Hi, I don't have a firm lupus diagnosis, but I have some kind of autoimmune process going on and it mostly effects my central nervous system. My rheumatologist prescribed plaquenil for me.
Does anyone here take it? What have you found are the side effects? I heard it can make your hair fall out and bother your stomach. I also read that you have to be careful of your eyes.
Thanks for any information you have to share about this drug. I also heard it could perform near miracles with some people.
I'm so tired of feeling drunk headed, weak-legged or having numbness in my hands and feet. On a good day, I am almost perfect, but most days I have some symptom or another bothering me. It's hard to work like that.
So, i'm willing to try the plaquenil. It's either that or the dexamethasone.
Hi, I am sorry you are going thru your symptoms...My younger sister has lupus sle...And while she was "in a flare" was hospitalized and they gave her plaquenil....I do know that she had an upset stomach from the plaquenil..But it takes a little time for your body to build up to it. Everyone is different though and it may not have the same effect on you than it had on my sis. Rather than the plaquenil, she is on predisone which she can tolerate..But again, because each diagnosis is different each medication assist differently. I wish you the best, in healing and in thoughts.
I take plaquenil. I've been taking it for about a month now and haven't noticed any side effects.
I have sjogrens syndrome. The plaquenil is supposed to help the fatigue and some of the aches and pains but i've been warned that it could take up to 3 months to work - so if your on it - its not a quick fix.
Plaquenil can take 3 to 6 months to kick in ,its not a med that works overnight.
Of course there are side affects like most meds ! But if they do get too bad indeed discuss them with your Dr.
Regarding drinking with them you shouldnt go over the top as with any meds and drinking.
I have taken plaquinil twice a day since the mid-80's. It actually helped my hair from falling out. Down side is it can cause retinopathy, so I see an eye doctor twice a year for a thorough exam. It definately helps reduce my flares.
(this is my first post here, hello all!) i've been taking plaquenil since february (2005). So far, it's been amazing! A little history:
around age 20 I started to feel not as spry. I was in marching band in college and started having joint pain, fatigue, general malaise, got pneumonia, was diagnosed with asthma, carpal tunnel syndrome, tendonitis, etc. They gave me prednisone and I absolutely couldn't handle it. I gained 25 pounds in a week. I had dreadful stomach pains, headaches, swelling, mood swings, couldn't focus, and lost depth perception. I spent two years after that uninsured.
When I finally became insured again, I went straight to the doctor with a list of complaints. It hadn't occurred to me how ridiculously long a list it was for a 24 year old. So, she ordered a metric ton of blood tests. Elevated ana got me a referral to the rheumy.
The rheumatologist diagnosed me with fibromyalgia and sent me for even more blood work. I have a strong family history of autoimmune issues, so she figured it would be safe. Her diagnosis was "arthritis" but she didn't specify a type. My bloodwork was borderline in most areas, but my ana had gone up in the two weeks between tests. She prescribed me plaquenil for the "arthritis" and sent me on my way. When the follow up appointment hit, I told her how much better I was feeling! Less pain, more energy, and miraculously, I haven't had any oral ulcers. Unfortunately, it took two months to kick in and if I miss even one pill, I get a two week setback. I get ridiculous oral ulcer outbreaks, pain, fatigue, and so on until my body balances back out again with the medications. It's unreal. When I mentioned this to her I got a, "hmm... That's interesting." she prescribed me 5 refills and told me to let her know if anything changes.
Later that month, my insurance carrier refused to cover the plaquenil. We needed an official diagnosis. Both my doc and I were happy to call it "arthritis" and let it be as long as the medication was working. So, the doctor reviewed my charts and symptoms and officially diagnosed me with systemic lupus. Joy. Anyway, I don't care what it's called as long as I can stay on the plaquenil.
My side effects lasted for the initial two months. If I miss a dose, they can act up for the first week or so (the same period of time my body takes to readjust). I take them with food (as directed). It's not just a "glass of milk" prescription, but it isn't as bad as the prednisone was. I eat toast for breakfast with my pill and have the second dose with dinner. I had diarrhea for awhile after starting (but it was easily controlled with immodium), gas, and a few extra blemishes. After a month it went away completely and I stopped having any side effects. A month after that, the symptoms of my illness subsided. It's so much better than the prednisone alternative.
