Sticky Blood-Hughes Syndrome Support
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New here, may be in wrong place?

I'm not sure if I am in the right place. I have had Rheumatoid Arthritis since about March 2011. I was 29 and terrified because the doctor I was originally sent to just pushed me on painkillers. After I left him, I didn't go back to a doctor for my RA until this passed week. I trust this doctor and feel he has my best interest in mind but am nervous about the medication because I've been told RA Medicine is dangerous. So he's put me on Plaquenil 400mg/day. I was doing searches on that and found myself here on this site so I joined. But, now I see it's a site for sticky blood syndrome which I am not diagnosed with so I'm assuming that it may not be too helpful for me.

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Hi purplemom

Yes this particular group you have landed on is for sticky blood. There are lots of arthritis groups on here, if you browse through the community’s from your home page you should find some you can join.

Good luck

L 😀 x

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Hi yes this is a forum for Hughes Syndrome/ Sticky Blood and yes we also get prescribed Plaquenil, it's a common medication in autoimmune rheumatology diseases. There is a forum for RA on HealthUnlocked I think. The best thing to do is go up to the top of the page and unfollow us and then go to "find a community" where you can look through the index of all the communities.

What I can tell you is not to be worried about taking that medication. Also it's a good idea to start taking it slowly, so just 200mg every other day, with food. If you are managing that ok for a couple of weeks, gradually introduce a dose on the days you are missing until you are taking 200mg once a day. Then increase to the 400mg in the same way. If you do experience any symptoms just stick where you are until they wear off. Then start to increase again.

Good Luck

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I hope you find the right forum for your needs, it does help to be on the right ones, best of luck with your Plaquenil. MaryF

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Hi purplemom

I am 48yrs old, and have been taking Plaquenil for palindromic rheumatism (RA) for just over a year now. I was forwarded your questions from the RA forum.

Palindromic Rheumatism just means that my RA "flares" hop around - today may be wrist pain for 36hrs, tomorrow could be ankle pain for two day....it is very unpredictable but the Plaquenil has been pretty successful with keeping flares away and managing my bloodwork.

400mg/day is the max doseage for Plaquenil - I know this because I was accidentally taking it wrong for a while, and that is bad. A rare but main side effect is to your vision. You will need to get a special eye exam annually, and should have had a baseline exam just prior to beginning the Rx. They are looking for "metallic" build up in your eyes and although it is not common, it definitely should be monitored.

I have had zero issues with the Rx and it has helped me A LOT with keeping flares and fatigue at bay, although not eliminating them completely. When I get a cold or virus, flares will pop up.

Feel free to reach out anytime. I hope you have success on the med. From what I understand we are on what is bascially the least harshest of the RA protocols. Make sure you ask your MD about Vitamin D supplements and B12, also!! :)

Best,

Michelle

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LUpus Patients Understanding & Support (LUPUS) is for SLE, but since SLE, RA and MS are genetic cousins and there is a crossover, you will be more than welcome.

Plaquenil, an antimalarial, is a standard drug. Usually,it is better to start on 1 tablet (200mgs) to see whether your body tolerates it and then move to 2 tablets (400mgs).

If you are interested, you are welcome to contact me.

With good wishes,

Ros

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Hi purplemom524,

I have SLE Lupus and I've been on Plaquenil 300mg/day (I weigh 115lbs) for over 4 years and I haven't had any problems with it. Apparently Plaquenil is one of the least harmful drugs for this class of autoimmune diseases and doesn't have many side effects. The only thing is that you have to get plaquenil-specific eye tests every 6 months but apparently eye damage is rare. It isn't even classified as an immunosuppressant apparently. My doctor said it is common for patients to be on this medication long-term, but I have SLE so that may be different.

Like others have recommended, joining a rheumatoid arthritis forum may be more helpful. Also, before starting at a different dosage 200mg as others have suggested, I would consult your doctor before you do a gradual increase even though it is common to do that. He probably has better judgement/clinical reasoning if that would work well for you/your condition, and help monitor that increase if you do go on that.

Anyway, best of luck and I hope you feel better soon! :-) xx

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Just a comment on the eye issue. There was a 7 year long-term study at St Thomas' regarding toxicity of the eye and Plaquenil and found favourably there were no issues for the patients.

You are right to mention that before taking Plaquenil (hydroxychloroquine), a visit to the ophthalmologist and annual, is recommended.

The reason I mentioned tolerated refers to a condition for some patients when starting Plaquenil at doses higher than 200mgs a day. For some patients who start on 2 tablets a day (400mgs), the eye muscle is affected and can cause blur vision, which can be frightening. However, it is only the eye muscle and stopping Plaquenil ends the problem.

This is why it is recommended to start with 1 tablet (200mgs) and then increase to 2 tablets (400mgs) etc. This seems to prevent this rare effect.

I have been taking Plaquenil for a very long time, without problems. Plaquenil is also a mild blood thinning agent.

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This is useful information, thanks! And yes, it is good to know that starting at a lower dose is an option for those who don't know.

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I'd just like to add that at last years APS patients meeting, Prof Hughes said that a dose of 200mg a day did not even need eye checks as it was so safe. I think most of us do eye tests anyway so it does not hurt to mention it at that time rather than make a special visit.

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I been on 400mg daily and has helped with my RA but symptoms very up n down.was told it would help with my APS too

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Thank you all for the helpful and informative advice. I've scheduled an eye exam for the end of the week and noticed that, except for a bit of nausea for about 2 hours after taking the Plaquenil, it seems okay for me. I am joining an RA group in order to try to find information more centered at my issues but I appreciate all the help you all have offered me!

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