Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 I am on 200 mg x 2 daily. I do not have any side effects and I've been on it for about a year and a half. But please remember, the fact that I don't have them doesn't mean someone else won't. We're all individuals and medication may affect us differently. Hope someone else will give you a better idea. Welcome and please write whenever you feel like it. Mojo Robyn here, new member > Hi out there,I'm Robyn. I started having joint problems about 3 > years ago- just in my fingers. I'm 49 and have worked as a bartender > for almost 30 years. The pain in my fingers would be there after a > busy night at work. I just figured it was from gripping the bottles > all night long, probably age and maybe arthritis setting in. My > energy level sure had dropped in the last couple of years. As of the > first of this year I finally am covered by a decent health insurance > plan so I went to a rheumitologist beginning of March. He ordered > bloodwork done and then more bloodwork. Turns out I do have Lupus > and it was flaring pretty bad too- joint pain in fingers, wrists, > elbows, shoulders, extreme fatigue. I also have Cronic Hep C, so at > first the Dr thought that the Hep C was causing the problems. It's a > tricky situation treatmentwise and I'm waiting to see a hepitologist > in June. Meanwhile my rheumitologist put me on Plaquinel, 200 mg 2x > daily. It caused terrible intestinal cramps and the fun that goes > along with that, I was basically housebound. I'm wondering if > anyone has had those side effects form Plaquinel? I stopped taking > it until I can see discuss this with my Dr. There must be other meds > that I can take. I'm still have so much to learn. Thanks for > listening. Robyn > > > > > > " The LUPIES Store " Come check out our store... > http://www.cafepress.com/thelupies > > " The LUPIES Web Page " > http://www.itzarion.com/lupusgroup.html > > " The LUPIES online photo albums! " > Check out what your fellow Lupies look like... > http://www.picturetrail.com/lupies > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 In a message dated 5/12/04 12:24:08 PM Pacific Daylight Time, askam@... writes: << Meanwhile my rheumitologist put me on Plaquinel, 200 mg 2x > daily. It caused terrible intestinal cramps and >> Hi Robyn.....I was on plaquinil for a few years back in the late eighties and early nineties. I can remember getting nauseous. I had great results from the plaquinil as I did go into remission. Like a dummy I stopped taking it and guess what....lupus came back...I was put back on plaquinil again 2 years ago, and I was again nauseous in the beginning, my rheumy had me take both doses with my evening meal, and that helped big time. Three months ago my rhuenmy lowered my does to 200 mg once a day, so I have cut it in half and still (knock on wood) have been doing pretty good. Now the heat is ear, and I have a feeling I will be back on 22 mg twice a day. I wouldn't give up to easy on this drug, as it does wonders for lupus. Hope I helped. Also welcome to our little family. Everyone here is just the greatest as you will soon learn. Love & Friendship, Ellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Dear Robyn: Plaquenil has helped and I know because I got off it and I got my symptoms back. I don't have much going on with me, but it recently got pretty serious. I was diagnosed with kidney involvement right at the very beginning, many years ago (17). A year and a half ago my kidneys got so bad I was put on chemotherapy, cytoxan, and I just found out today I am finally done with chemo. It helped a lot, but there is permanent damage to my kidneys. Not as bad as we originally expected, so I'm pretty happy. Otherwise I have been on high, high steroid therapy (60mg for 3 months once, and 40 mg for 6 months just recently), imuran, lasix for the swelling. and high blood pressure medication. My other involvement is my head. I was diagnosed with multiple brain spots a few years back, and tests excluded a whole variety of problems leaving with the conclusion that either lupus affected my brain or these are signs of MS. It's not progressing, but I get really bad headached. Major bad. I take Elavil or amitryptyline (sp) for that as well as Imitrex. I also suffer from repeated pancreatitis, but this is not treated. I'm just being put on a diet and if I can't stand the pain I wind up in the ER being hooked up to an iv to hydrate me. The plaquenil is mainly give to me due to the fact that I get spasticity. My