I don't remember if I told u that Dr. EKRAM said he may put me on Plaquinil! My sister also, after researching, also suggested Plaquinil! How r you doing Kerstin! I appreciate all you and Mary and the beautiful Lady with the sunglasses, also an Administrator for helping me beyond and above the call of duty! If ever anyone here in USA needs me I will do my utmost to pay it forward to anyone I can! Luisa directed me to Hospital for special surgery in NYC & I went this past Wednesday! My appt time was 11AM & I arrived at 10:45! I didn't even get a chance to take my coat off wen he called me in! He told me. All you people in England help him and he had a conference today with Hughes Syndrome foundation! He teaches at Cornell University and helps us to research this COMPLICATED DISEASE, as he calls it! He told me I was also very complicated, but I'm use to that cuz I've had this disease all my life! I'm 62 now and finally got an ANSWER I've been waiting for my whole life after being treated DASTARDLY BY MEDICAL PROFESSIONALS!!! THANK YOU HUGHES SYNDROME FORUM!!! GODSPEED TO YOU ALL! Please keep in touch as I still need ur support! My INR level on increased coomadin was only 1.7 this past Wednesday!
Plaquinil is that a good drug? - Hughes Syndrome A...
Plaquinil is that a good drug?
Hi, thanks for the lovely message and feedback, we all do our best. I am glad you are trying Plaquenil, also keep an eye on those levels of vitamin D, B12 and iron, they need to be good also, and regular thyroid testing. Keep well. MaryF
Mary he hasn't put me on Plaquinil yet? Is that a shot or a pill! I'm still on 15 mg coomadin, Plavix, & LOVENOX shots to keep me covered for Those tiny embolis running up my good leg! I'm nervous cuz my local Hemotologist for first time after calling him with my INR results of 1.7 on all those meds have only gone up .3 since the increase of Warfarin! I am giving him another chance because Dr. DORUK EKRAM (told by this forum that he's a superstar in research for APS) said he'd call him and put him in the picture! I'm very lose to Dr. D BECAUSE 9 years ago when I ended up in the hospital half dead from diverticulitis and having emergency surgery, he came to visit me not because I was in his medical care, but to see me because he wanted to give his condolences to me for the loss of my son! They wouldn't let me die as I wanted to at that time! So the emotional attachment to him is very dear! I know I must do what's best for me, but he's also become a friend after 13 years! Thank you again for ur utmost, unconditional time you spend on this LIFESAVING FORUM!!! You answer everyone! I hope you have a life too and stay well!!! Godspeed
Awe thx for your speedy response and have a fun day this Sunday! Although it is the evening in UK! Godspeed
Thank you Debb for your lovely messages. We all try to do our best as volunteers on here and it's good to know that we Admins make a difference.
Best wishes and God speed to you too.
Dave xx
Yes I seem to be a bit more confused now, than wen I went in there! I'm just going to exercise and eat right and comply with Dr. EKRAM! He told me about the conferences! I was so happy to meet him, I told him it was like going to Hollywood! He told me to sit down and was ver humble! I'm lucky to have been able to see such a star in APS! Thank you Beautiful Lady with sunglasses for ur response! Since I was 1.7 he said he may start me on Plaquinil! I must get tested first for Sojerns and get clearance from my eye doc because I already have issues with my eyes! I keep putting off eye appointment cuz I'm sick and tired of it all! I'll rest a bit and then I'll get up and fight again! It's just hard because I have one leg and other is always in pain ! No one to really help me! My hubby was recently DX'd with Alzheimer's! I will prevail with the help of this Forum!!! You people just about saved my life!!! Thank you for all your unconditional responses and much needed help! Just a bit overwhelmed and will get bak my fighting stance soon! Just need to rest up for my next challenge!
On Plaquenil 200mg/6 years and doing fine..no side effects
Thx Luisa I think you r how I got Dr. EKRAM! Then went on website! I really liked him!
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