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jseda
02-11-2009, 08:38 AM
My Dr. jut gave me a script for plaquenil since my lab work is coming back positive again. Is anyone on Plaquenil now or was on plaquenil? any thoughts on it? thanks


~J~

iseedeadmonkeys
02-11-2009, 10:42 AM
Hey,

Im on plaquenil, have been for a year and half now, yeah ts not too bad, woked wonders when i first went on it, dont see much of the affect nowa days tho, make sure you get your EYES checked as it MAY cause damage to the retina.

kukukajoo
02-11-2009, 10:43 AM
I have been reading up on Plaquenil and plan to ask my MD about it since it is also used to treat APS.

I want to avoid steroids at all costs is all I know!

kukukajoo
02-11-2009, 10:45 AM
I have been reading up on Plaquenil and plan to ask my MD about it since it is also used to treat APS.

I want to avoid steroids at all costs is all I know!

iseedeadmonkeys
02-11-2009, 10:49 AM
kuku,

I also wanted to avoid steroids at all costs, but pain is too far gone now, so im giving everything a go :(

peace
x

cptnblah
02-11-2009, 02:02 PM
I am also on that med. There are some possible side effects but they pretty much went away for me. I look at the otherside...pain!!! It is much better than the steroids also. Just hang in there and try to trust your doc. Good luck!

jseda
02-11-2009, 02:57 PM
okay that makes me feel a little better. i just picked up the prescription so let's see how it works

~J~

jseda
02-11-2009, 02:59 PM
he also increased my prednisone to 20 mg form 5 mg, so i will be on the plaquenil and prednisone.

meds: prednisone, cozaar, toprolol, diltiazem, plaquenil

kducks
02-12-2009, 11:48 AM
When they first put me on plaquneil years ago, I had problems taking it. I broke out in rashes and stuff and they took me off of it. I went through a ton of medications and years later they decided to try the plaq again and let me tell you..it is my lifesaver. It allowed me to come off of prednisone and methotrexate and I can say I have been "medically controlled" for many years now thanks to this drug. I take one plaq a day still and it keeps me under control. I tried coming off of it a couple years ago, but my body said no way. Keep up on your eye exams though cause it's been known to cause problems with eye sight sometimes. One weird thing too, my doctor thinks that all my years of being on plaq has brought on asthma for me. I have a slight case but I'll take the payoff of living relatively pain free for years now.

jseda
02-12-2009, 12:39 PM
Thanks kducks!!!

~J~

sick n tired
02-12-2009, 12:53 PM
Hey jseda,

I also take plaquenil...one thing you might have already been told is it takes a while to start working...as little as 3 weeks and as much as 6 months...I was the 6 months person...so you might have to be patient because it is worth it. One day last summer I woke up feeling normal (well almost)
of course, it took a while to remember why. :)

jseda
02-12-2009, 01:13 PM
thank you sick n tired, no i didn't know that. thank you for telling me

sits_inthe_corner
02-17-2009, 06:57 PM
I've been on plaquenil for over a year. At first it upset my stomack and made me dizzy, and a few other ummm stomack issues.

My family doctor also takes plaquenil and suggested that I take both pills together just before bed with a small tub of yogart. (single serving) That way I could sleep through the worst of the side effects and feel good during the day.

Well for me that worked like a charm. After six months it kicked in and reduced my pain and swelling.

If you find you are having any problems with some of the side effects, high tail it in to your doctor and ask if it's okay for you to take both pills before bed.

Please do not just do this with out checking with your doctor, as I do not know what other medication you are on or other health issues.

Personally, I love plaquenil. I hope with proper monitoring I will be able to stay on it. It has given me back so much that I had lost.

JennM
02-19-2009, 07:10 AM
I have just started taking plaquenil recently beginning at the end of January. My Rheumie tells me that it will take 4 to 12 weeks to notice any difference. I take 200mg twice daily. She also put me on prednisone 5mg 3 times daily, because she said my WBC was too low. So far, I do feel better, don't know if it's the prednisone or plaquenil though. I too don't want to stay on the prednisone, this is the first time I have ever taken it. I have read all kinds of horror stories bout the side effects. I plan on getting my eyes tested this coming Monday for my baseline because of the plaquenil. I haven't hurt as bad since starting these meds and some days Ihaven't hurt at all, which is amazing considering I have been having pain now non stop for almost 2 years! Hang in there, I hope this plaquenil works for you and all of us that take it.

mountaindreamer
02-19-2009, 07:44 AM
hi jseda,

i started plaquenil in December...I understand that it takes about 5 months to really get in your system and for you to start feeling better.....I am looking forward to that.

