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FranzeeSmith
08-03-2011, 07:07 PM
Can you go into remission if you don't take meds? I know the pain would just be awful, but is it possible? Are these meds helping our immune system? Also, for those that are in remission how long has it been? So:skeptical:rry if I word things weird, my brain is always scrambled and don't know why.

rob
08-03-2011, 08:20 PM
Hi Fran,

Remission. That's a subject that doesn't get talked about much. I would guess that it doesn't happen enough to really be a major topic, although it's something we all hold out hope for.

I'll be straight with you-

I don't know of anyone with Lupus who has stopped their meds, and gone into remission. However, I do know of some people who have stopped their meds, and have paid the ultimate price for it. There have been, and unfortunately still, will be people with Lupus who for whatever reason, stop their meds, and as a direct result of this decision, die.

I'm not telling you this to try to scare you, or to try to influence your own decisions in the coming years as to how to best control your Lupus symptoms. My hope, is that people will make informed, and realistic choices in their pursuit of controlling this disease. Choices that will give them the best chance of living a long, and productive life. For now, the meds are the best choice in my opinion. I'm going on 8 years now since my diagnosis, and my Mom is nearing her 23rd year of living with Lupus. Neither of us have had anything that I would call a real remission, but we both have some really good days, and we both are steadfast in taking our meds.

Have hope. Living with Lupus is a difficult thing to do, but we both have had more than enough good days to cancel out the bad ones. I think of it as remission on an installment plan.

Rob

FranzeeSmith
08-03-2011, 09:18 PM
Hi Fran,

Remission. That's a subject that doesn't get talked about much. I would guess that it doesn't happen enough to really be a major topic, although it's something we all hold out hope for.

I'll be straight with you-

I don't know of anyone with Lupus who has stopped their meds, and gone into remission. However, I do know of some people who have stopped their meds, and have paid the ultimate price for it. There have been, and unfortunately still, will be people with Lupus who for whatever reason, stop their meds, and as a direct result of this decision, die.

I'm not telling you this to try to scare you, or to try to influence your own decisions in the coming years as to how to best control your Lupus symptoms. My hope, is that people will make informed, and realistic choices in their pursuit of controlling this disease. Choices that will give them the best chance of living a long, and productive life. For now, the meds are the best choice in my opinion. I'm going on 8 years now since my diagnosis, and my Mom is nearing her 23rd year of living with Lupus. Neither of us have had anything that I would call a real remission, but we both have some really good days, and we both are steadfast in taking our meds.

Have hope. Living with Lupus is a difficult thing to do, but we both have had more than enough good days to cancel out the bad ones. I think of it as remission on an installment plan.

Rob

Thanks for your opinion,Rob. I don't know everything bout this disease so I have a lot to learn! It is still hard for me to believe that I'm going to have this for life. I asked the question because my doctor put me on 200mg on plaqunil and 5mg prednisone and I'm EXTREMELY scared of them both. I was taking the plaq for 2 week and it helped me a little but then I started to get more painful symptoms and thats why he put me on prednisone. I've read plenty of scary things about both of them and others stories just makes me not want to take them. I only 22, I don't want those horrible things happening to me but then again I don't want to die because I'm being a weenie. I'm just torn. Right now I'm feeling better than i have in a while. a few pains here and there so I feel like I'm not hurting enough to take the meds. Sorry I'm rambling I just don't know what I'm suppose to do. Do people in remission still take these meds? Please help me understand more! I truely do appreciate it!

steve.b
08-03-2011, 11:21 PM
i am close to remission.

i am in a better state than i have been for about 20 years.
i still see my rhuemy every 4 months.
i still take plaquinel and mtx.

i have other health issues that still cause me grief, but my lupus is excellent.

my point is it is the medication that has me stable.
stop the medication, and the lupus will take over again.

my rhuemy and i discuss my blood tests at every visit, we are learning what helps me. medication is one of them.
it is like my depression medication................
i do not take it because i am depressed. i take it because my brain does not work properly.
the correct medication for me is called depression meds... it is a name, just a name.
my lupus medication is the same........
my body does not work properly, i need this medication to stabalise me.
it is called plaquinel...... but it is just a name. it works for me.

i hope this makes sense.

