So i have positive dsdna, joint pain, fatigue, and a few other wiered symptoms. My rheumatologist wont give me the lupus diagnosis bc i only have 3 out of 11 symptoms for lupus. But im starting Plaquenil today. She is diagnosing it connective tissue disease with lupus tendencies. Im just wondering how others got the diagnosis and if this is normal to start the medication for lupus without the formal diagnosis?
They started me on Plaquenil before having a formal diagnosis. I had a major allergic reaction to it so tried Imuran for a few months. I felt better on Imuran, but my liver didn't like it so then went to Cellcept and have been on that since Oct '11. I started on Plaquenil in April '11 and wasn't formerly diagnosed until Sept '11 and I think I was one of the lucky ones as I've heard many other people taking years (although it sounds strange to use the word "lucky" associated with lupus). I'm still pretty new to all of this, but it's always good to seek a 2nd opinion...especially if you're questioning your current rheumy. Best of luck to you and I hope they can find some relief for you!
You only need 4 out of the 11 to qualify for a lupus diagnosis according to lupus.org. check out this link
http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?ArticleId=2241
I went to see my Dr because I had a rash all over that would not go away. This was back in "06" I had a biopsy done on my skin and was told it was Lupus. Then last year I started to get very big lumps and they were very itchy and painful and I had thought maybe they were bug bites. When they spread I knew I needed to see my Dr. I went to see the dermatologist again and they did another biopsy and I saw a Lupus Dr. who took my blood. I was told in less then a week I had SLE. I am not on anything for my Lupus. I am also not on anything for pain. I have an extremely bad stomach and every med I take makes me sick, that includes tylenol. So I rely on my heating pad. I have tried Plaquenil but the pain in my stomach wasn't worth it. I would get a second opinion because if you don't need to be on the medication you should not be taking it. Read up on the side effects after taking that medication for a long period of time.
I was diagnosed in 1999, in Canada, based almost entirely on the blood work. The anti-dna test was four times the number required for a positive diagnosis. The rheumatologist said she was thinking it was going to be RA because she couldn't identify four symptoms. When she saw a picture of me taken at a wedding in the summer that clinched it. the photo was overexposed and my face was washed out. The butterfly rash was there as "plain as the nose on my face." I saw here in the summer time for the first time when my face was tanned and the rash wasn't obvious. It rarely is although I can see it from time to time. So, my point is with confirmed blood work it probably is Lupus and a fourth symptom is likely to show up. At least get someone with some photography skill to take an overexposed picture of your face and see what happens. Also, ja second opinion never hurts.
I too 2 years ago had many symptoms joint pain, fatigue, Raynaud's, positive ANA, body rash mixed connective tissue, anemia, celiac, dermatitis herpetiformis, hypothyroidism, ADHD and more, still the doc didn't want to give me the diagnosis of lupus. He gave me plaquenil 400mg a day, within 4 weeks I felt like it was a miracle, after 3 months I began to get stronger.....it's worth taking it. My ophthalmologist saw me every 3 to 6 months and assured me I am on a low dose to have to worry about eye damage..... good luck! Mo
I'm very sensitive to medications as well due to irritable bowel syndrome, but my rheumy told me to start with a small amount every other day while taking nexium to protect my stomach. It took me about two months to work up to full dose, but it did miracles for my face and fatigue! I no longer need the nexium. I was getting huge cysts that were connecting together under the skin and were very painful. The plaquenil cleared them up and now I only get smaller infections neared the surface that involve the follicle...not quite a pimple. It doesn't come out that nice for everyone, I know. But, if you ever wonder about trying again... : )
prtyblueyz said:
I went to see my Dr because I had a rash all over that would not go away. This was back in "06" I had a biopsy done on my skin and was told it was Lupus. Then last year I started to get very big lumps and they were very itchy and painful and I had thought maybe they were bug bites. When they spread I knew I needed to see my Dr. I went to see the dermatologist again and they did another biopsy and I saw a Lupus Dr. who took my blood. I was told in less then a week I had SLE. I am not on anything for my Lupus. I am also not on anything for pain. I have an extremely bad stomach and every med I take makes me sick, that includes tylenol. So I rely on my heating pad. I have tried Plaquenil but the pain in my stomach wasn't worth it. I would get a second opinion because if you don't need to be on the medication you should not be taking it. Read up on the side effects after taking that medication for a long period of time.
I am on something for acid reflux already due to having ulcers in the past. Doesn't help. I just had surgery on my neck yesterday to remove to cysts that were under my skin behind my neck. Have had surgery before for cysts that became infected and was put in the hospital for a severe bacteria infection. Been dealing with them pretty much all my life. My mother gets them and my aunt as well. My daughter is already starting as well.
Thank u all for your info and support. I feel very lucky to have people that have this disease to talk to. Family and friends just dont understand and keep saying well mayb its not lupus and mayb you wont get severe problems. But its not even about that just nice to have someone who is in the same position as me i quess. Thank u all again.
Thank you for sharing!
mo said:
Thank you for sharing!