Julie46
04-10-2009, 05:17 PM
I just started plaquinel today, I'm only taking 200 mg per day. 5 hours after taking my 1st pill I became very, very, dizzy and I'm also nauseated. I need and want to continue taking plaquenil but will I be able to drive and work?? How long and does the dizziness and nausea subside???? I recently lost weight from my Lupus, no appetite and I've been nauseated most of the time before trying the plaquenil. I'm 5'7" and weigh 115 lbs so when I saw my doctor I requested half the dose (200mg/day) he agreed. Will that be enough to help me with my Lupus or should I take 2 pills/day (400 mg)??? I need something, I have'nt had a good day in about a year.

Angel Oliver
04-10-2009, 05:18 PM
I just posted something for you on your post....go n read it! xxxx

abbasgirl
04-11-2009, 09:07 PM
I've been on Plaquenil for 6 months now and I haven't noticed anything yet, but then I haven't been officially diagnosed with anything yet. So it may not be the right treatment for me or may take longer.

tasha
04-12-2009, 08:43 PM
i've been on plaquenil for about 4 months now and i don't have any pain most of the time, but then i don't know if it's because of the plaquenil or because of the prednisone. i guess once i can decrease prednisone even more then i'll know if the plaquenil is actually working.

maguadalupe
04-12-2009, 10:15 PM
hello , i also take planquenil for about 3 yrs i feel go no pain like before. just keep up on your eye exam.


maria

Hazel
04-15-2009, 12:26 AM
I cut down my prednisone today to 15mg and have started on the plaquenil but am waitinfg for it to kick in. So far i dont think it has stared helping yet but i will just have to wait and see.

mountaindreamer
04-15-2009, 06:58 AM
hazel,

what dose of prednisone were you on before lowering to 15 mg?

when did you start plaquenil....takes up to 6 months for it to start working.

hope your day is good

Hazel
04-15-2009, 08:06 AM
I started on 37.5mg of prednisone (they wanted to go higher but my weight was so low they couldn't give me anymore) and have lowered it a little around every 2 weeks for 2 months. for the last two weeks i have been on 30mg. I am now down to 15mg and we will be holding it here for a while till the plaquenil kicks in. I have been on the plaquenil for 2 weeks now.

Because i am so new to all of this its really hard for me to tell what is actually working for me.

emilbear
04-15-2009, 02:55 PM
i've been on plaquenil for about 7 years now. i also started imuran at about the same time, a few months after starting plaquenil i think -- it was a long time ago :unsure: i've been on 200mg of plaquenil 2 times a day and 50mg of imuran (i couldn't tolerate a higher dose of imuran b/c of side effects, esp nausea). i had improvement by about 6 months after starting those meds and could see major improvement about a year or so after starting them.

some of my initial symptoms improved for a few years but then things started to go down a bit but with different problems than i had initially. it takes a lot of patience to wait it out but the meds can make a big difference! i also had a lot of problems with nausea, mostly from imuran. my doc gave me the same advice-- take the plaquenil and imuran at night with dinner (instead of with breakfast). i find that if i make sure i eat enough food (and usually bread or something to soak up all those chemicals) when i take the meds i don't feel very sick. the trick is eating enough food (easier said than done as many of you know!).

i hope the plaquenil works out well for you!

MicRoMediC
04-18-2009, 08:18 PM
I was put on Plaquenil almost two weeks ago now. They had me on 200mg for a week then up'd it to 400 last week. It has kind of messed with my digestive system, I have not had an appetite at all and have lost a few pounds. Also I have insomnia. I think my body's starting to get used to it because I got to eat today! YAY! Anyway, other than that it's been great. I have not had an outbreak or a pain since I've been on it. I know it takes a while to get in your system, so I'll let you know how it goes. I have done some research on it and the only major problem is again, with the eyes. But again, I'm happy with it so far.

mountaindreamer
04-19-2009, 11:06 AM
hi micromedic,

stomach issues are common when first starting plaquenil. when i first started, i quit taking because of the side effects. My dr. convinced me to keep trying, and these issues subsided after a short time.

sarahp
04-19-2009, 02:24 PM
Hi All, I have also been on plaquenil for a while now...just over 2 years. To be honest i am not sure if it helps me or not really but i dont want to come off it just in case i get worse:wacko:
I take 2 x 200mg both together in the morning. I have tried splitting the dose am and pm but i think that for me it works slightly better first thing in the morning:yes:
Lov Sarah xx

ritzbit
04-27-2009, 09:38 AM
I've been on Plaquenil for 2 months and its not doing anything for me. I was fine with it pretty much for about a month. Now Im having a lot of stomach issues. My mom told me it probably isn't the medicine since I've already been on it for a month or so but Im not sure. If its not that my doctor thinks my birth control and the Plaquenil might not be getting along? I dont really know. Anyone else had similar problems?

sugarfoot52
04-28-2009, 03:03 PM
From what I have read plaqunil was originally used to help control malaria. I've been on it for nearly 4 yrs. now. I may be wrong but I don't think it is meant to be a pain reliever, because my doctor is giving me diclofenic for that. I think it helps control the immune system from producing too many of the unfriendly white blood cells.

sugarfoot52
04-28-2009, 03:06 PM
I am having problems with my stomach also, but again, I'm probably wrong but I think mine is more from all the nsaids I have been taking.

