Good Morning all. On Dec. 2, 2013 I went to my rheumy and we decided I would stop the Plaquenil to see what if any help this medicine has been providing. You know you never know how much you need something, until you don't have it. Well, its been 3 weeks and I don't feel any different than when I was taking it. So my question is, could this mean I don't have autoimmune disease at all. All my blood tests always come back normal, except I did come back positive with the HLA-B27 protein. Does everyone who has autoimmune disease take plaquenil? Thanks for your imput
I take plaquenil but my blood work showed ana positive and my liver levels was high. Then I started taking plaquenil and it all went back to normal. Except during the summer I was out in the sun to much and I tested positive for lupus. My face was a mess with brown spots everywhere.
I am on plaquenil, I started in June of this year. I was diagnosed with lupus, I also have fibromyalgia, sjogren desease. my blood work is ana positive.
It would be wonderful if you don't have an autoimmune or just don't need the medicine anymore.
My new rheumy doesn't think I have lupus but still has me on it. I am like so if I dont have it then why am I on it? I am still confused on how it really works.....
I currently take plaquenil and prednisone . Honestly your next lab test will tell you if you dont need the plaquenil and in my opinion autoimmune illnesses don’t always show symptoms
I’ve been on plaquenil over twenty years. The few times I stopped it, my diseases progressed and never went back to the way they were before I stopped it. The specialists in immunology etc… explained it to me as follows. Plaquenil is a disease modifying drug, it keeps the disease from getting worse over time but doesn’t do much for the symptoms already present. In my experience this has been true. So just because you don’t feel any different does not mean you don’t have an autoimmune issue. Hope this helps.
I understand your frustration. Ten years ago I felt aweful, ana positive, ss/ro positive, liver function all out of whack, mild malar rash, joint pain, rashes from the sun. I have been on plaquenil( I am allergic) imuran and cellcept. I recently had to change rheumy sand the new one decided I don’t have lupus and has taken me off cellcept “to see what happens”. It has been a month and I feel aweful. Joint pains and fatigue are terrible. But unless something serious happens he told me to wait till spring to see him. Plaquenil I some of many things people can take, it is usually used for milder forms of lupus, where people don’t have major organ involvement. All I can suggest is to keep a record of all your symptoms, it can be depressing sometimes, that’s the best way to know if something is happening to your body. There are usually a lot of blood tests before they decide what you have. I am going through them all again. All the best to you and I hope you don’t have any sort of autoimmune disease.
I have an interesting history with plaquenil. I am now 65 when I was in my 40's the doctors said I had lupus like symptoms. They didn't want to use the word lupus back then, they said I had Hashimoto's thyroid disease. I was on plaquenil 2 times a day for years. About 8 years ago I developed a heart problem and they took me off plaquenil. Last year I started the Medifast diet that is processed soy based, it was great for 3 months! Then as I lost almost 30 lbs. I started to feel terrible. My thyroid crashed and I developed the malar rash on my face. The processed soy brought my lupus back, I went back on plaquenil right away. It has helped me so much, it's taken about 10 months to come out of that flare. However, I am not the same as we all know. All of my tests are negative now my ANA was always positive for years.
I guess all you can do is see how it goes, I was fine for years until the diet triggered the flare. Just remember it takes a few months for the plaquenil to take effect when you start again.
Zippy, it's the soy isolate protein they use in everything. Wish I could find a diet like it that uses a better protein. Did you gain your weight back too?
I was diagnosed with lupus by my first rheumy a couple of years ago and i was immediately put on plaquenil. My husband and I really did notice a difference. Recently, I changed to a new rheumy and he said that if it weren't for the lab work and diagnosis from my 2 years ago, he would say I did not have lupus. I has me dropping down to one plaquenil a day. I'm wondering if the plaquenil works so well that makes the lab work look normal? I still feel bad and have flares, but now I don't know. Maybe I'll wait and see how you do. :)
http://en.wikipedia.org/wiki/HLA-B27 here is link from wikipedia which explains what that test would have possible shown you might have. MRI and Xrays also would be used to help diagnose it. I have AS and just a simple x ray showed in my case but i also have pretty severe case according to radiologist plus my doctors.
