View Full Version : Plaquenil...
09-25-2010, 02:47 PM
Iam starting this tomorrow and Iam scared to take it. Iam for sure going to give it a shot but have read things that worry me about it. Is it really that bad?
Linda From Australia
09-25-2010, 03:17 PM
I have been on Plaquenil since June this year. I was really nauseous but then my doctor told me to take it at night time and it is so much better. People have said that it take months for it to start to work. I am only starting to see some improvement in my Lupus now (3 months later). I am hoping in another few months I should be in total remission. The best advice I can give you is:
Take your medication at night time
Don't miss a dose
If you have any problems speak to your doctor
See an eye doctor soon for a baseline then make yearly appointments
DON'T go off yuor medication without discussing it with your docotor first!
09-25-2010, 04:31 PM
Thanks for writing, Do you take all of yours at once? Iam going to be taking 200mg I dont think I remember the doc saying to space it out or take together
Linda From Australia
09-25-2010, 04:38 PM
I am only on 200mg. If you are not sure phone your doctor.
Hi there. I have been on plaq. since Jan. It took about 4 to 5 months for me to see any difference (I am on 400 mg a day. 200 in the morning and 200 at night) but it has helped a lot! The only real problem with it could be damage to your eyes but that usually only happens on larger doses like what is used for malaria. You do need to have a plaqenil eye test when you start and have one each year after to make sure nothing is happening. As I said, there usually are not any problems on the 200 and 400 mg doses but it is best to be safe.
I have heard of people having upset stomach's at first but I didn't have any trouble. If you are only taking it once a day go ahead and take it at night or, if in the morning, take it with food. That should solve the problem. Remember to take it every day and don't look for a quick fix. I remember thinking that it was doing nothing and almost stopped it until I was told it would be about 5 months until results would show.
Good luck to you and try not to worry. Plaq. is one of the few meds I have been on that didn't give me any bad side effects
09-26-2010, 10:47 AM
I was hoping I could take the two pills together at night but was told one in the morning, one at night. Iam hoping I will not have any side effects either and hopefully I will not. It has been a year since I had an eye exam so guess I need to have one. My doc told me that more small people have problems with their eyes on this med, dont know if thats true or not.
09-26-2010, 11:39 AM
I can't take this med because it made me so nausous I couldn't eat or even smell food and I lost too much weight to the point I was a walking skeleton, and I am already skin and bones so it wasn't worth it for me to wait for months for it to work, and end up in the hospital because I'm starving to death. However, this is ONLY what happened for me, it does not mean it happens to everybody else and will be that bad. I take a different anti malarial drug as well as Prednisone and those two work very well for me.
No idea about the small people eye thing, but I do know that getting a problem with your eyes from this drug is very rare, but you should be checked anyway.
10-02-2010, 01:07 PM
I've been on it for nearly a month and have - 200mg, twice a day. I don't really seem to have any side effects. I will be getting my eyes checked next week as I do seem to be having more vision issues but I always have had eye problems. I was so scared at first to take it but I seem to be having one Lupus issue after another so I am definitely taking this very seriously and taking my medicine. All of this is really scary so I totally understand where you're coming from. In this situation, trust your doctor and let go and let God. This isn't something we can fix on our own.
10-02-2010, 01:50 PM
I've been on Plaquenil for 18 months now. At first, it made me quite nauseous and gave me the trots, but my body got used to it. I only take 200 mg per day - in the morning with breakfast. One thing for sure though - constipation is a thing of the past!
10-07-2010, 05:19 AM
I've been on Plaquenil - 200mg for over 5 yrs - need to get my eyes checked every 6 mths. So far so good.
I guess it helped with achy joints, but not much when I am having a "flare".
Lucky thing, I've not experienced any of the adverse side-effects from day 1.
Good luck Shanna!!
