Does anyone suffer side effects from ... - Hughes Syndrome A...
Does anyone suffer side effects from taking Plaquenil? I was advised to take it last year but have been very wary. I take Warfarin for APS.
Hi if you have been advised re the fatigue, you may do well with it, also sometimes people find it helps with aching joints etc. I myself had the worst reaction you can have to it... but this was probably due to my other conditions, in particular Psoriatic Arthropathy. However my daughter has been on it since Age 15 and it has made a big difference to her. I do regularly take the trouble for regular and detailed eye tests and am very pleased with her progress. It is slow to work, but worth the wait in her case. Many others on here are on it and have done well. It is a matter of carefully weighed up choice! MaryF
It worked for me and i have multiple problems and it took 6 to 8 months for it to really kick in totally but it is worth the wait as Saint Mary stated of her daughter--But i have to have my eye's tested every 6 months. and if it is increased than i will go to every 3 months.or if they change any of the 27 pills i take per/day.or any new med's i start i have to let my eye Doc. know. it helped my fatigue, joints ,tingling {to an extent}. but every one of us is different because there is nothing text book with our dis-order, so give it a chance .Jet here in the states
Saint Mary!!!!!!! I hardly think so you naughty man... however here is another Mary to help with all your medications! youtube.com/watch?v=HrnoR9c...
MaryF x
You didn't like your given title- I certainly think it fits 
-- not the one title given lightly !! I have three blonde woman that help me threw life right now because of my worsening memory -- i call the my three blonde angels - Jess -- Barb and Jessica-- now Jessica works for the veterinarians office where Casey goes , she is an office manager - she helped me with the grants to allow Casey to have his surgery on Tuesday the 18 th of this month . he will be under anesthesia with a breathing tube and a catheter-- He has only been away from me 4 hours 24/7 since Mary died Mothers day, May 12 th 2013 .He is all i have left from 24 years there with Mary . so Saint Mary i will need your attention on that day -- I will be with him from start to finish .I wish i could do the surgery for him but i can't .Poor little guy :-(. So I take alot of med's that day and pray for the best . so all our other saints out there we need your attention also. a great group you are .it would be appreciated---- non-flipper , worried dad,jitters starting already---- softy Jet -------------------------------------------
Tiuesday the 18th. Duely noted. I shall hold you and Carey in the light this Tues. let us know how it goes for both of you.
prayers for casey... + + + +
Thank You Happee--Casey is so loving -he goes everywhere with me as i already most likely have said -Being a service dog there isn't anywhere i can't take him by federal and state law - I don't take him in the rooms when i am having any type of radiation BUT by law they have to assign a nurse or someone to deal with him while i am in that room and being a chihuahua {smooth coat } you can just imagine the looks i get -even security follow me everywhere. He has more paperwork on him than any other dog they have in their system at ADA the woman Sally told me . He navigates to woman - not that he doesn't like men he just goes to woman. the woman in the blood lab where i go every 3 days just love him - they call him their mascot HA -they would steal him in a minute- I will put some pic's on here as soon as i learn how to do it !!!!! 0 well enough rambling on I guess- THANK YOU ALL -you don't know how much it means to me . he is my world now. --------nervous Ned -me
a chihuahua as a service dog..wow i would have never guessed that.. why was he chosen as one.. i thought they were all larger dogs as ion 30lbs or more.. i love the idea something so little could have such a big job..did it take long to train him?? i am so very interested ...
He wasn't chosen- I trained him - he knows when i am going to have a flare , muscle spasms, bad cramping - he won't walk with me if he senses a muscle problem -- he just refuses to go for a walk -- One of my great Dc's was giving me my back shots and tried to fool him -- no way , she was astonished , she couldn't trick him.If i am about to have a flare anywhere in my body - he knows and paws at me and won't stop till i sit with him. he just does it and 3 of my Dc's have witnessed it several times and all have written letters to attest to what they have seen . He is just so amazing and he still is doing more things all the time - it's just mind blowing - we never know what is next with him.but he never leaves my side - the bond is something else. Jet and Casey
Hi AvsG,
I hope you do not mind that I ask you in what way you do not like warfarin as I know you have selftested? Did it not work for you and how long did you try warfarin?
I am tripple-positive for APS and warfarin made my life so much easier when i started 3 years ago .I have noticed you are on a high range also.
Best wishes from Kerstin in Stockholm
Hi Kerstin, I am fine with Warfarin. It has made such a difference. Recently it was Rosuvastatin' (cholesterol drug) that didn't agree with me. In the past so many drugs I was prescribed made me worse but that was before I was diagnosed with Hughes Syndrome. It's made me very cautious about trying anything new,
Avril x
Everyone is different in their reactions to medication so you won't know until you try for yourself. I personally can't take Plaquenil as I had an allergic reaction but it has clearly been a success for others. I take Mepacrine instead . My philosophy with new medication is to give it a go and ask my GP if I can try something else. I can remember Prof Hughes telling me that Hughes patients can be very sensitive to medication and I think my long suffering doctor would agree!
It's a fantastic drug hasn't done anything for my fatigue yet but balance, falling and walking straight it's brilliant, I have only been on it for about 2 months memory still bad but I am
hoping,
worth a try I would say, good luck hope it works for you
I have tried twice to take it but it has made my asthma a lot worse so GP won't let me continue!
JET Iwill be thinking of you and Casey on the 18th hope all goes well give him a hug from Auntie Sue.
We nearly lost one of our dogs last year to Autoimmune Mediated Polyarthritis and Meningitis, it was a terrible time for all of us including her big dobie sister Hortense and her best friend Jenson the cat.
I am so pleased you are getting help with the bill. Jasmine's cost around 10,000 pounds & wiped put our savings. We now call her our Million Dollar Baby! Worth it though as she is back to her old rabbit chasing best but naughtier as has been very spoilt.
Xxx
I have been taking Paquenil and 320mg Aspirin daily for 4 years....no problems and feel great!
they say that the best drug has been shown to be plaquinal but unfortunately i am allergic to it...so i have been taken off coumadin and put on plavix..
I took plaquenil for 7 years for a lupus-like syndrome, with MS like symptoms. It did great for me. Most everything went away except migraines and fibro-type things. I had no side-effects at all, but it does take a long time to work completely, but little-by-little I felt better. I just went on it again starting in December, and am still waiting with hope.
