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tisonlyme

Hydroxychloroquine?

9 posts in this topic

Hi all

 

I have been a member here for a while now but am normally just 'lurking' in the background.

 

Just wanted to ask if anyone has any experience of Hydroxychloroquine? I went to my rheumatologist last month and she has prescribed this to see if it helps. I have had Systemic Scleroderma for 12 years and now have Rheumatoid Arthritis too.

The thing that has me a bit freaked out is that my doctor has told me that I need to use an Amsler grid to check my eyesight at least once a week in case of any changes, at which point I would need to stop the meds and go back to see her. Just the thought of my eyes being affected too is really worrying, especially as the effects can be pretty quick to escalate - books are my escape when the pain has me flat on my back.

 

I thought that fellow Sclero folk would be the best people to check with regarding experience of this drug.

 

Hope everyone is well and the good days are outnumbering the bad

 

Take care

San

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Hi San

 

It's great to hear from you again!

 

Sorry to hear that you're worried about being prescribed Hydroxychloroquine (Plaquenil). I'm not on this drug myself so can't give you any first hand experience but I know many of our members are using it and a lot of them seem to have had very satisfactory results from it. We have a LINK HERE giving lots of information about the drug which I hope you'll find useful.

 

I can see that you would be very worried about the side effects of Hydroxychloroquine particularly if it affects your eyes; however sadly most drugs have side effects and I think it's probably a case of balancing the good that they're doing with the possible long term effects. It sounds as if your doctor is well aware of the eye problem and that's why she's ensuring that you monitor your eyes very regularly with the Amsler grid. That way you would become aware of any problems at a very early stage. I understand that the dosage can be tinkered with as well; I know in my own case the immune suppressant I take (Azathioprine) has to be monitored by very frequent blood tests and to begin with I did have a problem with my liver enzymes. This was solved by reducing the dosage to a point where it was still working but not causing any other problems.

 

I do hope that this information will help to ease some of your worries; I'm sure some of our other members who are using this drug will chime in and help to put your mind at rest.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hi San,

 

I understand your alarm at the idea that plaquenil (hydroxychloroquine) can cause eye problems. I discussed this with my opthalmologist when I went for my baseline screening (before I started taking it). He reassured me that such complications are extremely rare, but because eyesight is so precious, they bend over backwards to be sure to catch any problems right away so that the med can be discontinued. He had found one case in his entire practice, and I've been going to his clinic for over 50 years.

 

I may be wrong (I often am!) but I think if you read the possible side effects of aspirin, versus plaquenil, you'd likely prefer plaquenil. Just do be impressed enough by it that you do your weekly self-checks and never skip an eye doctor exam for it. It's good to be scared enough to cooperate with the regular screening program! I was on plaquenil, to good benefit, for many years. I just had to eventually (and very slowly) get off it, when I was (very belatedly) diagnosed with psoriasis, because it can make psoriasis worse.

 

My doctor told me to take plaquenil at bedtime, because then you sleep right through any side effects like nausea. That worked like a charm, and is an idea that I've used on some other meds as well, after asking my doctor and pharmacist about it, of course. Sometimes they'll instruct "take 1 in the morning" not because it has to be taken in the morning, but because it stops them being pestered with questions about exactly when to take it, and really, just taking it the same time every day is what they want.

 

Truly, plaquenil relieved so much of my joint pain and fatigue (after a few months), that I felt like I had literally been given my life back. I would have gladly gone to the eye doctor once a week, with my newfound energy, if need be. So discuss your concerns with your doctor and with your eye doctor. I think you will find their responses reassuring and that it is most likely the least toxic of nearly all the medications in this family of drugs.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi San,

 

I have macular degeneration, but the specialist ophthalmologist (macular degeneration researcher) I see says that at the doses most scleroderma patients are given, hydroxychloroquine is pretty safe. It's that old risk-benefit thing again. :blink: I have been pretty pleased with how the Plaquenil has worked for me, so what seems like an apparently very small risk is well out-weighed by the benefit in my case. I've been on it for a couple of years now. Using the Amsler grid isn't a bad idea though. I periodically still do, just to see what shapes I'll see - kind of like an inkblot test. It's endless amusement for my feeble mind. :lol:

 

Warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Thanks so much for your thoughts on this, I really appreciate it.. the links were great Jo, thanks

 

I think that because it involves my eyes/sight I am a bit more wary than I would have been about any other side effects my doctor mentioned. I suppose it's like everything else - there are the pro's and cons and it's a bit of a balancing act. Hearing that your opthamologist has seen so little of this is certainly reassuring Shelley, thank you.

 

I wasn't given any specific time to take the medication, just 'take with food' - as the only time of day I am guaranteed to eat is after work I have been taking it in the evening. I've not had any side effects other than itchy skin, and I can live with that, so it's all looking good so far. I have blood tests lined up for 5 weeks time and I'm back at the hospital for a 'review' in 2 months time - although my doctor did say I may not feel any benefit for a few months.

 

I have my fingers crossed that it all works out ok.

 

Your 'ink blot and feeble mind' comment made me giggle Jeannie - my doctor was trying to explain the Amsler grid and what I should look for. She told me that with her dodgy glasses her mind sees all kinds so she can only tell me what the books say I am supposed to see.. hahaha I want some of those glasses :wacko:

 

Thanks so much and take care

 

San

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Hello San

 

I really hope you have good success with the plaquinil and no side effects. Keep us informed!

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I also take hydroxychloroquin. I see the opthomologist every 6 months to have it checked. He looks at the retina and asks me to check for loss of color vision with those colored dot number things.

 

He also told me that he knows many patients who take this medication and has only seen one case of hydroxychloroquine poisoning. He feels it is pretty safe. I do know that I was having vision problems prior to taking it and those problems stopped right away when I started it.

 

Don't you just wish that at least something would not need a decision? For awhile I thought I had just used up all my brain cells involved in making choices- that I could not think about one more thing. But eventually I recharged.

 

I wish you the best with this.

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Well it's been nearly 8 weeks now since I started the Hydroxychloroquine. The itchiness has died down and the headaches are soo much better too. No problems with my vision at all so just got to see what the blood tests show next week but all is looking good so far.

 

Had my PFT and ECG last month too and there was nothing out of the ordinary there either so all in all it's been a pretty good couple of months - in spite of the cold playing havoc with the Raynauds. Ah well, you can't have it all.

 

It's now been 12 years (next month) since my Systemic Scleroderma was diagnosed, I may have added rheumatoid arthritis and osteoporosis to the mix over the years but it's not all bad. Having a fantastic medical team and family that 'kind of understand' really helps - not to mention the fab people on here that are able to offer help and advice when you need it.

 

Thanks guys :thank-you:

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Hi San,

 

That's really good news that you're getting on so well with the Hydroxychloquine and that your lung function tests and ECG are satisfactory. I can empathise with the Raynaud's in our damp cold UK climate, though!

 

I, like you, have a fantastic medical team who have been wonderful. It does make all the difference to have consultants in whom we can have complete confidence, doesn't it? :VeryHappy:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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