I actually just started plaquenil tonight. I have had so many Lupus symptoms for years now but the blood tests don't show any connection to Lupus. My rheumy told me start plaquenil as a trial. I have had recurrent pluerisy, pericarditis, extreme fatigue, sun sensitive, gastroperesis etc. I was afraid at first to try it but after all these years of being sick and getting out of breath easy due to inflamation in my chest wall etc I finally broke down and took it. I am hoping it's my miracle pill. Even if it just helps with some symptoms I'll be happy. The bottle says take 2 a day so I just took one tonight, just in case I have an allergic reaction. I heard of many people that it helped for many years. Be well, Alley
Alley said:
mo said:Thank you for sharing!
Im actually starting my first plaquenil tonight as well. What exactly is gastroperisis??? Also you dont have lupi
us but you r trying the plaquenil to try.
I have lichen planus which is an incurable skin disease that can be managed with meds" says my dermatologist. She did a biopsy on my arm because some of my rash didn't all look like lichen planus. After the biopsy came back she did an ANA and accordng to my dermatologist and my rheumy if you are ANA positive you have lupus. I have the extreme sensativity to sunlight < which just started last spring, skin rash on extremeties and upper chest and back, mouth sores and mild fatigue and patches of no hair.. I asked my rheumy if there are different kinds of lupus an he said i have SLE which is the worst kind. from listening to some of these other "victims"of this disease i think they had lupus for years and years before they were diagnosed. I don't think there is any "normal" to this disease. my first visit to the rheumy was in dec. h e put me on plaquenil. and my mouth sores are gone and my patches of no hair are getting bette.r but you needreglar visits to an opthomogist. i have glaucomo but that started before plaquenil. I am 72 and have been married for 52 years. I have a great husband who is a great help around the house since my fatique. I have great family support and I know i will get help from my a daughters, son and daughter=in=law. I guess we hve to trust the md's we go to or find another. I live near nashua nh and if i don't get the advise localy i can always go to boston. think positive!!!
freightliner
Cindy
I also have hypothyroidism. I've had that for forty five years. I take omeprazole for gurd. I signed up for he lupus study and it is at my rheumys office but he says i'm not sick enough (yet) I don't understand how some people that have lupus has friends and family that don't understand this disease, I know as soon as i was diagnosed my kids were getting all the info that they could about this crazy ad unpredictable disease.
freightliner
Cindy
Hello Walter28. Just because you’re not diagnosed as lupus right now doesn’t mean it won’t change later. Symptoms come, go, progress, and persist. It’s very unpredictable and not easy to definitively diagnose. I suggest you to keep a diary of your symptoms, even the less bothersome ones so you can share that information with your doctor. My daughter lost her bladder and behaved strange during a flare and I found out from her rheumi she had signs of seizure. 
I write down everything as it occurs incase a new problem arises that she needs testing for. I have lupus symptoms now too and have developed a facial rash this last week. My son has the butterfly rash and is about to get a biopsy too. I’m paranoid that we were exposed to something that triggered lupus in the 3 of us. We all 3 began having symptoms in 2011.
Why would you take this medicine (Plaquenil) when you aren't sure if it is Lupus? I was diagnosed with Lupus in 2011 and haven't started any meds yet. I'm not saying I will not take any, but the doctors are not going to use me as a guinea pig. Be careful!!!!!!
When lupus was just a possibility with me, I was willing to take plaquenil because I was in so much pain. My quality of life was worth trying this med. The risks involved are statistically very low. I am feeling so much better, pain and fatigue wise since I started. I think it has to be relative to your particular symptoms and degree of pain. I'm happy for you that you don't have to take anything!
Panda Bear said:
Why would you take this medicine (Plaquenil) when you aren't sure if it is Lupus? I was diagnosed with Lupus in 2011 and haven't started any meds yet. I'm not saying I will not take any, but the doctors are not going to use me as a guinea pig. Be careful!!!!!!
My first episode of lupus presented in 1993. By request my doctor treated signs and symptoms and lab values. However I did not want the diagnosis of lupus in my medical records for insurance purposes. Approximately three years ago things had progressed to the point that I was started on plaquinil which ended me up in hospital on several occasions. Am not taking any meds for lupus now other than mobic for joint pain. I now have lupus in my medical records and after 32 years of service for my husband he will no longer be retiring with health insurance. I am an RN and have been on disability for 7 months. Even though I can draw on Medicare in two years I cannot get health insurance without paying through the nose. Wish I had purchased some insurance prior to having diagnosis recorded. Just something to think about. Sure makes following through with retirement plans difficult.
my husband divorced me after 8 years because I couldn't do everything for HIM, when I was diagnosed with lupus, my meds for all my auto immune diseases is over 2000 a month, I got 3 months worth on his insurance on march 1, march 4th divorce final and no prescription coverage, I have medicare a and b at the cost of 148.00 a month but I couldn't afford the medicare D 99.00 a month for the premium and 600 a month co pay. I will have to eliminate a lot of my medication in the coming weeks. I feel for you, it's not fair.....