I have heard that it slows the progression of the disease, but are there actual studies or some kind of reliable information that this is true?
EnjoyLife said:
Hi. I've been on it for some time now. A few things to know are; as the others said, you need to get your eyes checked regularly but the actual incident rate for toxicity is low. It takes a good 4 months to build up in the system before you start feeling the full effects of the med. You may have some effects in the beginning like nausea that will go away. For me, it did a lot of good with the fatigue and it slows the occurrence of flair-ups. The joint pain isn't as harsh either. Please remember too that it slows the progression of the disease but isn't going to totally eliminate it. It can be hard to judge….but you may have felt a whole lot worse, much sooner without the med. It really is something to work through with your doc. One of the things I mention to people is that I ask tons of questions and I ask those questions of each of my docs. Everyone has a slightly different way of explaining things which can make more sense than others. And they all have a little tidbit of knowledge the others may not have mentioned. Put together, I feel very well informed in the end.
depends on what they are studying........SS is not a defined disease but rather is a syndrome. From a research standpoint, its a huge difference. Only one patient matters - the one taking it. If it works its a wonderful med. If it works for all but One in Ten million, and you are the one, its crap. mcspires said:
I have heard that it slows the progression of the disease, but are there actual studies or some kind of reliable information that this is true?
EnjoyLife said:
Hi. I've been on it for some time now. A few things to know are; as the others said, you need to get your eyes checked regularly but the actual incident rate for toxicity is low. It takes a good 4 months to build up in the system before you start feeling the full effects of the med. You may have some effects in the beginning like nausea that will go away. For me, it did a lot of good with the fatigue and it slows the occurrence of flair-ups. The joint pain isn't as harsh either. Please remember too that it slows the progression of the disease but isn't going to totally eliminate it. It can be hard to judge….but you may have felt a whole lot worse, much sooner without the med. It really is something to work through with your doc. One of the things I mention to people is that I ask tons of questions and I ask those questions of each of my docs. Everyone has a slightly different way of explaining things which can make more sense than others. And they all have a little tidbit of knowledge the others may not have mentioned. Put together, I feel very well informed in the end.
I actually had my ss go into like a remission for a few years but it has come back here the last 4 years but I did have about 5 years of very light pain and it was good I took plaqueniel for 3 years and in remission for about 5 years all total
Research any medication that you are currently taking. Thoroughly research SS. Get to know it, Keep a log of foods you eat, what your symptoms you are having, time of day you feel the worse etc. to help you learn how to help your self. Eat foods that help with inflammation. Stay out of direct sun light. Ask lots of questions to your Doctors and most importantly remember what might work for one person might not work for you. We are all on a trial by error here. You have do find the meds that work for you. Plaquenil is the only prescription med I do take been on it for over a year. No side effects. I was in a flare when I started and stopped because I didn't see any difference, once I stopped I truly felt like I was dying. I would never stop again unless it was life threatening. I take supplements for inflammation and eat Berries, lots of Berries, fruits, veggies, no sugar, no fast food, No soda. Complete life style change. 8 hours sleep a night is mandatory for me to deal with the symptoms of SS. Weight loss has helped too I believe with the fatigue, I lost 32 pounds.
Its a long hard road ahead, but taking control of your life and SS is very important. Life style changes help. Just educate your self so that you can make sound decisions regarding your treatment.
I've been on generic Plaquenil for about 12 years. I did stop it for a few months but my Rheumy convinced me to try it again and increased my dose to 400mg. I've never had anything but 100% on my visual fields test and I think it does help control the frequency of flares. My aunt was recently diagnosed with RA and her Rheumy advised her to take Plaquenil. She read up on it and was going to refuse due to the possible side effects. But when she found out it's what I take, she tried it. She's still not well managed, but she's getting there. Since my Rheumy isn't sure if I have Lupus primary, I'm still being treated like I do and he is keeping a watch on my labs so I don't have to see a Nephrologist anymore. I'm unable to take NSAIDs for pain and Flexeril doesn't help. I completely understand different things work for different people and since we all have a different experience with SS and other issues with it, it's tough. It is a comfort to know other people have the same issues. Some doctors act like we are making is up to get pain meds or claim disability because there is no simple test. And the symptoms vary in such a way they don't make sense. I will say that Plaquenil affects my temperature, my normal is between 96.5 & 97.3, most doctors refuse to treat for the flu unless you run a fever. My previous MD knew my history and considered 98.9 a fever. I had the flu last winter my temp went to 102.3....I hadn't been taking my Plaquenil.
