Hi Madison104, I just read your post, you said you were on plaquenil for 4 yrs than you went off of it. When my specialist put me on the med he said I would be on it for life. I did not know you could go off of it, I know you said you are back on it how long were you able to go off of it? I don't mind taken it as long as I don't have the systoms I had befor I took it. I have break outs with skin lesions mostly on my face and chest now. Their almost like shingles but not all together they really hurt and when I get them I have to go back on prednisone for about a month. Now that I mind as I get side effects from that. Do you mind telling me what systoms you had befor you were told you had lupus. I am glad to here the plaquenil works for you so well.
Hi jl....after being on the plaquenil for the 4 years with the prendisone, I had quite a long remission. I stopped the meds myself. I did quite well for a while, but my disease did come back with a vengence it seems. My doctor told me, at my last visit that he wants me now to stay on this plaquenil and he does not see me coming off of it. I still, have had no side-effects, maybe a bit more acid-reflux, but my tagamet does seems to be helping a lot.
Before I was diagnosed with Lupus I was very sick. At age 20, I woke one morning and all of my joints "froze" or locked may be a better description. I was admitted into the hospital for acute arthritis, but had no other symptoms at that time.
At about 22 or 23 I began with a horrible fatigue. I could sleep up to 14 hours a day and still feel so very tired. I was losing weight for no apparent reason and I would get a HORRIBLE rash whenever I went into the sun. I thought I was allergic to the suntan lotion that I was using. I had repeated kidney infections and a LOT of joint pain and muscle pain. My hair began falling out and it was not until my hairdresser, gently mentioned a bald spot in the back of my head that I could not see, did I realize just how thin I was getting.
I had little appetite and a LOT of hives as well. These symptoms did not always appear at one time, so for many years, not having insurance I was in and out of the ER where they basically treated me like a hypochondriac! It was horrible. I even had mouth ulcers.
The nurse where I was working in dispensary told me to see this Rhemy doctor before the pending lay-off, because I would lose my insurance later on. Anyway, after seeing this doctor and getting my diagnosis FINALLY, when seeing the work nurse, to tell her goodbye as I was going out on disability...she said to me "you have Lupus don't you?" In my dismay I asked her how she knew. Come to find out she has previously worked for this Rheumy that she sent me too. Bless her...her suspicions were correct but she did not feel that she could tell me what she suspected. She simply "firmly" urged me to see this doctor before the lay-off. I contribute my health getting better and getting the right treatment to her. We never know who will cross our paths and for what reason.
Sorry this is so long...I hope this is helpful. I will continue to stay on the plaquenil...probably now forever...but I never say forever, because we just don't know. I hope you don't have to deal with those symptoms anymore. It is hard when medication that we need causes us such discomfort.
I am wondering about the best time to go on Plaquenil. I was diagnosed with apparent SLE about a year ago. My symptoms included transient lymphadenopathy and chronic, "mild" acid reflux/gastritis. Taking 20 mg. Aciphex once a day for that.
I may or may not have the malar pinkness lupus rash as I was diagnosed with rosacea years ago. I am extremely fair skinned and spicy foods, heat, hot water, stress, cold wind, sun, etc. all cause pinkness in the malar area. But then it mostly goes away when those triggers are gone (within minutes typically).
I have never had fatigue, joint pain/weakness, kidney issues, etc. But I do have persistently slightly low C4 levels. I am ANA positive with nucleolar and also homogeneous patterns. (but highly nucleolar) Also, I'm anticardiolipin positive, but no clots to date. I'm on 81 mg. aspirin a day for that. I have positive anti DS-DNA levels that have risen consistently since I have been tested, but they're below 50.
My rheumatologist has not recommended I go on Plaquenil yet because she says that doctors don't treat labs. They treat symptoms, ie. if I had no positive labs, but had the other symptoms, they'd treat me. Has anyone been in this situation? I don't know what to do. I'm worried about going on a serious medication for the rest of my life, but if it could potentially help prevent any flares, then of course, I'd like to consider it. Looking for any advice you would like to offer. Thanks! Happy Holidays!
