Question:
The doctor has prescribed plaquenil for me. Does anyone take this drug and have you had any harmful side effects. I do not have Rheumatoid Arthritis. I have discoid lupus and lupus pneumotitis, rashes and painful joints. He is hoping it will help with he rash and the pains and stiffness. If someone could tell me more about it , it would be appreciated. I am having further studies of my lung, they definately ruled out a bacteria infection, the x-ray is unchanged from 3 weeks ago. I go to a lung specialist to give the final say.. as to do a biopsy, or treat with steroids, which would be a massive dose, the rhuemy said. Now to wait patiently to go the the lung doctor.. I am truly tired of going to doctors.. but I guess it is wise to be careful in a case like this. Thank You for any information on any of this,, especially the plaquenil. God Bless, Linda
Response:
Lady, I have not started it yet. The doctor was going to start me on it today, but backed off. I am going to a pulmonary specialist next week for him to decide whether he wants a biopsy done on my lung. So everything is on hold till then. So it helps prevent flares.. that sounds interesting. Thanks for the information. God Bless, Linda LadyKrysti wrote in message
<19990309190730.10567.00000…@ng-ch1.aol.com>… – Hide quoted text — Show quoted text ->How long have you been on it? Plaquenil often takes a while (up to 6 wks I’ve >heard) to start working. I was one of the lucky ones… It kicked in within 2 >weeks. I’ve been on it for 3 years with absolutely NO side effects. (yes, you >read that right). It helped prevent flares but, for me, when the flares DID >occur it didn’t help them much then. Good luck and keep us posted. >Krystie Rose
Response:
Plaquanil can take 6 weeks or even longer to start working. I’ve been taking it for 2 years, and we’ve never been really sure how much it helps. The effect isn’t always that obvious, but the name of the game is to keep the prednisone as low as possible, and if there is a chance the plaquanil is helping, we stay with it. You have to have eye exams regularly (every 6 months) when you take plaquanil because it has a rare side effect of damaging the retina. This is reversible when you stop the drug, I believe. I had a weird side effect early on – really bad incontinent diarrhea about 2 hours after I took the pills (in the a.m., so this would hit me at work!). Someone suggested I might be allergic to binders in the generic, and I switched to the brand name, and switched to taking the stuff at night. One or the other worked,and the problems went away. I’m now back on generic with no problems. Sandy
Response:
How long have you been on it? Plaquenil often takes a while (up to 6 wks I’ve heard) to start working. I was one of the lucky ones… It kicked in within 2 weeks. I’ve been on it for 3 years with absolutely NO side effects. (yes, you read that right). It helped prevent flares but, for me, when the flares DID occur it didn’t help them much then. Good luck and keep us posted. Krystie Rose
Response:
Hi I was diagnosed with "connective tissue disorder", probably lupus, about 6 years ago and started taking plaquenil then. It took about 4 weeks to kick in for me, and I have never had any adverse reactions and my eyes have been check and look good. Plaquenil made my "bad days" better. My level of health seems more constant, without the swings of really good days and then days when you can’t even get out of bed. Kathy
Response:
Hi , Plaquenil can take from 3- 6 mths for the FULL effect. Plaquenil has to reach a certain blood level and that is why it is possible not to see results early on!! Eye exams are to be done from 3-6 mths too. When just starting I think it is wise to go every 3 mths until this blood level is reached. I think later on they up it to 6 mths. I had an allergic reaction to it at 3 mths!! It was helping with joint swelling and stiffness. I broke out in rash and facial swelling. Good luck hope your tests come out ok and that you reach your desired results with plaquenil. Keep us posted , soc…@aol.com
Response:
I started on 400 mg of plaquenil daily 3 years ago. It helped a great deal with joint pain, but did nothing for the fevers and fatigue. I had no harmful side effects and a great deal of relief from the joint pain. I hope it helps you. Patti – Hide quoted text — Show quoted text -Linda wrote in message <7c45o1$gb…@remarQ.com>… >The doctor has prescribed plaquenil for me. Does anyone take this drug and >have you had any harmful side effects. I do not have Rheumatoid Arthritis. >I have discoid lupus and lupus pneumotitis, rashes and painful joints. He >is hoping it will help with he rash and the pains and stiffness. If someone >could tell me more about it , it would be appreciated. I am having further >studies of my lung, they definately ruled out a bacteria infection, the >x-ray is unchanged from 3 weeks ago. I go to a lung specialist to give the >final say.. as to do a biopsy, or treat with steroids, which would be a >massive dose, the rhuemy said. Now to wait patiently to go the the lung >doctor.. I am truly tired of going to doctors.. but I guess it is wise to be >careful in a case like this. >Thank You for any information on any of this,, especially the plaquenil. >God Bless, >Linda
