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Old 08-09-2005, 03:22 PM   #1
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Plaquenil

Can anyone taking Plaquenil share their history and experience with starting the drug ? I just started taking it in June. I know it takes a while to "kick in" but approx. how long does it usually take and will it help with the fatigue as well as the achy joints and rashes? I haven't taken any prednisone for two weeks now (on and off it several times since March) and I'm hoping I'll see some results from the Plaquenil soon.

Any info would be great!

 
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Old 08-09-2005, 05:20 PM   #2
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Re: Plaquenil

hello, I've been taking Plaquenil for i'm guessing a mounth or so less than a year, and my perscription just got dubbled so i'm suddenly getting alot of the side affects (headaches, nuasia . . . ), but luckly my hair isn't falling out and i can still see as well as i could when i started, but anyways it has been helping me. I will admit that I haven't felt much diffent latly, but after some blood tests were done about a mounth ago my doc. said that i am starting to get better and that plaquenil has killing what it's suposed to and that it looks like I can get threw this, and hopfully, hopfully, before i start collage. Now it took several mounths for this to show that it was working for me because i had had many ore test results come back over this time with no change. Again, I had been on it for almost a year and nothing was diffent until around a mounth and a half ago, but that was just me. So I hope it does the same for you.

 
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Old 08-09-2005, 07:59 PM   #3
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Re: Plaquenil

Dear mhriley,

In some respects, I responded to the Plaquenil very quickly, but I'd laid off sun exposure at least 1-2 years before being diagnosed, as finally one of my drs. had thrown out a big hint about possible lupus.

Within several weeks, I lost the excruciating joint pain (was left with milder pain), back stiffness, and neuro-like tingling. Fatigue, hair loss, urinary & GI weirdness improved over several months. The anemia took longer, maybe 1/2 yr. or more for levels to normalize. I've never had a single show-stopper headache or a rash since starting the drug, either.

My previous rashes lasted as long as 2 months or more sometimes, before fading. Do you have any "new" rash?

I still flare every late spring/early summer, alas. Not as badly though, and with fewer symptoms---fatigue and joint pain being the most prominent. All in all, much more "do-able"...

I think people vary widely, though---no hard & fast rules apply. If you even feel better on ONE front now, that would be a good sign. But I hope you swing upwards quickly overall. Take good care, Vee

 
Old 08-09-2005, 08:40 PM   #4
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Re: Plaquenil

Hi -

Hope your doctor had you have your eyes checked before starting the Plaquinyl (as a baseline)and it's recommended that they be checked every 6 months while taking it. The older form of the medicine caused eye damage in the long term but only in those who didn't have their eyes checked. That damage was reversible when caught early, and most doctors still tell their Plaquinyl patients to see their eye doctors regularly just to be safe.

I felt gradually better in the first 6 weeks of taking the Plaquinyl and my lab values improved.

Wishing you well - Barbara

 
Old 08-10-2005, 07:48 PM   #5
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Re: Plaquenil

Vee,

I still have the same red rash on my legs. It went away when I was on the predisone, the first round, then it came back the same as before. Its worse than it was the last couple of years when it was just patches of red dots that would come and go. I also get rashy on my neck. That seems to be a bit better than it was the earlier part of this year. The really bad rash I got in March that was itchy and all over my body finally went away after several treatments of steriods. Fortuneately, that one has not come back. I think it was triggered by the parvovirus.

My Dr. has not officially called what I have Lupus because of insurance reasons but I have quite number of the "Big 11". I read the supplement to one of the sticky posts and I found a couple others to add to my list. From your experiece, is it worthwhile to metion to my Dr. my dry eyes (really dry for serveral years now) and also a really bad bout I had with insect bites I got last summer? We moved from California to Tennessee and I was nailed by the buggers real bad. I had to go to urgent care one evening and the Dr. there put me on antibotics. It was weeks before, probably months before I completely healed. Anyway, is any of this realvent? She already is aware of my migraines, tiredness, thyroid problem, joint swelling and burning, tiredness, rashes, fevers, tiredness, family history of autoimmune diseases (including Lupus & Diabetes), and oh, did I mention tiredness? I don't want to on and on to her about every little thing, especially if it really isn't necessary. I guess I hate hearing myself go on about every little thing!