hi !! im on hydroxychloroquine for my sle , i have almost every symptom including joint pain and weakness . Since using the anti-malarial med i have found most symptoms have eased significantly and i lead a pretty comfortable life . Hope you get the answer your looking for !! good luck x
Hi again Madison, I have the same symptoms, they thought I had it back in 1988 when I had to go to the hospital and was there for almost 2 wks. But than they said no as I didn't have it as I didn't at the time have the skin issues, or loss of hair. How could they tell about my hair as I have curly hair and its very thick. But I did have times where my elbows, knees would swell up and become red. The dr I saw at that time thought it was a reaction to something, gave me prednisone of course it went away. My symptoms got worst after leaving the hospital in 1988, they did'nt have a clue. I continued to see differant drs, specialist you name it, the only thing that kept showing up was a positive ANA. Well anyway after years of being in pain like you with my muscles and joints, it went into full blow lupus with lesions that covered my my lower body, than effected my hands so bad I couldn't work. Even on the medication I still have out breasks on my skin and my joints will start up real bad. Oh well it is something I will have to live with and symptoms are treated as they show up. I hope someday someone will find a way to correct the problem, as my dr said it could also be passed on to our childern. Have you been told that? Well I also wrote a book here, sorry when I get started I just have so much to say,especially when Iam talking to someone else who has it. Well I guess we have to hang in there and keep faith, am glad you answred back Madison. Keep the faith jlfrrll
Hi jlf....I know what it is like to feel confused on top of not feeling well. And yes I have been told that they think now that we could pass this on to our children. My daughter is tested from time to time as she suffers joint pain and muscle aches now.
She has a few syptoms, but nothing major yet. It is discouraging no doubt.
You hang in there too.....and know that I am thinking of you and wishing you well.
Thank you for sharing..
Heidi, my Rheumy gave me that very same speech of lab results having to change and show something bad happening to my body before really classifying anything based on symptoms. She DID, however, put my on Plaquenil - though I ended up taking myself off because of her stressing that it was being used preventatively and that I may never have Lupus and that if I did, it may not be diagnosible for a couple of years.
I've realized that the beginning process of Dx'ing this disease is very confusing. I'm on my second Rheumy and if there was another that wasn't associated with the one I'm currently associated with, I'd probably seek a 3rd opinion. So, I agree with Heidi and VeeJ. Any time you don't feel comfortable with what your doctor tells you, you have a right to a second opinion. It is your body and you need to know what is going on and how to stop it or make it better. Do what feels right for you. Just because you seek a 2nd opinion doesn't mean you can't return to the original doctor if you decide to. Just make sure you ask all the questions you feel you need to ask. That has been my problem. I walk out thinking I was told one thing, and go back for a follow up to discover I didn't understand. It can be very disheartening and frustrating to think you have answers only to discover you have more questions.
Originally Posted by heidiclouser
I'm glad to hear that one doctor actually states he treats the symptoms not the labs. Many lupies complain that their doctors are waiting for labs to change before treatment.
I agree with Veej that a second opinion might be helpful. If you had symptoms such as fatigue and joint pain I might vote for plaquenil but I'm not sure what good it would do without those symptoms.
Thinkfast, hi. How long has this been going on? Isn't lymphadenopathy indicative of a malfunctioning immune system, at least somewhat?
For the record, I don't think Plaquenil is really considered a "major med", at least not in the sense that steroids and immune suppressants are "major". Unlike those other two classes of meds, it modifies but does NOT suppress the immune system. The "sticky posts" contain reading resources. Have you checked them out to see what the *top* rheumies say about its safety & how valuable it is in keeping lupus in check?
In your shoes, I'd go for a 2nd opinion. I hope others chip in soon. Best wishes, Vee
Well, I haven't posted in a long time. But after switching medical systems and all my doctors going on two years ago, I am more comfortable in my medical care. My most recent rheumatologist reviewed the three-inch stack of my past four years' medical history and all my labs and tests; and he concluded that it is far more likely that I have Sjogren's Syndrome than Lupus. He agreed with my prior rheumatologist by saying that he would treat my symptoms, not my labs. So he sent me to a corneal specialist, as I was having deteriorating night vision. I have had two eye surgeries, which somewhat helped with my night vision. Found out that I had developed Salzmann's Nodules on both eyes, causing the vision problems. They are worsened by dry eye, which I have a moderate case of and possibly due to Sjogren's.
I was on PPIs for the past three years. A month ago, my symptoms disappeared as suddenly as they appeared. I quit taking the PPIs cold turkey, with no issue. So now the "only" apparent symptom I have is the ongoing dry eye. I never went on the Plaquenil. I do still have elevated anticardiolipin markers, but still no clots. Thank goodness. Anyway, thanks again to everyone who supported me with your suggestions during my ongoing "journey". Your assistance has been greatly appreciated. I hope you are all doing well these days.