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Behçet's UK
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Plaquenil???

Hi everyone, i have been on Plaquenil 200mg twice a day past 1 and half years and doesn't seem to help much, I have been reading that Plaquenil is only for Lupus, and i have Bechet's. My main symptoms are Vasculitis and Uveitis. I am taking other medications such as Cellcept, and Humira.

Do I still need to take Plaqueil??? does it really help with BD????

Thankyou:)

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Hi there. They first thought I had a lupus like disease and placed me on it. When they determined it was more autoinflammtory the doc said Plaquenil was useless and took me off. He said I was on so many other drugs it was worthwhile to get off it. I would say that I am still.not stable so I am not sure what it did or did not do, to be honest.

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I was on it for suspected lupus but we discontinued it with my Behcet’s diagnosis. It felt like if maybe made the symptoms a little less severe (not always noticeably). I would talk to your doctor about why you’re still on it and if it can be stopped.

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I was also first diagnosed with lupus and on plaquenil (hydroxychloroquine as some brand names are different). I also was told to come off of it when diagnosed. I also thought it wasn’t doing much but as soon as I reduced the dose I had swelling in 8 or more different joints. I think you don’t notice the effect of it working because it builds over time. Saying that it may be different for different people. I was shocked at how my body reacted to just reducing the dose. 🤷🏻‍♀️🖤

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You have been on this drug for long enough to know if it being effective for you.

If you don't feel you are getting results with it ask to have your drug changed.

Many BD sufferers take colchicine , a corticosteroid, to assist the ulcers and some joint inflammation.

Sufferers of regular uveitis are often given NSAID ( non steroidal anti inflammatory drug) called azathioprine, this drug is also used to help many other auto immune , inflammatory illnesses and is often used to help you maintain remission while weaning off steroids.

I don't know wether types of vasculitis use plaquenil but as others have said it is more often used for Lupus or as an alternative to prednisolone to assist with ulcers and skin inflammation and certain joint issues.

Do you also get any eyedrops or ointments for eye hydration?

It might be an idea to look up drug options in your country and print them off to discuss new medication plans with your consultant that you would like to try.

You have the right to take an active decision in your treatment choices.

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Ji would like to clarify a couple of things, Blearyeyed, Azathioprine is an imminosuppressant and Colchicine is not a steroid--It has long been used to treat gout, but has been proven effective at conrolling at subset of Behcet's symptoms in some patients. I think its important to be accurate when discussing medications.

Thanks.

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Hi,

Yes , definitely thanks, that is what happens when you rely on info from the GP!

Azathioprine , an immunosuppressant , often used for many conditions, including autoimmune diseases, to reduce steroid use and as an alternative to NSAID medications when they are not affective.

Often used, as is methotrexate , as with my friend , for extreme versions of skin issues like eczema.

Colchicine , an oral corticosteroid reducing agent , most commonly used for gout, does that make it a steroid?

Perhaps you can help us with that detail, and thanks again for the specifics on these drugs definitions.

Which drug combo do you use ? I am sure Stm252 would like as much help as they can to use at their appt. and get on the road to recovery, any more detailed advice would be really useful for us all.

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I've been on colchicine for months. It's not a steroid. mayoclinic.org/drugs-supple...

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Thanks,

Most importantly , have you found colchicine has been good for you and would you recommend that poor Chiatali11 asks about the possibility to go on it to her GP or consultant ?

Are you on any other drugs too, like Azathioprine , ointments , sprays etc. that are having a positive affect on your symptoms that you could also list, with what you use them for, that they could also ask about, that would be really helpful for them.

Thanks

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It's hard to say what would benefit Chiatali11. I feel like with all these meds it's trial and error. I am new to this myself and trialing my own meds ATM (Prednisone, cholchine, Otezla.) Among a ton of others for the associated sxs. Not sure what works and what doesn't at this point. :( I know Plaquenil wasn't doing much. That I do know. I'm wishing all luck finding the right combo of meds. I think it's difficult.

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Yes, with you there!

A contributor I follow called JulienF , actually wrote a post about the various combos he had been on over the years in the US, and what is working well for him now.

Obviously, the names of some of the drugs change , or you need equivalents for ointments and sprays etc in other countries, but it did seem like a good piece to print off and give to your specialists in terms of helpful data, or use as a start for discussing what options are available to improve med. regimes on BD.

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Oh Sorry,

Also just realised brain fog made me put your name on an earlier reply to pixie and not Chiatali11, but glad to hear from you anyway.

How is it going for you?

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I have taken plaquenil but same as you I didn’t really feel it was helping so I stopped I’m not a medical professional but if something isn’t working I cut it out. I have been feeling the same for months the only difference I have noticed is the rash on my face coming back but that actually is from lupus as I was diagnosed with both lupus and becets.

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I was on this and I have Behcets but had to stop after I developed Steven Johnson syndrome. Since then consultants have tried a host of different medication to try and control my flare ups with little success so far. I have been on humira, cellcept, azathrapine, aplemilast and I am due to start a new medication today which is an injection once a day to run alongside methotrexate... Hoping this combination will work. I also take colchicine.

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Hi Alex, I looked up your previous posts and saw the ones from four years ago re your eye. I was wondering how you got on? Was that the Stevens Johnson reaction? I’ve had SJ after applying a sulphur based cream prescribed by a dermatologist in the ‘nether regions’ . Lesley

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Hi there, I had Stephen Johnson after taking hydroxychloquine. My eye problems have continued despite trying numerous medications. I am now registered blind. I started a new medication yesterday called anikinra which I need to inject daily. They are hopeful this will stop my flare ups.

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All the best, I would be interested to hear how you go.

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Hi Alex, do you know the name of the injection you will be having alongside Methotrexate? Regards Lesley

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