rob
08-04-2011, 03:49 AM
Thanks for your opinion,Rob. I don't know everything bout this disease so I have a lot to learn! It is still hard for me to believe that I'm going to have this for life. I asked the question because my doctor put me on 200mg on plaqunil and 5mg prednisone and I'm EXTREMELY scared of them both. I was taking the plaq for 2 week and it helped me a little but then I started to get more painful symptoms and thats why he put me on prednisone. I've read plenty of scary things about both of them and others stories just makes me not want to take them. I only 22, I don't want those horrible things happening to me but then again I don't want to die because I'm being a weenie. I'm just torn. Right now I'm feeling better than i have in a while. a few pains here and there so I feel like I'm not hurting enough to take the meds. Sorry I'm rambling I just don't know what I'm suppose to do. Do people in remission still take these meds? Please help me understand more! I truely do appreciate it!

Hi Fran,

It's OK to ramble, I do it all the time!

I've been on 400mg of Plaquenil a day for the better part of seven years. 400mg a day is considered pretty much the safe maximum dose. I'm also 6'1" and 200lbs, so It takes a bit more of most meds for me to have a proper dose. The main worry with the Plaquenil is eye problems. Specifically, irreversible retinal damage. It generally only happens at dosages higher than 400mg. I see an Opthamologist every few months to monitor for this, and I have never had any problems. Without the Plaq, my flares would be horrible. It can take many months for it to start working, so it's not a drug that you take like aspirin for a headache, or stop taking when you start feeling better. It doesn't work that way. You have to stay on it, and keep taking it every day as prescribed to have any beneficial effect. At the proper dosage, it is a very safe drug, and eye damage is quite rare. Without Plaquenil, my quality of life would be, well, it wouldn't be good. With it, I do pretty darn well most days.

The steroids, like prednisone, are the drug that usually cause people more bad side effects in the long term. I gained a bunch of weight from it when I was first diagnosed. But, after my disease activity calmed down and became controllable, I stopped the oral pred and managed to lose all of the weight and get back into reasonable shape again. I sometimes get the short term dose "taper pack" of pred if I have a lot of inflammation, and it does wonders without any real lasting side effects. I also get an IV infusion of Medrol every other month, which is a different form of pred, and it also does wonders for inflammation. It does give me nausea, which I take Dramamine/Gravol for the day of the infusion. It keeps me up the night after, and I get the cold sweats, but it passes in a day or two, and I feel really good not long after. It does not cause me the weight gain or other problems associated with the long term oral pred.

I know this is all a lot to take in at first, and I understand your fear, as I've had that same fear too. The meds available to us are something to be taken carefully with proper monitoring by our rheumo and other specialists. And being aware of the possible side effects is important. But Plaquenil and Prednisone are not something to be afraid of.

One thing you definitely want to avoid, is stopping your meds on your own when you start feeling better. For some people with Lupus, it is possible that some meds can be tapered off, and even stopped eventually, but only after the rheumo determines it's safe to do.

Rob

ritzbit
08-04-2011, 04:59 AM
Going off my meds was the worst thing I could have done. I went back on them but had been off them too long. I had vasculitis in my feet that made it almost impossible to walk. Im only 18 and have been on most of my pills since I was 16. Being young and on a bunch of pills really sucks, but being young and being so sick you cant get up sucks even more. I hope you find a good combo with your pills that makes you feel better.

FranzeeSmith
08-04-2011, 04:58 PM
Thank you all for the replies. I now have a better understanding. I guess I was looking at the whole situation wrong. Lupus isn't a "headache"....makes perfect sense. Thank you guys.

lovedbyHim
08-04-2011, 06:28 PM
Hi Fran I am and have been on plaquinil and prednisone for 5+ years. I did gain weight but I was also eating poorly. I am back to what I weighed last year and hiking for hours. I have no side effects from Plaquinil. My eye specialist said in the 12 years that he has been checking people on plaquinil, he has only met 1 woman with eye problems and she was on a high dose. Out of all the drugs I have used to control my symptoms, these two are the least aggravating for me. Nsaids and pain management meds had far more side effects for me.

Fran, I am an earthy natural kind of girl. I hate putting crap into my body. But, I have my life back because of meds. Most of my physical problems come when I don't listen to my body well enough. I hope to get better at this . Good luck Fran.