legs and hands spasm, the tendoms start pulling so it twists my limbs pretty bad and it's pretty painful. It still does it a lot, but not as intense as it used to when I wasn't taking plaquenil. Let me know if you have any other questions. Regards, Mojo Robyn here, new member > > > > > > > Hi out there,I'm Robyn. I started having joint problems about 3 > > > years ago- just in my fingers. I'm 49 and have worked as a > bartender > > > for almost 30 years. The pain in my fingers would be there > after a > > > busy night at work. I just figured it was from gripping the > bottles > > > all night long, probably age and maybe arthritis setting in. My > > > energy level sure had dropped in the last couple of years. As > of the > > > first of this year I finally am covered by a decent health > insurance > > > plan so I went to a rheumitologist beginning of March. He > ordered > > > bloodwork done and then more bloodwork. Turns out I do have > Lupus > > > and it was flaring pretty bad too- joint pain in fingers, > wrists, > > > elbows, shoulders, extreme fatigue. I also have Cronic Hep C, > so at > > > first the Dr thought that the Hep C was causing the problems. > It's a > > > tricky situation treatmentwise and I'm waiting to see a > hepitologist > > > in June. Meanwhile my rheumitologist put me on Plaquinel, 200 > mg 2x > > > daily. It caused terrible intestinal cramps and the fun that > goes > > > along with that, I was basically housebound. I'm wondering if > > > anyone has had those side effects form Plaquinel? I stopped > taking > > > it until I can see discuss this with my Dr. There must be > other meds > > > that I can take. I'm still have so much to learn. Thanks for > > > listening. Robyn > > > > > > > > > > > > > > > > > > " The LUPIES Store " Come check out our store... > > > http://www.cafepress.com/thelupies > > > > > > " The LUPIES Web Page " > > > http://www.itzarion.com/lupusgroup.html > > > > > > " The LUPIES online photo albums! " > > > Check out what your fellow Lupies look like... > > > http://www.picturetrail.com/lupies > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Dear Robyn: Plaquenil has helped and I know because I got off it and I got my symptoms back. I don't have much going on with me, but it recently got pretty serious. I was diagnosed with kidney involvement right at the very beginning, many years ago (17). A year and a half ago my kidneys got so bad I was put on chemotherapy, cytoxan, and I just found out today I am finally done with chemo. It helped a lot, but there is permanent damage to my kidneys. Not as bad as we originally expected, so I'm pretty happy. Otherwise I have been on high, high steroid therapy (60mg for 3 months once, and 40 mg for 6 months just recently), imuran, lasix for the swelling. and high blood pressure medication. My other involvement is my head. I was diagnosed with multiple brain spots a few years back, and tests excluded a whole variety of problems leaving with the conclusion that either lupus affected my brain or these are signs of MS. It's not progressing, but I get really bad headached. Major bad. I take Elavil or amitryptyline (sp) for that as well as Imitrex. I also suffer from repeated pancreatitis, but this is not treated. I'm just being put on a diet and if I can't stand the pain I wind up in the ER being hooked up to an iv to hydrate me. The plaquenil is mainly give to me due to the fact that I get spasticity. My legs and hands spasm, the tendoms start pulling so it twists my limbs pretty bad and it's pretty painful. It still does it a lot, but not as intense as it used to when I wasn't taking plaquenil. Let me know if you have any other questions. Regards, Mojo Robyn here, new member > > > > > > > Hi out there,I'm Robyn. I started having joint problems about 3 > > > years ago- just in my fingers. I'm 49 and have worked as a > bartender > > > for almost 30 years. The pain in my fingers would be there > after a > > > busy night at work. I just figured it was from gripping the > bottles > > > all night long, probably age and maybe arthritis setting in. My > > > energy level sure had dropped in the last couple of years. As > of the > > > first of this year I finally am covered by a decent health > insurance > > > plan so I went to a rheumitologist beginning of March. He > ordered > > > bloodwork done and then more bloodwork. Turns out I do have > Lupus > > > and it was flaring pretty bad too- joint pain in fingers, > wrists, > > > elbows, shoulders, extreme fatigue. I also have Cronic Hep