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Scleroderma & Raynaud's UK (SRUK)
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Hydroxychloroquine

Hi guys it’s been a while, hope u are all well and looking forward to Xmas!

So... my husband has gone in for his yearly iloprost treatment he missed last year and has been in a lot of unbearable pain. Dr Denton has recommended hydroxychloroquine for the pain? I believe,

Can you let me know your experience with this drug side effects etc.

Sorry if I am repeating myself as can’t find previous post thanks all x

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I am just new to this drug and so far so good. You have to have your eyes tested every 6 months though. Had my initial test and all is healthy behind the eyes I will have subsequent tests at the hospital where my Rheumatologist is

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What do u find this medication has helped with and thank u for your reply

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As far as I know it's for muscle and joint pain and fatigue

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Hi, I can only help regarding the Iloprost Infusion.

I’m not going to sugar coat it! It’s rough BUT it works, I’ve been having it for 15 years, dread it every year. But it’s worth it. They wanted me to have it twice a year, didn’t really see the benefit mid year but about October to get through winter is around the time I have it. Depending on how the weather goes could have influence on having it twice.

If you want more details of how you feel whilst on it. I have literally just had it done so it’s very fresh in my head.

Hope helps.

Nikki

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Hey Nikki thank u he’s actually having his iloprost treatment right now. It does help him a lot. He’s also been on that for last 5yrs. Professor has prescribed the Hydroxychloroquine So was wondering how it had worked for others?

Thanks hun x

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Hi KC I have been on these tablets for a couple of years and I think they make a difference. I am on so many other pills that I can’t say for certain but not had any side effects from them that I know of. Good luck to your husband and hope it helps him. X

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Hi kc - I’m only on hydroxychloroquine for my ssc and I’ve had no symptoms other than the tablets are soooo disgusting you don’t want them to touch your tongue 😛 I know some people have had side effects with them and some people don’t. They take a few months to have any effect too.

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I have been taking this tablet for must be about 18 months. I really dont think it does much for me. All I found about two week after I started I was getting problems with my eyes. I was getting pains in my eyes for months. Also it really affected my eyesight. It made my sight worst. I am still taking it. But hate what it has done to my sight. You will have to get your eyes checked a lot more frequently.

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Hi kc1411

I've been taking hydroxychloroquine for 3-4 years without adverse side effects. I understand that the drug is an immune system suppressant. As someone else has said, it takes awful if it doesn't go down with the first swallow - but swallow it quickly and all's well. I've done a bit of Googling about this drug as I too was hesitant to take it. I've read that it's one of earlier drugs for system sclerosis (Raynaud's and scleroderma) but consultants prescribe it because it displays the least side effects (which is a it of a comfort). However, I was told to let my optician know I took this and they will know what to look for when doing your eye tests.

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Seems like most of you (so far) have had a good experience with hydroxychloroquine! I wish I could say the same. I couldn't tolerate it. A few hours after each tablet, I would be vomiting. So I stopped and tried a few months later, but had the same experience.

We're all different though.

I hope it works for your husband!

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Like you, I would vomit shortly after taking it but found out it was the brand Quinoric. When pharmacy gave me a different brand Blackrock it didn’t taste acidic or make me sick and is interchangeable with the brand Plaquenil. It’s not always easy for the pharmacy to get this brand but I refuse Quinoric which is awful. Maybe worth a try because it does help with muscle weakness and cramp.

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Thank u all he is the worst patient hates meds, but fingers crossed it’s one that helps!!!

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Like Cookie 81 I vomited and had really bad stomach after taking a tablet and it tasted vile so wasn’t coated as claimed. The brand was Quinoric. By chance the pharmacy gave me a different brand Blackrock (which my rheumatologist said sounded like something you’d buy off the streets!) but I since found out is interchangeable with the original brand plaquenil and does have a coating and doesn’t make me sick. I find it helps with muscle weakness and cramps. I take prednisolone for joint stiffness and painful hands and feet (works great) and nifedipine for Raynaulds. All for SSc.

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Hi Kc-1411 - I've been taking hydroxychloroquine for a few months along with methotrexate. Luckily for me I didn't have any side effects, and could easily swallow the tablet without any issues at all. Unfortunately, though it had no effect on my condition, and my consultant has now decided to stop this particular tablet. I hope all goes well for your husband.

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That’s a shame. Thank you it’s been a couple of weeks now and he has noticed the inflammation in his hands has gone down. Hopefully the side effects will not start suddenly x

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