I told the doctor that she could prescribe prednisone all day, but I wouldn't take it. She said, "that's odd... Most people with these illnesses generally respond well to prednisone." so, I simply informed her that it was hard for me to tell. The medication made me so miserable that I wouldn't have been able to say whether it helped with the inflamation, breathing, etc.
I have used plaquinil for about 3 years. I started using it because I had a flare up of vasculitis. It helped my vasculitis and also my arthritis.
I get my eyes checked every 6mo by an opthamalogist and have blood work done once a year. My last blood test indicated a below normal white blood cell count - so I have to stay off the plaquinil for 3 months and repeat the cbc to see if the plaquinil is responsible.
My stomach has never bothered me nor have I had hair loss. I had immediate results from plaquinil and certainly felt better by taking this medication.
I had never heard of plaquenil causing hair to fall out. My rhuemetologist said it can take 6 months to a year to see the benifits of plaquenil. But when 3 months into the meds I was not doing well she began talking of stronger medication. I have thining bones and prednisone is something we had hoped to avoid. Instead I am on 5-10mg a day depending on how I am feeling. I may very well need to go for the stronger meds but I keep hoping that given enough time the plaquenil will control things. I started it late in april so it might take a little while longer to kick in. I was on plaquenil for 3 years and did very well, but my blood work came back normal once and the rhuemy I was seeing said it meant there was nothing wrong with me and pulled all my meds. That was a little over a year ago. Thanks to that I had to go through the whole diagnosis process again. Worse I experienced the worst flare of my life and nearly ended up in the hospital. The first time I was on plaquenil I was one of the near miracle cases- my symptoms were so well controled I got my b.A. With honors in less than 4 years. Now I am barely functioning.
I have a grade 4 systolic heart mumur caused from my lupus, and I was put on plaquenil. I found that my heart beat a lot faster while I was on this drug. It took a while to see some results, but within two months my skin had started to clear up and I hadn't had any joint problems. I found that it made my stomach a little uneasy though, and I lost weight. After being off of plaquenil for two months, I had a flare and wasn't able to walk because of the swelling in my joints. I've been off the drug for a year now, and I really want to get back on it. My blood came back almost completely normal after 3 months of being on the drug. A year and a half ago, I had my tongue pierced and the head rheumatologist in my team called me a liar, and completely disregarded my lupus. She said the only reason I was unhealthy was because I was too inactive. It was really a kick in the groin for me because plaquenil made my life so much better. I didn't even know I could feel so good. Now that i'm off it, it's really depressing.
Yes I have been on plaquenil for almost 2 years. It does wonders for aches and pains HOWEVER, entire mood stability started to diminish to the point that I had to go to therapy only to be diagnosed with Bipolar disorder. I learned later that this drug has the potential to enduce mental disorders. Hey I like the drug for the pain...but what its done to my life mentally for my family and I..is a different story, I'll take tylenol arthritis sooner than taking plaquenil again!
I was diagnosed with lupus about 3 weeks ago, and have been taking plaquenil for the past 3 weeks. at first it made my stomach really hurt, but taking it after eating took care of that.
however I now seem to be having a reaction to the medication in the form of an extremely itchy rash that started on my back and has spread all over my body. it is especially bad on my head and face. the on call dr just told me to stop taking it and take some benedryl, but I am so miserable it is not funny.
not sure what is going to happen now.
has anybody else had this happen ?
Hi -- I've been on Plaquenil (400 mg daily) since 2001 for lupus (SLE) and Sjogrens. I, luckily, haven't had any side effects. Take it daily and remember that it will take months for it to kick in (I was told "around 3 months"). It is crucial that you see an eye doctor every 6 months when you are on the drug b/c it can cause retinopathy and only your eye doctor can diagnose that. Plaquenil has helped with my lupus symptoms but it has not helped with the sjogrens.