C, > so at > > > first the Dr thought that the Hep C was causing the problems. > It's a > > > tricky situation treatmentwise and I'm waiting to see a > hepitologist > > > in June. Meanwhile my rheumitologist put me on Plaquinel, 200 > mg 2x > > > daily. It caused terrible intestinal cramps and the fun that > goes > > > along with that, I was basically housebound. I'm wondering if > > > anyone has had those side effects form Plaquinel? I stopped > taking > > > it until I can see discuss this with my Dr. There must be > other meds > > > that I can take. I'm still have so much to learn. Thanks for > > > listening. Robyn > > > > > > > > > > > > > > > > > > " The LUPIES Store " Come check out our store... > > > http://www.cafepress.com/thelupies > > > > > > " The LUPIES Web Page " > > > http://www.itzarion.com/lupusgroup.html > > > > > > " The LUPIES online photo albums! " > > > Check out what your fellow Lupies look like... > > > http://www.picturetrail.com/lupies > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Dear Robyn: Plaquenil has helped and I know because I got off it and I got my symptoms back. I don't have much going on with me, but it recently got pretty serious. I was diagnosed with kidney involvement right at the very beginning, many years ago (17). A year and a half ago my kidneys got so bad I was put on chemotherapy, cytoxan, and I just found out today I am finally done with chemo. It helped a lot, but there is permanent damage to my kidneys. Not as bad as we originally expected, so I'm pretty happy. Otherwise I have been on high, high steroid therapy (60mg for 3 months once, and 40 mg for 6 months just recently), imuran, lasix for the swelling. and high blood pressure medication. My other involvement is my head. I was diagnosed with multiple brain spots a few years back, and tests excluded a whole variety of problems leaving with the conclusion that either lupus affected my brain or these are signs of MS. It's not progressing, but I get really bad headached. Major bad. I take Elavil or amitryptyline (sp) for that as well as Imitrex. I also suffer from repeated pancreatitis, but this is not treated. I'm just being put on a diet and if I can't stand the pain I wind up in the ER being hooked up to an iv to hydrate me. The plaquenil is mainly give to me due to the fact that I get spasticity. My legs and hands spasm, the tendoms start pulling so it twists my limbs pretty bad and it's pretty painful. It still does it a lot, but not as intense as it used to when I wasn't taking plaquenil. Let me know if you have any other questions. Regards, Mojo Robyn here, new member > > > > > > > Hi out there,I'm Robyn. I started having joint problems about 3 > > > years ago- just in my fingers. I'm 49 and have worked as a > bartender > > > for almost 30 years. The pain in my fingers would be there > after a > > > busy night at work. I just figured it was from gripping the > bottles > > > all night long, probably age and maybe arthritis setting in. My > > > energy level sure had dropped in the last couple of years. As > of the > > > first of this year I finally am covered by a decent health > insurance > > > plan so I went to a rheumitologist beginning of March. He > ordered > > > bloodwork done and then more bloodwork. Turns out I do have > Lupus > > > and it was flaring pretty bad too- joint pain in fingers, > wrists, > > > elbows, shoulders, extreme fatigue. I also have Cronic Hep C, > so at > > > first the Dr thought that the Hep C was causing the problems. > It's a > > > tricky situation treatmentwise and I'm waiting to see a > hepitologist > > > in June. Meanwhile my rheumitologist put me on Plaquinel, 200 > mg 2x > > > daily. It caused terrible intestinal cramps and the fun that > goes > > > along with that, I was basically housebound. I'm wondering if > > > anyone has had those side effects form Plaquinel? I stopped > taking > > > it until I can see discuss this with my Dr. There must be > other meds > > > that I can take. I'm still have so much to learn. Thanks for > > > listening. Robyn > > > > > > > > > > > > > > > > > > " The LUPIES Store " Come check out our store... > > > http://www.cafepress.com/thelupies > > > > > > " The LUPIES Web Page " > > > http://www.itzarion.com/lupusgroup.html > > > > > > " The LUPIES online photo albums! " > > > Check out what your fellow Lupies look like... > > > http://www.picturetrail.com/lupies > > > Quote Link to comment Share on other sites More sharing options...
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