Maureen

 
Old 08-15-2005, 04:34 PM   #6
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Re: Plaquenil

Hi, I am new, and I have severe lupus. I have a great doctor, and he put me on Plaquenil, and I have been on it now for over 2 years. I guess it works differently with everyone. I think it only took maybe 2-3 weeks for it to kick in, and I have never felt better. I have yet to have a flare up. I do get tired, but he has always told me not to over-do things, and stubborn as I am, I dont listen. So the tiredness hasnt gone away, and I am sure it wont, but it isnt as bad as it used to be. I wasnt diagnosed with Lupus til after I lost my 7th baby, and then they realized that I have lupus, and antiphospholipid syndrome, as well as anticardiolipid syndrome. And as you can imagine, being healthy all the way through high school, and most of my teenage and early adult life, I WAS SHOCKED!! But now that I have doctors that listen to me, and take what I tell them seriously, I am feeling so much better. Like some of you other ladies, I had anemia, which was quite severe as well, but I ended up with a bacterial infection in my heart and had open heart surgery, so I needed a blood transfusion, and havent had anemia since. But...because of the severity of my lupus, I have lost alot of my hair, my eyesight blurs and doubles (you know what I mean if it has happened to you), and I have brain damage caused by the seizures that I experience alot of the time. I am like alot of you in that I have migraine headaches, and an underactive thyroid. But like the one lady said, I also hate to hear myself go on...but I am sure this helps alot to talk to people who are experiencing the same things. People who dont have the same thing that we do, dont understand why we are so tired all the time, or why we need to stay out of the sun. It is really nice to talk to someone who doesnt think I am a hypchondriac...with all my problems. And the problems, I dont really view as problems...they are here to remind me to live each and every day to its fullest, and spend as much time with my one living son as I possibly can. That is why I feel blessed. It is my blessing in disguise. So ladies, perk up...every cloud has a silver lining, and lupus is my silver lining. Its better than not being here at all. Have a great day ladies, and I am saying ladies because I dont think it affects men. But if I am wrong and there is a man in this room, or on here, I am so sorry. Either way, have a wonderful day.

 
Old 08-15-2005, 04:37 PM   #7
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Re: Plaquenil

Hi, I am new, and I have severe lupus. I have a great doctor, and he put me on Plaquenil, and I have been on it now for over 2 years. I guess it works differently with everyone. I think it only took maybe 2-3 weeks for it to kick in, and I have never felt better. I have yet to have a flare up. I do get tired, but he has always told me not to over-do things, and stubborn as I am, I dont listen. So the tiredness hasnt gone away, and I am sure it wont, but it isnt as bad as it used to be. I wasnt diagnosed with Lupus til after I lost my 7th baby, and then they realized that I have lupus, and antiphospholipid syndrome, as well as anticardiolipid syndrome. And as you can imagine, being healthy all the way through high school, and most of my teenage and early adult life, I WAS SHOCKED!! But now that I have doctors that listen to me, and take what I tell them seriously, I am feeling so much better. Like some of you other ladies, I had anemia, which was quite severe as well, but I ended up with a bacterial infection in my heart and had open heart surgery, so I needed a blood transfusion, and havent had anemia since. But...because of the severity of my lupus, I have lost alot of my hair, my eyesight blurs and doubles (you know what I mean if it has happened to you), and I have brain damage caused by the seizures that I experience alot of the time. I am like alot of you in that I have migraine headaches, and an underactive thyroid. But like the one lady said, I also hate to hear myself go on...but I am sure this helps alot to talk to people who are experiencing the same things. People who dont have the same thing that we do, dont understand why we are so tired all the time, or why we need to stay out of the sun. It is really nice to talk to someone who doesnt think I am a hypchondriac...with all my problems. And the problems, I dont really view as problems...they are here to remind me to live each and every day to its fullest, and spend as much time with my one living son as I possibly can. That is why I feel blessed. It is my blessing in disguise. So ladies, perk up...every cloud has a silver lining, and lupus is my silver lining. Its better than not being here at all. Have a great day ladies, and I am saying ladies because I dont think it affects men. But if I am wrong and there is a man in this room, or on here, I am so sorry. Either way, have a wonderful day. [/QUOTE]

