Hi. I know this doesnt answer your question but just wanted to say I am getting ready to participate in a phase 3 drug trial. I just finished with the labs and other tests required for it for final...
Hi robyn. i am sorry that you havent been getting any response. This forum seems a little quiet lately. I do read most of the messages but often don't respond. Sometimes I just dont know the answers...
I too am very saddened by this news. I have thought often about her and wondered how her surgery went. I was always watching for a post from her. Makes me sad for her children and family. Such loss...
I thought that maybe you could also try this. Put in a search on your computer for compounding pharmacies in your nearest large town. I tried it for the dallas area and 16 of them came up....
I hope that it is ok to post the name.The one I use is cedar creek pharmacy. Phone number 903 432 2223....
Hello. I am on cellcept , quinacrine hcl 50 mgs, plaquinil 400 mgs. I dont have skin issues but was prescribed quinacrine for joint pain. It has helped me a lot in this regard. I have been taking it...
Hi Kathryn. When i first got diagnose with pericarditis and plueurisy that was the first medication I was prescribed. Even though my doctor kept increasing my dose it didnt do anything for me to...
I wish nothing but good things for you regarding this pericarditis. It really is scary to deal with and especially the unknown. I dont like the thought of heart surgery either. Let us know the...
I know exactly how you feel. I am in the same situation as you. I have never been able to get off steroids since I started them cause every time I get below 10 then I mess up again. I have been...
Hi! Wanted you to know that you arent alone with the pericarditis. It sure can be painful huh? I too have had pericarditis for 5 years but mine has been off and on symptoms not constant. I first got...
Hi Ladies. I want to wish you much success with your weight loss surgery. My husband had lap band surgery and lost just a little weight but he had complications. The port where they would give him a...
Just wanted to add. I dont know if it makes a difference but I also take it on an empty stomach cause thats what my directions say....
I have been on cellcept name brand for one year. I get my med through the patient assistance program. I take 3 500 mgs tablets twice a day. I dont really remember any side effects for me. Hopefully...
Hi! I dont have a suggestion for you on a doctor. Just wanted to say I know what its like not having insurance and then having a chronic condition such as lupus. My first visit to the rheumatologist...
Hi Nicki! Just want to welcome you here and say I know how you feel just wanting a diagnosis. When I first got diagnosed with lupus was when I had to be admitted to the hospital in icu for...
Its always a struggle to get everything balanced out just right huh! My labs have been good for months now, Hopefully this will just be a minor setback for you. I guess we really do have to take...
Just wanted to say hi Redrose. You and I have briefly talked about quinacrine. I have been on it about 3 months now, I just saw my doctor yesterday and he said it is used for fatigue and joint aches...
Hi Redrose. I am getting ready to leave the house so have to make this short. I take the medicine you are asking about and I get it from a compounding pharmacy. It is called quinacrine HCL. I am on...
Hi troll. Thanks for your response. This disease is so frustrating. I have been on prednisone for over 4 years without being able to get off of them. I am still dealing with a current flare and had...
Hi Lynette. Thanks for the reply. I was told by the doctors nurse about the upcoming study. She called me and said he wants me to do the trial and will have more information for me later. I dont go...
Hi healing well friends. I havent logged on here for a long time cause I forgot my password but today I remembered! It has been 4 years now since my lupus diagnosis and things still are not under...
I am currently taking cellcept. I havent had much side effects except for mild stomach upset. All my labs have been good but I am on 1500 mg twice a day. I have been having a hard time with frequent...
Thanks for all the encouraging messages. it just helps to share. I have my appointment with the surgeon on Monday so will know more then. I am dealing with those headaches along with constant ringing...
Hi friends. Sorry to hear that so many of us are feeling bad. I have been having ear trouble on top of my lupus issues. Have had a ear infection since June. Finally went to an ENT who looked in my...
Hi Fran. I just started cellcept after having to take a break from being on 6mp. My liver enzymes were elevated quite a bit from that. Anyway I got approved for it through the patient assistance...
Just wanted to give you a big welcome also. I dont write a lot but this group of friends are so special caring and supportive. I also suffer from reacurring pericarditis. I am currently on a medrol...
Just wanted to say when I was diagnosed my sed rate was 150. I was also in the hospital with a large percardial & pleural effusion at that time....
Hi Chinacat. I have been having chronic pericarditis for 2 years. My sed rate was 150 & I had to spend 5 days in the hospital & icu when this started being a problem. I too had to sleep in my...
Hi & welcome to the forum. I just want to say that my rheumatologist is from the Dallas area. His office is by Presbyterian in Dallas. His name is Scott J. Zashin. You can do a search on his name...
Hi Okie. I am also on aciphex & just yesterday I was reading an add in a magazine for it & one of the most common side effect listed was headache.So did these headaches start since you...
Happy new year to all my healing well friends!! I know that I don't write very frequently but I do read everyones posts & offer quiet support daily. Last time I wrote the doctor was starting me...
Hi Krissy. I live in Texas & I go to a rheumatologist that is out of an office of Presbyterian Hospital of Dallas. His name is Dr. Scott Zashin. I have only good things to say about this doctor....
Thank you to everyone who responded. My daughter is 11 years old. She came into our lives as a drug addicted baby when she was 5 weeks old. We loved her through her withdrawals from drugs & she...
Hi Friends. I know that I don't write much but I do read the messages posted everyday. I am just so frustrated with having constant flare up of my symptoms. I start out with pain in my shoulders,...