Comments on: Antimalarial Drugs May Help With Lupus http://femmenoir.net/2010/02/02/antimalarial-drugs-may-help-with-lupus/ Mon, 26 Jul 2010 18:45:29 +0000 hourly 1 http://wordpress.org/?v=3.0 By: Angela Odom http://femmenoir.net/2010/02/02/antimalarial-drugs-may-help-with-lupus/comment-page-1/#comment-1172 Angela Odom Thu, 11 Feb 2010 17:55:07 +0000 http://femmenoir.net/?p=5896#comment-1172 I do understand and that is why I am considering (or reconsidering) my initial thoughts on the drug. That said, I chose not to take the drug because I know of two people who are legally blind and they were told it was because of the drug. Unfortunately for both, regular eye exams were not offered to them prior to their experiencing vision loss. I was told I would be given a referral to see an eye doctor but the referrals never came. I asked my doctor twice about these referrals and still they never came. The point was for me to have an eye exam prior to taking the drug and regular eye exams during the course of my treatment with the drug. Since the referrals never came I was not going to take the risk. Added to that, I had an experience with prednisone too that was supposedly rare and typically happens after prolonged use. It was scary, I had just started taking prednisone, and what I experienced was not supposed to happen when it did but it did. Now I read up on everything, I consult the PDR regularly, I ask my mother lots of questions and I ask questions of others with lupus. We are all different. I wanted to talk about the study and the benefits found via this study because it's important to know. At the same time, because many folks get to spend 10 minutes with their doctors (more if they're lucky, less if they're not) they need to know all of the "scary stuff" just in case. Because of the experience I had with Prednisone, I ask my doctors everything and together we make decisions about my care and how to proceed. I do understand and that is why I am considering (or reconsidering) my initial thoughts on the drug. That said, I chose not to take the drug because I know of two people who are legally blind and they were told it was because of the drug. Unfortunately for both, regular eye exams were not offered to them prior to their experiencing vision loss. I was told I would be given a referral to see an eye doctor but the referrals never came. I asked my doctor twice about these referrals and still they never came.

The point was for me to have an eye exam prior to taking the drug and regular eye exams during the course of my treatment with the drug. Since the referrals never came I was not going to take the risk. Added to that, I had an experience with prednisone too that was supposedly rare and typically happens after prolonged use. It was scary, I had just started taking prednisone, and what I experienced was not supposed to happen when it did but it did. Now I read up on everything, I consult the PDR regularly, I ask my mother lots of questions and I ask questions of others with lupus. We are all different.

I wanted to talk about the study and the benefits found via this study because it’s important to know. At the same time, because many folks get to spend 10 minutes with their doctors (more if they’re lucky, less if they’re not) they need to know all of the “scary stuff” just in case. Because of the experience I had with Prednisone, I ask my doctors everything and together we make decisions about my care and how to proceed.

]]> By: Mary http://femmenoir.net/2010/02/02/antimalarial-drugs-may-help-with-lupus/comment-page-1/#comment-1171 Mary Wed, 10 Feb 2010 16:51:08 +0000 http://femmenoir.net/?p=5896#comment-1171 I would consult with the Lupus Foundation of America before posting this information. The LFA's website says "With the low doses of antimalarials used in the treatment of lupus, the risk of this complication is extremely low". Several other sources also indicate that retinal damage is rare and usually reversible if caught by regular eye examinations. Although negative side effects are necessary to know, it is also important to give a balanced view of the medication. I would consult with the Lupus Foundation of America before posting this information. The LFA’s website says “With the low doses of antimalarials used in the treatment of lupus, the risk of this complication is extremely low”. Several other sources also indicate that retinal damage is rare and usually reversible if caught by regular eye examinations. Although negative side effects are necessary to know, it is also important to give a balanced view of the medication.

]]> By: Fellow Lupus Sufferer http://femmenoir.net/2010/02/02/antimalarial-drugs-may-help-with-lupus/comment-page-1/#comment-1169 Fellow Lupus Sufferer Mon, 08 Feb 2010 14:27:18 +0000 http://femmenoir.net/?p=5896#comment-1169 It should be noted that such retinal damage is able to be prevented with regular eye exams. Also, even when damage has occurred, when it is caught (which it should be if you go to the regular eye exams), it is usually reversible. I appreciate you posting great and interesting information about the study. Overall, however, I believe that it is important to note the complete picture about the drug and the side effects, not just the scary stuff. Otherwise your post may potentially scare off someone who could really benefit from this drug. It should be noted that such retinal damage is able to be prevented with regular eye exams. Also, even when damage has occurred, when it is caught (which it should be if you go to the regular eye exams), it is usually reversible. I appreciate you posting great and interesting information about the study. Overall, however, I believe that it is important to note the complete picture about the drug and the side effects, not just the scary stuff. Otherwise your post may potentially scare off someone who could really benefit from this drug.

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