MicRoMediC
04-28-2009, 04:11 PM
I'm on birth control, have been for almost 5 years now. I started Plaquenil almos 3 weeks ago now and have just now gotten over my stomach issues. I was so sick and couldn't really eat for over two weeks. Make sure you're eating a full meal or drinking a full glass of milk with the plaquenil when you take it, I also suggest not taking the two at the same time.

ritzbit
04-28-2009, 05:30 PM
My doctor told me to take them at the same time. She said some people but she wanted me to take them together with dinner. So I take everything at dinner so I dont forget. Why do you think I shouldnt take them at the same time?

MicRoMediC
04-28-2009, 05:33 PM
Just thought might help with the stomach problems...it's maybe something to try. I take my plaquenil in the AM and then my BC at dinner time.

ritzbit
04-28-2009, 05:40 PM
I feel like I would totally forget if I took anything in the morning. I am not a morning person lol I wake up late and rush every morning. Im lucky to remember them at dinner. which reminds me...lol I should probably go take them. I've been taking them for a few months and still forget half the time lol

wrightrs
04-28-2009, 05:53 PM
I feel like I would totally forget if I took anything in the morning. I am not a morning person lol I wake up late and rush every morning. Im lucky to remember them at dinner. which reminds me...lol I should probably go take them. I've been taking them for a few months and still forget half the time lol



I've never been a morning person either. But now that I have lupus I even eat breakfast now, didn't before. So now I eat breakfast and take my meds in the morning. But it Still feels strange.

ritzbit
04-28-2009, 05:59 PM
I wish I could manage to get up early enough eat some breakfast. I occasionly I have time to put watermelon in a bag before I have to rush out the door lol if I could I would try doing that but I cant manage to do that

mortifiedat52
05-01-2009, 01:26 PM
i just began taking plaquenil today and feel like a horse just kicked me in the gut!! i took it with a meal, but it didn't seem to help..

wrightrs
05-01-2009, 04:45 PM
I am having problems with my stomach also, but again, I'm probably wrong but I think mine is more from all the nsaids I have been taking.


nsaids cause stomach problems. Be sure take with food. I take protonix and that help with my stomach problem. Right now I'm taking mobic it's a nsaid that easy on you stomach. But I plan to go back to naproxen because mobic does not seem to help my joint pain.

ashleybaby715
05-03-2009, 04:10 PM
i take 200mg of plaquinel daily. i absolutely love it. like between this and the other meds im on, my blood work numbers have really improved since i started taking it. i've had no problems with it.
just remember that you need to see an opthamologist. i will be seeing one tice a year. i already had one visit- and i go back july 14th. plaquinel can mess with your eyes biggg time and cause different problems. but as long as you get your eyes checked, you'll be totally fine!

justomegirlindallas
06-25-2009, 08:42 PM
I've been on plaquenil for over a year. At first it upset my stomack and made me dizzy, and a few other ummm stomack issues.

My family doctor also takes plaquenil and suggested that I take both pills together just before bed with a small tub of yogart. (single serving) That way I could sleep through the worst of the side effects and feel good during the day.

Well for me that worked like a charm. After six months it kicked in and reduced my pain and swelling.

If you find you are having any problems with some of the side effects, high tail it in to your doctor and ask if it's okay for you to take both pills before bed.

Please do not just do this with out checking with your doctor, as I do not know what other medication you are on or other health issues.

Personally, I love plaquenil. I hope with proper monitoring I will be able to stay on it. It has given me back so much that I had lost.