I have been on plaquenil since 1991 for RA and it works great for me. Unfortunately, I had to stop taking it for 6 months because I lost my job therefore, the insurance went with the job. Fortunately, I was able to get medical assistance and I am back on the drug and I can really see the difference without it. I also get my eyes examined once a year. In October I was diagnosed with Lupus and was told I had this for quite some time. The great thing was Lupus is treated with Plaquenil so I was being treated for the Lupus from the onset of the disease. Right now I am learning how to deal with these vibrations that I have going thru my body at any given time and my skin itching constantly.
I have been on plaquenil since 2006. It has helped so much. I have an auto immune desease that effects my connective tissue in my legs. I noticed that you mentioned your skin itching constantly. Mine is too. It started with hives off and on and itchy skin. Some days worse than others. Now my head itches all the time. I wasn't sure this was a side effect of plaquenil,so thank you for sharing. Have you figured out any thing that helps with the itching?
I was diagnosed with Undifferentiated Connective Tissue Disease in November and have only been taking Plaquenil for a few weeks. I have noticed that I get dizzy quite a bit and I usually wake up in the morning with a headache. I have also, on occasion, noticed my heart beating faster. For now these are the only real side effects that I have.
I appreciate everyone's posts. I was recently diagnosed with autoimmune disease and undifferentiated connective tissue disease. I have a lot of pain in my hands and arms, often have tingly hands (and sometimes feet), and am SO TIRED. The fatigue is the worst part. It is such a bummer.
My rheumy wants me to try plaquenil, but the eye risks are very scary to me. However, I think I'd be willing to try it if it helps fatigue. Anybody have good success with it treating your fatigue??
I have had the same diagnoses. Mine effects my legs. I had doubts and fears about the plaquenil side effects also. I had a Dr. ask me to please try it. I Decided to give it a try. It has made a big difference in my life. I have been on it for four years now. I started getting hives and itchy rashes that come and go and they do seem to be getting worse. It deffinatley helped with my fatigue. I get my eyes checked every 6 months. So far so good.
I have just started Plaquenil and am very hopeful after reading some of these comments. Diagnosed with Non-specific connective tissue disease. It started after i had my first of 3 knee replacements on the same knee. Wondered if there was any connection, but docs say no...?? Stress is my enemy, but you can't avoid that now can you? Anyway, I have rigid pain that won't let me bend or move unless I take prednisone. I actually feel like my bones will break. Family does not understand this invisible disease. Wish there was a support group around if just for some reassurance that I am not alone. Glad I found this website.
Hi! I was diagnosed with undifferentiated connnective tissue disease this summer(2012). I have been dealing with symptoms since I was in my teens. Everyone thought I was a hypochondriac, complaining all the time. Doctors seen me as a skinny healthy person. "oh your to young and you look healthy" and send me home. Well finally this year I got the doctors to do some digging, blood work. It came back with some significant findings. Well although we are heading some where...it isn't enough. I have arthritis head to toe, nerves are shot, skin is always a mess, hair loss, extreme fatigue, minus some body parts, involuntary muscle movements, muscle pain, bones feel like they are gonna break, chest and throat pain, ugh the list goes on. Just like you my family does not understand the invisable disease. I started plaquenil in June also a mobic for pain. I take pain meds only when needed. I August I got sick from food poisoning. I started out just with diarhea, then I got so bad I had difficulty breathing and had to get assistance to make it to the bathroom! Arms and legs were severly out of commission. Any way I was in the hospital 3 times in one week because the doctors couldn't comprehend my illness. Finally one doc put me on prednisone. Wahlah! By the end of the night I was able to move on my own and breath better. I guess plaquenil is helping me on a daily basis but when i got sick nothing helped more than prednisone. I still take it daily (its now October) but I hear long term its not good for you. I am 35 years old and have 4 children that rely on me, need me. I am wondering if any one has found a way to keep your organs from being damaged by this disease. I have a lot to do in life and need my body to keep up!
Try removing gluten from your diet. Gluten is the trigger in many autoimmune diseases and the "food poisoning" you mentioned should have caused your doctor to investigate the gluten intolerance possibility.
