything else. Oh yes i think my skin has gone thinner but that is because i have been taking the tablets for many years now. The plus is that you are mainly pain free and able to do a bit more around the house. Hood luck.
Hi flakeyy, weening off Pred, down to 2 mg should be completely off by 1zt week of September, I take Co-trimoxazole 3x a week to help fight infection and 6 monthly rituximab infusions so Co-trimoxazole could help. 👍
I take one in the morning, one at teatime. Both after food. I can only tolerate zentiva, find thus brand more gentle on the stomach..I've not had a huge flare again. Do still have tgem though, less severe. I still get a rash and joint pain and fatigue, who knows if hydroxychloquine has dampened it down? I'd have to stop taking it but that's not going to happen .
Good luck, let us know how you get on x
Hello Flakeyy I have been taking hydroxy
For several years. 2016 I think. Unlike what many say, I responded very quickly. Malar rashes, hair loss, energy improvement I noticed right away. It took longer to ease inflammation in joints. My lupus has begun to be more advanced; more bothersome.
Unsure what I will do next. Good luck.
Thanks so much ❤️
Hi there Flakeyy,
I'm glad to hear that you have finished the medication for your chest infection, hopefully you are feeling better?
I can see you have received lots of useful information and advice from other members, however I wanted to include some links to some publications and articles that may also be worth checking out.
lupusuk.org.uk/hydroxychlor...
lupusuk.org.uk/wp-content/u...
Let us know how you get on with your Hydroxychloroquine.
Warm regards,
Michaella 😊
Thanks so much ❤️
I found the two videos in this post really good when I started hydroxychloroquine.
(It was good keeping a log and seeing how symptoms, one by one, went in the months that followed.)
Hope all goes really well.
healthunlocked.com/lupusuk/...
Thank you ❤️
Hi Flakeyy
It’s such a relief when a medication is suggested as all I want is some relief from the awful SLE symptoms.
However, I had severe adverse reactions to both Hydroxychloroquine & Prednisolone which came on very soon after starting them. I was told by my Rheumatology Team to stop taking them immediately.
Therefore I didn’t get the chance to find out if either were effective for my persistent symptoms.
2 weeks ago my Consultant Rheumatologist told me that there is no specific Lupus medication to aid fatigue, but that some patients will often feel able to do more once they find an effective medication. Their symptoms tend to improve so they then naturally feel better in themselves.
I didn’t take both Hydroxychloroquine & Prednisolone at the same time though; Hydroxychloroquine may well be very effective for you, so I don’t wish to alarm you with my experience.
What suits one person doesn’t necessarily suit another 🙃
I hope all’s going well for you 🌸
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