 
Old 08-15-2005, 07:41 PM   #8
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Re: Plaquenil

blessed4ever,

I'm glad the plaquenil worked so well for you. I'm keeping my fingers crossed and I'm trying to stay out of the sun as much as possible. I see my dr. this Friday and I'm anxious to see what the results from this visit turn out to be. There is quite a history of autoimmune diseases on my mother's side of the family so even though I wish that there wasn't anything at all wrong with me (I was also pretty healthy until the last ten years or so) I'm hoping my dr. can finally name exactly what's going on with me. My seven year old son went back to school today so I'm planning to go back to taking some naps during the day while he's gone. By the way, I should mention that he is our only son as well. My husband and I lost our first baby when I was 22 weeks pregnant due to premature labor. My ob/gyn ran lots of tests but found nothing wrong so we got the green light to try again. Luckily we got pregnant very quickly but again, around 23 weeks I started having contractions. My dr kept me in the hospital for a week and sent me home with a monitor and a terbutaline (sp?) pump. I made to 36 weeks then ripped the #$@! pump out. Next day, we had a beautiful baby boy. We wanted more but again drs. couldn't find anything wrong. We decided not to try again - the pain of losing our first son was just too much to take. Looks like maybe they should have tested for Lupus or something similar. Oh well, c'est la vie.

 
Old 08-15-2005, 10:24 PM   #9
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Re: Plaquenil

Hi...I have not officially been diagnosed with Lupus but I have been told I have an Unspecified Connective Tissue Disease and the Dr. does have me on Plaquenil 200 mg twice a day as well as Sulfasalazine 1500 mg twice a day. I have been on Plaquenil for approx. 1 1/2 yrs and Sulfasalazine for alittle less than that. At first it did take awhile for the Plaquenil to kick in (the Dr. told me it could take up to 6 wks to really get the full effect), but it did seem to help. However, it did not do enough so the Dr. put me on 500 mg of Sulfasalazine twice a day and has been progressively increasing the dosage because I still have more inflammation and pain than he or I want me to have. I do have to say, I have went from some days barely being able to walk or having severe pain in doing so, to being able to function with alot less pain on a daily basis. I too have had the tingling and pain in my hands and feet as well as pain in the legs, hips, shoulders and back. I have also had some dizzy spells (not sure if it is related).
I hope you feel better soon!

 
Old 08-16-2005, 12:34 PM   #10
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Re: Plaquenil

Well ladies, I am not quite sure how to work this thing yet, thats why there are 2 of my same messages in a row. Sorry about that. But I am feeling really good today, and I hope this message finds all of you feeling pretty good too. You know ladies, I was to the dentist again today, for the 4th time this year already. My family doctor told me that my teeth are becoming very weak from all the meds I am on. So he prescribed a calcium supplement (as if we dont take enough pills already) Anyhow, I dont care how sick I get, (call me superficial), I will not go through life missing teeth. But I just wanted to reply back to the ladies that were kind enough to reply to my message. And I hope this little message finds you all in the best health you can be in.
Until next time, take care..... Heather