10-17-2010, 04:07 PM
Well reading what everyone says about plaquenil and also Marla and Rob come Tuesday i realy do hope they start me on this medication and it goes ok with my other meds, if not i'm refusing anything else being steroid based.
slim here i have been on plaquenil for the last five years and it has worked . The last two years has been difficult especially this year which has been rough. I am currently on plaquenil 400mg per day, cellcept 2000mg per day, prednisone 10mg per day, vitamin D 50,000mg every week for the next 3 months then 2000mg per day for life since i dont tolerate the sun n u need that for vit.d or a lot of milk(lol)(i live in sunny florida) restoril for insomnia (new) use to take ambien until it had me talking ,walking to my husband and children one small problem i had no recollection of said event , fish oil, now just added lyrica 50mg three times per day to control the pain by the way i am currently have a flare thats not going away had to have 1000mg of solumedrol iv for 3 days which sucked ot say the least. I hit the 5 yr. n my body decided to go beserk. my rheumy says there is a new drug coming out either in december or earlly next year which is suppose to be promising for lupus pt. cant remember the name my brain is pretty fried . im tired in pain n almost at the end of my rope which isnt like me. I dont really blog because when im sick i tend to shut down n dont communicate at all. Your entry called out to me n i hope you get better , find the right combo of meds and find a good doctor. so with that i say feel better stay strong and ill keep you and all lupies in my prayers. Oh if u have someone who is always there for u no matter what n keeps ur hopes up when ur at ur end u can dedicate the song ( u pulled me through by jennifer hudson) to show ur appreciation for the times ur not at ur best. my rock is my hubby. slim,
10-18-2010, 06:56 AM
slim here i have been on plaquenil for the last five years and it has worked . The last two years has been difficult especially this year which has been rough. I am currently on plaquenil 400mg per day, cellcept 2000mg per day, prednisone 10mg per day, vitamin D 50,000mg every week for the next 3 months then 2000mg per day for life since i dont tolerate the sun n u need that for vit.d or a lot of milk(lol)(i live in sunny florida) restoril for insomnia (new) use to take ambien until it had me talking ,walking to my husband and children one small problem i had no recollection of said event , fish oil, now just added lyrica 50mg three times per day to control the pain by the way i am currently have a flare thats not going away had to have 1000mg of solumedrol iv for 3 days which sucked ot say the least. I hit the 5 yr. n my body decided to go beserk. my rheumy says there is a new drug coming out either in december or earlly next year which is suppose to be promising for lupus pt. cant remember the name my brain is pretty fried . im tired in pain n almost at the end of my rope which isnt like me. I dont really blog because when im sick i tend to shut down n dont communicate at all. Your entry called out to me n i hope you get better , find the right combo of meds and find a good doctor. so with that i say feel better stay strong and ill keep you and all lupies in my prayers. Oh if u have someone who is always there for u no matter what n keeps ur hopes up when ur at ur end u can dedicate the song ( u pulled me through by jennifer hudson) to show ur appreciation for the times ur not at ur best. my rock is my hubby. slim, Hi Slim, What a cocktail of drugs mate, no wonder your any how, mind you i'm on quite a large amount for my epilepsey, they've got me on 75mg of Asprin to stop any clots from coming back and now to top it 4000mg of paracetamol and i am totally gone most of the time and the amount of times i have to check my spelling before i admitt an answer is pure madness.
My skin specialist wanted me to go on prednisone as he said it's a strong drug, i told him straight you'd better check with my other meds first to see if it will work ok, he checked and said you can't have it, it will counter react with your tegretol and cause you to fit more and when he mentioned it was a steroid i told him straight you can forget that one, so now i'm seeing a Rheumotolgy specialist who he works with but they've called me in sooner as my kidneys are swelling on my sides and it hurts if my hubby touches my side and apparentley that's to do with the Antiphospholipid syndrome, my god these conditions take some spelling on there own. Well like yourself i have my hubby to talk to i just miss talking to someone else sometimes as i feel like a parot but the sites good for me knowing there's people like yourself and other's who understand. When i go to the hospital tomorrow i'm realy hoping to get my other 11 blood results as he's tested me for more things.
You takecare of yourself mate and it's lovely for you to get intouch.
Hugs and love Terri xxx
10-19-2010, 07:29 PM
I'm about to start this too. I was scared about nausea because MTX has been making me so nauseous lately, but this thread has been helpful. THANK YOU!
10-21-2010, 06:20 PM
All the very best mate when you start the plaquenil and i hope the side affects don't hit you to bad and glad the thread as helped.
10-22-2010, 10:49 AM
I just take it with food. No problem, also I haven't had any bouts of bronchitis (of which I've had plenty in the past) Good things do come with plaquinil.