Hi i have been on plaquenil for months now to treat SLE and sjorgrens sydrome, It has only just really kicked in the past two weeks, my energy levels have improved quite a bit, the pains are reduced, so i think it is of benefit, i also take predionole 7.5 per day. I had some trouble with my eyes, but this is being looked into, they say it might be macular degeneration, but could also be affects of the druga, but have to wait for further tests.
I had doubts in the beggining but as time went on and my dose was increased to 400mg per day on plaquinel it is the best i have felt for nearly 3 years. Good luck.
I was diagnosed with Lupus about 5 months ago but have been suffering with the symptons for years. I take Plaquenil and Prednisolone together. I have no complaints about the medication as it seems to be helping with my condition. Apart from the usual side effects, the others stated are extremely rare. Remember that any kind of medication you take is new to the body and the body will take some time to get use to it. In this time you may experience some changes, but after a few months you will see the benefits. I dont know about anybody else, but SLE has totally messed up my life. I suffered terribly before i was given my diagnosis and put on the medication. Plaquenil has made me feel some what normal again and i can carry out my daily routines with little or sometimes no pain at all. Everybody is different and will react with medication differently. But i will say thta i think you should try the medication first and see how it goes. Dont let the stated side effects scare you because as i said before, they are extremely uncommon.
I am on a drug called cloraquin which is the same as plaquenil. I have been on it 5 years and decided to go off it because of retinopathy which I am scared of getting.
My doctors told me the eye doctor told her I had just a small amount of these little
crystals in the back of my eye. It has only been 2 months since I have been off it.
I am very lucky not to have the severe lupus mine is flare in my muscles around my bones and fatique little redness if in hot weather or cold. Sometimes I wonder if I
have fabromylgia. Also my white cells count was as low as it could go. So going off
this may change that. I guess you just have to try different things to suit your disease.
It is such a complex disease. Today I am very sore and tired. I took a celebrex it will help. Oh, I do take 5mg. of prednisone every day. Down from 20 mg. 5 years ago.
I will stay in touch and let you know what happens on this journey.
I have had an auto-immune disorder (high ANA) since about 2005. (runs in family - sister has Lupus, and other siblings have arthritis). I also have fibromyalgia of the arms and shoulders, and osteoarthritis in my hands, feet, and hips. I started the plaquenil about two months ago, b/c no docs in this area seem to want me to be on prednisone, which works like magic (even a small amount helps). Yes, at first I had the stomach aches, gas, and I do have quite a bit of hair loss, but that could be from the Lupus I read. Plaquenil definitely helps with my aches and pains. I would say that I noticed an increase in energy (slightly) and a reduction in some joint and muscle pain in the 2nd week. The tingling and numbness in hands and feet never seems to go away, unless perhaps I was to take the twice a day Lyrica, but that makes me too spacy and imbalanced; so I reserve that for a bad day or at bedtime.
In the meantime, I also must take Naproxen sodium (1) with 1/2 a Vicodin, about 3-4X per day on a busy day to make it through. I do work and am a full-time graduate student writing a dissertation proposal, so stress has been a definite factor: when the stress days, and physically challenging days are low, I do not require nearly as much pain management.
I noticed I was having trouble doing Yoga, after exercising several yrs. I thought it was strange. I was told to go see a Rheumetologist. I was diagnosed with Connective tissue disorder, something like that. I was prescribed Plaquenil. Went to an eye doctor, so far good. I've noticed I get dark really easy, when exposed to the sun. I can't open my jaw very wide, when eating, and every now and then I get this funny blur in my eye, looks like a water wave. I'm trying not to freak out. But I am concerned. How can I really know that Plaquenil is working, or making things worse
The water wave may be an ocular migraine. This used to happen to me all the time (before lupus and plaquenil). Doctors suggested I go over hormonal birth control, and from that day on I never had another ocular migraine. I'm not sure if it COULD be related to the medication or not, but I would try researching "ocular migraine"
The water wave may be an ocular migraine. This used to happen to me all the time (before lupus and plaquenil). Doctors suggested I go off of hormonal birth control, and from that day on I never had another ocular migraine. I'm not sure if it COULD be related to the medication or not, but I would try researching "ocular migraine"