 
Old 08-16-2005, 12:47 PM   #11
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Re: Plaquenil

tlsb2000.... For awhile I too was having dizzy spells, (vertigo I think they call it), and I thought it was bacause of my heart surgery. But since you have them as well, it might just be lupus related. Not sure. Before you get dizzy, do you feel sick to your stomach, or feel a feeling of "been there done that before"? I usually do, and then I get a funky nasty taste in my mouth, as well as a really nasty headache. And for whatever reason, I soon pass out and go into a seizure. Luckily, these are my warning signs, as well as my eyes going funny, if this has happened to you, you know what I mean when I say going funny. Kinda crossed and blurred at the same time. I go on the net and type in lupus, and I have learned alot about what it is and what it does. I use my yahoo search engine and type in Lupus, and it takes me right there. It explains the pain in your shoulders and legs and hips....it might help a little. Check it out, it helped me. Talk to you ladies again soon. It is great being able to talk to people with the same issues, and all of you ladies are so great.

 
Old 08-16-2005, 12:55 PM   #12
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Re: Plaquenil

mhriley...just a quick not to say good luck at your doctors appointment on friday. Keep your fingers crossed, and I will say a prayer for you...just in case you need that extra umph to get through your day. Just know that God has you, just like he has all of us, and remember He wont give you more than you can handle. Take care, and God bless.
Heather

 
Old 08-16-2005, 02:39 PM   #13
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Re: Plaquenil

Hi blessed4ever, thanks for the response...I have had the dizzy spells, I also get bad headaches, I do not pass out or have visual probs. I feel sick to my stomach on and off but I just kind of write that off, too many possibilities there... I have on and off had the feeling of Deja Vu but again I think that is unrelated... I have had fatigue and bruising as well. I do not recall a nasty taste except when I was on a specific medicine...
I would like to mention to all...yes it is great to have some place to bounce stuff off of other people who have an idea of what I am talking about. As I said I have not been diagnosed with Lupus just Unspecified Connective Tissue Disease. I was told that it seems to follow more along the lines of Lupus but it really cannot be specified at this time.
I hope all goes well at your Dr. appt. mhriley and hope everyone is having a good day!!!
Take care all......

 
Old 08-16-2005, 04:58 PM   #14
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Re: Plaquenil

I've been taking Plaquenil for about 4 years--a maximum dosage level for my weight. Before I started taking it, I was sleeping a lot--just horribly fatigued all the time. I'd had other acute symptoms, but the tiredness is somehow the worst. I'd come home from work and make dinner--then crash and burn.

I'm not sure exactly when the medicine "kicked in", but I do remember a realization that came about 2-3 months after I started taking it. I wasn't sleeping quite so much. Gradually, my energy level increased, and has been pretty good for the most part. I'm in a flare right now, have been for a few months, but I think we may have hit upon a treatment that is helping.

Others have said this, but you MUST have regular eye exams while taking Plaquenil. My rheumy says every 6 months, but I have to admit that I stretch it out sometimes to 8 or so months.

Kat

 
Old 08-16-2005, 07:17 PM   #15
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Re: Plaquenil

The eye exams are very important. I took plaquenil for about 2yrs and I felt it helped, but had a very bad 9mo flare in the middle of that 2yrs. Anyway had a regularly scheduled eye exam, flunked the visual field test, came out like someone with plaquenil toxicity. Stopped the plaquenil immediately and had a test which is akin to an ekg of your eyes. My eyes were fine and the plaquenil had nothing to do with the bad visual field test. Doc said maybe I just had a bad day that day or was extra tired, who knows cause my eyes were fine. I do remember having bouts of blurred vision during the time I was taking the plaquenil. Nothing major, just annoying.

Of course my rhuemy didn't put me back on plaquenil and when my pain and inflammation became so bad he put me on prednisone. I have to say though I would go back on the plaquenil again and give it another try if my doc would want me to do that. It is just that when the opthomologist said something is wrong and we need to get you the eye ekg and I would stop taking the plaquenil now, and YOU ONLY HAVE ONE SET OF EYES you tend to error on the side of caution.

Just passing along some personal experience for you to digest.

 
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