11-28-2010, 05:40 PM
I've been taking 400 mg for years. It's helped me really well , except for during flares when I need to get some steroid boosts. I remember it took me a really long time before I noticed how much better I felt. The only negative side effect I experienced was some serious itchiness that eased with an antihistamine. It started a week or so after I started taking it and went away after a few days.
My opthamologist once told me that he's only had to take one patient off plaquenil in the many years he's been checking eyes for that side effect alone. He still sees me regularly anyways. :-)
12-02-2010, 07:20 AM
I have been on it for several months, made me a little sick at first but now no problems. I am on 400 mg per day and I take it all in the morning.
12-02-2010, 01:44 PM
All i can say to you all, some member's are ok with it and other's are having side affects. Come january when i see my specialist i just hope i'm put on it to give it a try because there's not a day go by now where i don't get fedup with aches and pains and it would mean alot to me just to ease something when it eventually works.
03-10-2011, 08:37 PM
I just starting on plaquinel last week and I've been feeling a little sick but taking it with food does help. I also have been having dizzy spells but food also helps a little with those. I take 400mg a day one in the afternoon and one at night. Obviously I don't see any sign of it helping yet and I always find it funny that your body automatically (well in my case) starts having the side effects of the drug but it takes awhile for it to start making you feel better. I guess it just needs time to adjust to everything your shoving into yourself. My doctor didn't tell me I needed to see an eye doc while taking this so I'm going to have to ask him about that next month when I go back in. Anyways I hope the sides effects of this drug are few and far between for you!
03-11-2011, 04:22 AM
Toradoradi, i am just like that with medication. I will have every side effect if i read the printout with my meds,LOL..as a matter of fact, unless it is a time release i have been known to cut my meds into little pieces to try them out. My daughter[the Nurse] found out i was doing this with the Plaquenil that i just recently started and let me have it just yesterday.. "Mom" she said,rolling her eyes like her nine year old sister does," Everything you put in your mouth can have some sort of side effect. Quit screwing with your medication and take it like an adult.
If i hadn't been in so much pain from not taking my medication like the doctor ordered i would have smacked her. Hugs to all of you.
03-11-2011, 05:08 AM
it is steve here, from australia. ive been on 400mg of plaquenil for just over a year. i take it with food in the morning. i slowely built up a problem with it making me feel sick. i now also take 10mg of maxolon last thing at night. no more upset stomach. the benifits are definetely worth it. it has stabalised my lupus, not all my other problems though. stabalised not cured :(
03-11-2011, 12:14 PM
She's right - you're not supposed to cut some meds. However, I think that it's OK with Plaquinel. When I first started on it, my doc started me on 1/2 pill per day and then had me to work up to 1 per day. When I went up to 1 1/2, I had bad diarrhea, so we went back to 1 for a while.
Unfortunately, I moved then. My current rheumy has no interest in changing the dose, so I'm stuck with 1 pill per day until I move back to Texas and see my good rheumy.
just reading your entry and im sorry to hear your kidneys are acting up. This disease is unbelievable at times makes you wonder how much abuse one body can take. Here is something funny toatally forgot about taking the 2000u of vitamin d until i read your response , so thank you for the reminder. I read your entries and you are what I call strong. By the way are you going to try the new medication? I was so excited for this new medication and now im a little discouraged after reading the reviews and side effects but I am happy that at least some of us lupus patients will get some relief. I just got out of the hospital on Monday after another flare or a continuos flare who knows, Im just glad im out im still in pain but not as bad as before. I saw my rheumy on wednesday and he said we can try the Benlsyta, go off the methotrexae injection and cellcept and go on IV cytoxan, or do the new clinical trial for a new lupus med .Which I would have to commit to for a year. I dont know what to do, What is your thought on this? Enough about me feel better and let me know how your hospital visit went. Pain free hugs.Slim
I've taken plaquenil for a couple of years. 200 mg in the morning 200 mg in the evening. I find it very helpful.
I take 400mg at night and have done for abt past 9-10 months. no dramas with it yet but think it took a while to work, I was on steroids at the same time as starting so not sure when it started to kick in. Best of luck to u and hope it works!! Take care xo