Plaquenil has made a substantial improvement for me. Do you take all 400MG at night? or are you on a lower daily dose of plaquenil. My plaquenil bottle just says take one tablet twice a day. (400 mg total) for all I know thats one pill with the first yogurt and the other with the next yogurt :D

Terry73
07-01-2009, 08:04 PM
I was just recently put on plaquenil as well, i am also on Immuran, losec, migraine meds and insulin. I am trying to avoid going back on prednisone i have just been weaned off of 100mg dose of prednisone and everything is back. The plaquenil is making my stomache really upset and i feel wired and just unwell. Im trying to stick it out cause so many say this goes away......im hoping i don't want to go back on the prednisone

crmj1183
07-01-2009, 08:12 PM
I used to take plaquenil from 2001 til 2007, I ended gaining an allergic reaction to it so they took me off of it. When I was on it, it helped. Only thing with the plaquenil you'll need to get your eyes checked once a year (dilated) because it causes fluid behind the eye that can cause you to go blind but dont be alarmed that is like one in amillion and you ARE NOT IN THAT MILLION. Ask your doctor about what Im referring to just to be clear

crmj1183
07-01-2009, 08:16 PM
Terry ask our doctor if you can take some nexium or prevacid for the upset stomach,thats what I used o tkae when was on plaquenil. Hope u feel better :)

justomegirlindallas
07-01-2009, 08:18 PM
It takes a few months to kick in but works pretty good.


Plaquenil 400 MG, Prednisone 30 MG

AmyK
07-06-2009, 06:39 PM
I started taking it about 7 weeks ago...i do notice some difference but I don't know if it's that or my other med (Voltaren (sp?)) but I have gained weight and am not happy about that but it could also be that I am not working out that much anymore.

Overall though I am with you on the non steroids and think its been working!!

Jesse
07-08-2009, 04:10 PM
Here's something you might all find interesting. I also have Sjogren's Syndrome and just finished reading The Sjogren's Syndrome Handbook, Edited by Dr. Wallace, a well known expert in the field of SS and lupus. In that book it says that it can take one to two YEARS for Plaquenil to reach its full potential. So, those of you on it for less time than that (it's been over two years for me), you may find that it helps even more later on.

And for those of you who feel like it might not be helping any more, I sometimes feel that way too, but I learned, as others have, that it really, really is helping and you just don't realize how much until you try to stop it. I had tried to cut back from 400 mg. to 200 mg. daily because I thought the ringing in my ear was from the Plaq. even though the doctor disagreed. Oh boy, I found out really quickly not to try that again. We forget how it used to be before the meds and start thinking that they're really not doing much of anything. I see nothing wrong with trying to cut back on our meds (with the doctor's supervision) but more often than not, I think you'll find that the Plaq. is still helping. Having said all that, I wish for all of you that you can eventually kick all of those nasty meds! LOL

mountaindreamer
07-08-2009, 08:33 PM
hi jesse,

thanks for the information on plaquenil....i had not heard that it can take up to 2 years to reacy full potential. I do agree with us just not realizing how much the plaquenil is helping. My rheumy reduced mine from 400 mg to 200 mg per day when i started having success with methotrexate. However, i have noticed that i am not feeling as well, and am in more pain. I am going to call and ask to increase plaquenil back to 400mg.

hope you had a wonderful day today.

maguadalupe
07-10-2009, 03:50 AM
i am on planqueil for about 5 yrs and i like it works wonder i felt the diffrent when i started on it i take 2 tablet of 200 mg each tablet at time . i'm not in pain like i used to i avoid the predsione . you could try it and see how it work for your if it works make sure you check your vision once a year. any question e-mail

maria

Crabcakes
08-29-2009, 08:25 PM
I started generic Plaquenil (hydroxychloroquine sulfate) manufactured by Watson. I didn't expect much, as I knew it could take up to several months to fully work. By the second week, my pain was almost gone! I have had minor stomach discomfort, but WELL worth it, to be pain-free!

I did have a problem, when I had my Rx refilled, and got a different brand of generic hydroxychloroquine sulfate. Immediately my stomach discomfort was gone, but by the third day, a lot of my pain came back.

The pharmacist denied that there was a difference in generics, but I have read to the contrary! Also, I read that some generic manufacturers use not only different binders and fillers, but different particle sizes. These variations cause the medication to be absorbed differently, often causing the drug to work less efficiently. The pharmacist DID give me a third different generic, and it too is not working as well as my original prescription. I alays advocated generic drugs, but not for Plaquenil!

Crabcakes
08-29-2009, 08:27 PM
Read more here:

http://wickedantibodies.blogspot.com/

dulcepiragua
09-03-2009, 08:10 PM
My Dr. jut gave me a script for plaquenil since my lab work is coming back positive again. Is anyone on Plaquenil now or was on plaquenil? any thoughts on it? thanks


~J~

Hi,I'm tacking plaquenil since may 200 mg supose 2 take twice a day,but i just take 1 pill,help me with my pain big time,is much better than prednisone,thats what i think ,i used before many years ago,so everybody is diferent but dont be afraid have a journal whenever you start your med,and notice any change for good or bad,sometimes we dont have a choice,I take 7 dif,pills every day so,u know what we can do:yes:hope you feel better!!!