I am not sure why your doctor put you on plaquenil for AS as it is not known to slow it down. So am surprised. Have you asked your doctor why they did and what they think you have since all you blood tests are fine?
Hopefully, you just are tired from raising a child and working!! that would be excellent news ...best present ever!
I sincerely ask your doctor why you were ever put on plaq and what their diagnoses is since all tests are fine. Just does not make sense to prescribe something not needed but you never know.
I've been on plaquenil over twenty years. The few times I stopped it, my diseases progressed and never went back to the way they were before I stopped it. The specialists in immunology etc.. explained it to me as follows. Plaquenil is a disease modifying drug, it keeps the disease from getting worse over time but doesn't do much for the symptoms already present. In my experience this has been true. So just because you don't feel any different does not mean you don't have an autoimmune issue. Hope this helps.
It also is used in those of us with organ involvement- as a DMARD it helps make the flares less severe and slows the progress of organ damage. It is used in multiple different immune disorders No one is quite sure how its works- only that it does
I was diagnosed with mild lupus, Raynaulds and Sjogrens. I was put on plaquenil right away after approximately 5 months, I feel little difference, in fact the past few weeks have been worse. My joints all hurt so much, my skin is so dry and rashy, I'm having problems with nausea in the mornings (no I'm no pregnant) and my back hurts constantly. She also put me on methatrexate sp? and folic acid for arthritis, still no help. Some times I can barely put any weight on my legs or move my hand because of the pain. I go back next month for a lung test as I have trouble getting deep breaths at times or even yawning. Really frustrating.
angelwing I was told it would be at least a year on plaquenil before I would notice a difference. I found that to be true. It was a slow progression. It did not help the Sjorgrens or Raynaulds...not sure it's supposed to. When I started taking amlodopine for hypertension, the Raynaulds got considerably better. As for the methotrexate, my joint pain was noticeably worse. I feel better after being off of it. I have had the breathing troubles too! I have had X-rays, but no explanations...that drives me crazy. Mine is worse in the mornings and when I lay down at night. I wish I had an answer for that.
angelwing said:
I was diagnosed with mild lupus, Raynaulds and Sjogrens. I was put on plaquenil right away after approximately 5 months, I feel little difference, in fact the past few weeks have been worse. My joints all hurt so much, my skin is so dry and rashy, I'm having problems with nausea in the mornings (no I'm no pregnant) and my back hurts constantly. She also put me on methatrexate sp? and folic acid for arthritis, still no help. Some times I can barely put any weight on my legs or move my hand because of the pain. I go back next month for a lung test as I have trouble getting deep breaths at times or even yawning. Really frustrating.
I was put on plaquenil b/c my rheumy suspected inflammatory arthritis from the get go. Sometimes he thinks it might be RA, but I have no joint damage/deformation. I also take anti-inflammatory,lyrica,cymbalta and abilify. So I wonder if I don't feel any different b/c of all the pills I take besides the plaquenil. Although today I am EXHAUSTED! I have no appitite and i'm practically falling asleep just driving to and from my kids school.
loriken214 said:
Plaquenil didn't work for me. I would like to know why you were on it, too!
Bless your heart....I know it is a gamble when they put us on different meds trying to find ones that will help! I'm back to square one...prednisone....and now we're trying injectible methotrexate. I'm on lots of other meds for the side effects from the prednisone, too.
My liver is acting up so we had to stop the metho for now.
Boy I hate that prednisone! My dr. said using prednisone is like saying, "we don't know what's wrong but we do know prednisone will help somehow." I've never used methotrexate. What is that supposed to do? My liver is not happy now either. My latest blood work shows everything to be normal, except the liver. Red blood cells are high, bilirubin is high and ALT enzyme is high. I wonder if that's a side effect of all the meds. Hope you get to feeling better soon. loriken214 said:
Bless your heart....I know it is a gamble when they put us on different meds trying to find ones that will help! I'm back to square one...prednisone....and now we're trying injectible methotrexate. I'm on lots of other meds for the side effects from the prednisone, too.
My liver is acting up so we had to stop the metho for now.