Response:
Hi Jerry, I was diagnosed with SLE and Connective Tissue disease in 1994 and had been taking plaquenil until January 11th, 1999 when my eye test came out really strange. I could not see all the numbers in the colored chart for the visual acuity test. I was immediately taken of plaquenil and sent to take the visual field test. It came back abnormal. I seem to have lost my "central vision." I was sent to another specialist and did the test again. It too came out abnormal. I am now waiting for my opthamologist to get the second opinion thru snail mail, before he will tell me what is going on and whehter this can be reversed or what. It is possible that I am one of those people who happened to have this problem, but strangeley in my local San Jose lupus support group a male member who had also been on plaquenil for about five years ( and is on no other medication) had a eye test that was abnormal as well. Probably just a coincidence. Hope I have not scared you off, but as in all medications there is always a risk and you we just have to take the chance. shyla – Hide quoted text — Show quoted text -Jerry Malone wrote: > I started on 400 mg of plaquenil daily 3 years ago. It helped a great deal > with joint pain, but did nothing for the fevers and fatigue. I had no > harmful side effects and a great deal of relief from the joint pain. I hope > it helps you. Patti > Linda wrote in message <7c45o1$gb…@remarQ.com>… > >The doctor has prescribed plaquenil for me. Does anyone take this drug and > >have you had any harmful side effects. I do not have Rheumatoid Arthritis. > >I have discoid lupus and lupus pneumotitis, rashes and painful joints. He > >is hoping it will help with he rash and the pains and stiffness. If someone > >could tell me more about it , it would be appreciated. I am having further > >studies of my lung, they definately ruled out a bacteria infection, the > >x-ray is unchanged from 3 weeks ago. I go to a lung specialist to give the > >final say.. as to do a biopsy, or treat with steroids, which would be a > >massive dose, the rhuemy said. Now to wait patiently to go the the lung > >doctor.. I am truly tired of going to doctors.. but I guess it is wise to > be > >careful in a case like this. > >Thank You for any information on any of this,, especially the plaquenil. > >God Bless, > >Linda
Response:
Linda, My name is karen and i too have lupus. I have been taking plaquinel for 2 years and I think it is great. Before I went on it I had pleurisy. My lungs hurt so badly. My joints were also always swollen and sore. Since I have been on the plaquinel I have had minimal joint pain and my lungs have totally cleared. As far as I know Plaquinel is a pretty safe drug. I have no side effects from it. I take 400mgs a day. But every nine months I have to have my eyes checked by my opthomologist. It is rare but I heard the plaquinel can do something to the eyes and it is important to get your eyes checked every 6 months to a year. I hope I could help. karen
Response:
I was recently diagnosed with lupus and went on plaquenil and uterol for the joint pain and ended up with 10 days of severe diarhea and wondered if this was common and since i have stopped taking the plaquenil on dr advice the diahrea has stopped so what is next im very new to this and would appreciate any help scoo…@sprint.ca tina – Hide quoted text — Show quoted text -Kmrish wrote in message <19990322225113.05917.00000…@ng134.aol.com>… >Linda, >My name is karen and i too have lupus. I have been taking plaquinel for 2 years >and I think it is great. Before I went on it I had pleurisy. My lungs hurt so >badly. >My joints were also always swollen and sore. Since I have been on the plaquinel >I have had minimal joint pain and my lungs have totally cleared. >As far as I know Plaquinel is a pretty safe drug. I have no side effects from >it. I take 400mgs a day. >But every nine months I have to have my eyes checked by my opthomologist. >It is rare but I heard the plaquinel can do something to the eyes and it is >important to get your eyes checked every 6 months to a year. >I hope I could help. karen
Response:
I also have Lupus. I am 22 years old. I have Arthritis, too. I am taking plaquenil and pepcis 2x a day with Daypro. In the beginning, I got diareaha , too. Plus other side effects. Dont go off of the meds. They work, but for a few weeks or months, you will have those side effects because it is just starting to go in your body. Be patient. Are you taking pepcid with it? And are you eating before you take your meds? Those two things are important!. Stay on the meds!
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