I've been on generic Plaquenil for about 12 years. I did stop it for a few months but my Rheumy convinced me to try it again and increased my dose to 400mg. I've never had anything but 100% on my visual fields test and I think it does help control the frequency of flares. My aunt was recently diagnosed with RA and her Rheumy advised her to take Plaquenil. She read up on it and was going to refuse due to the possible side effects. But when she found out it's what I take, she tried it. She's still not well managed, but she's getting there. Since my Rheumy isn't sure if I have Lupus primary, I'm still being treated like I do and he is keeping a watch on my labs so I don't have to see a Nephrologist anymore. I'm unable to take NSAIDs for pain and Flexeril doesn't help. I completely understand different things work for different people and since we all have a different experience with SS and other issues with it, it's tough. It is a comfort to know other people have the same issues. Some doctors act like we are making is up to get pain meds or claim disability because there is no simple test. And the symptoms vary in such a way they don't make sense. I will say that Plaquenil affects my temperature, my normal is between 96.5 & 97.3, most doctors refuse to treat for the flu unless you run a fever. My previous MD knew my history and considered 98.9 a fever. I had the flu last winter my temp went to 102.3....I hadn't been taking my Plaquenil.
I've been on generic Plaquenil for about 12 years. I did stop it for a few months but my Rheumy convinced me to try it again and increased my dose to 400mg. I've never had anything but 100% on my visual fields test and I think it does help control the frequency of flares. My aunt was recently diagnosed with RA and her Rheumy advised her to take Plaquenil. She read up on it and was going to refuse due to the possible side effects. But when she found out it's what I take, she tried it. She's still not well managed, but she's getting there. Since my Rheumy isn't sure if I have Lupus primary, I'm still being treated like I do and he is keeping a watch on my labs so I don't have to see a Nephrologist anymore. I'm unable to take NSAIDs for pain and Flexeril doesn't help. I completely understand different things work for different people and since we all have a different experience with SS and other issues with it, it's tough. It is a comfort to know other people have the same issues. Some doctors act like we are making is up to get pain meds or claim disability because there is no simple test. And the symptoms vary in such a way they don't make sense. I will say that Plaquenil affects my temperature, my normal is between 96.5 & 97.3, most doctors refuse to treat for the flu unless you run a fever. My previous MD knew my history and considered 98.9 a fever. I had the flu last winter my temp went to 102.3....I hadn't been taking my Plaquenil.
As far as Plaquenil's effects I can only tell you of my experiences. I'm very sensitive to medications and their effects but in the last three years have had no side effects. I can tell you it hasn't made a huge difference in how I feel but I believe it has helped with fatigue. I get my eyes checked every 6 months and have had no problems. Doctors have wanted to put me on some very strong med's and I've chosen not to go on them due to the side effects. Of all the drugs offered I feel the safest on Plaquenil, also there is a generic that's very inexpensive. Hope this helps with your decision, good luck!
I am so happy to hear someone else saying their temp runs low….and that if it creeps up to "normal" it is sign of being sick. It happens to me too….drives me nuts. My father doesn't have any AI but if he is really sick his temp drops quite a bit.
As for Plaquneil, I've been on almost 2 years and I'm definitely a fan so far. It does take time to build up in your system and there are a few side effects in the beginning that do go away. Overall very worth it to bring the fatigue to manageable vs debilitating.