View Full Version : Has anyone weaned off all medications?
03-23-2010, 05:14 PM
Hi everyone! I was wondering whether anyone has weaned off all their medications? I've been diagnosed with SLE about 4 years ago. I used to take CellCept, Lisinopril, prednisone, Plaquenil (generic brand - hydroxychloroquine- I'm still taking this one). My bloodwork and urine results were good according to my last doctor's appointment. Do we have to be on Plaquenil for the rest of our lives? I'm going to ask my rheumatologist when I see her next.
03-26-2010, 08:47 PM
I think the latest trend is to keep patients on Plaquenil long-term. I did go off Plaquenil for a short time, last summer for about a month. But then I started feeling bad agaiin, pain, fatigue especially, so the rheumy put me back on it. I dont't mind all that much, though, because I know it helps.
Whenever I'm in a major flare, I go on Prednisone, 30mg to start, then taper off slowly. I haven't needed it since the late fall/early winter and I'm hoping I can stay off it until the fall...we'll see.
03-28-2010, 05:44 AM
Hi, I have found that most of the meds I take are the ones I have to stay on.
dang I started this list and just about e erything is on it!!!!
Well, I think I agree also about the plaqinel (I take the generic also)
I think the benefit of that one out weigh the thoughts of being off it.
So good luck with your meds,
04-04-2010, 02:40 PM
thanks for all your replies. I guess plaquenil will be a part of my life. I'll try anything to stay feeling good...
04-23-2010, 06:55 PM
I stopped my Methotrexate last October. I stopped due to vomitting blood, which until we figured out the reason I didn't want to take the Meth because of the nausea it caused. I was off of it for a couple of weeks and realized that I felt better than I had in quite a while. So, I stayed off of it. I have had a few "small" issues since going off, but nothing major. I feel better than I have in the past year. Mind you summer hasn't hit yet, so we'll see what happens. I also am trusting in God that I'm feeling so much better. (Not wanting to start a debate.) I'm not saying that it's okay to go off your meds, but just wanted to respond since I had. Best of luck to you!
04-26-2010, 12:17 PM
i don't know if we will have to stay on plaquenil for the rest of our lives, but until something better comes along, i think probably so. My dr. says yes, it is long-term. I tried to reduce my dosage last year after starting methotrexate, but i started feeling worse, so i went back up to 400 mg per day. i am trying to keep my hopes up that some of these new "promising" medications will give us our lives back.
04-30-2010, 09:32 PM
I never stopped taking meds since my diagnosis. My doc says I should take Plaquenil for life. I tried to stop it, but in a few days the pain returned so I am still taking it and skipping 2-3 days from time to time, so my liver can relax(so I think).
BUT, when I was in the hospital for a week I met 2 women, that haven't been taking any meds for 15 years. Both of them said "For the last 15 years I FORGOT I have lupus". But then one of them had a big flare after 15 years being healthy, the other lady didn't have a flare and she was still feeling great without medications, but tests discovered she has kidney damage, so she had to stay in the hospital for a while. I also met a girl, who wasn't taking any meds for the last 7 years and was feeling great, until a very big flare. So it is possible to be without any medications for a long time, I guess when lupus goes into real remission.
05-04-2010, 09:53 AM
I suspect that those who have weened off the meds don't spend thier time on web forums talking about it - so you may not get the response you're hopeing for to this post but it's the demographic of us - we're here because we have active lupus -
05-04-2010, 10:31 PM
Well, I've weaned off of all medications for my Lupus (other than NSAIDs). However, I am on a plethora of medications for Fibromyalgia, Raynaud's, IBS, TMJ, and other issues! :wacko:
It took me the better part of 10 years to finally get off of Lupus meds...
Peace and Blessings
05-05-2010, 08:06 AM
I was on medication for 5 years (steroids and azathioprine), and on plaqenil for1 year. I have been medication free for a year and a half now. It is difficult to weane off medication, more so psychologically because you are worried about how your body will cope without any meds. Doctors sometimes keep you on meds for the sake of it - i found that plaqenil wasn't really of any benefit at all, if anything just deteriorated my eye sight
I am off the meds for lupus have been for three years but do take pain meds for fibro, and inflamation in my back. so again we are all different with our symptoms an what we have to take so you never know you might be off meds soon or not at all.
06-07-2010, 01:57 PM
I agree with steph87 that the tough part about weaning is the psychological part. I was nervous going off prednisone and tapering off cellcept I've been anxious about little things like a cold that lasted too long and a bruised knee that hurt too long.
I also take hydroxychloroquine and have been told I'll be on it as a maintenance drug (which I think means forever)
06-11-2010, 09:33 PM
When I started on the hydroxychloroquine my doctor told me I could only stay on it a few years. Well it's been a few years now and still on it.
06-11-2010, 09:58 PM
When I was off medication for 7 months waiting to see my new specialist I felt horrible and I got really sick. I've been on prednisone since march 10th and I started Chloroquine in May and I've been feeling better, not perfect, but better than being on no meds at all. I'd LOVE to be on NO pills but I was told its dangerous, so how can someone wean off all medication?
Well, until a cure is found, we will always have Lupus. People who go into remission are not Lupus-free. I wish they were. Many of the meds we take are pretty harsh, with some nasty side effects, but Plaquenil is a pretty decent drug, and it can be taken long term as a maintenance drug without any major problems, just be sure to see the opthamologist from time to time to monitor for retinal damage. I've been on Plaquenil for the better part of 6 years now. Weaning yourself off of all meds can be very dangerous, so please approach this idea with caution. You don't want to give Lupus the upper hand, ever. For those who have successfully weaned off the meds and are doing well, my hats off to you. I'd like to be able to do the same someday, but it don't see it happening for me.
06-12-2010, 06:59 AM
I agree with Rob, it's not good for us to wean off meds completely. There are days when I don't take my meds. Then I pay for it for the next week. I'm paying now for being to busy at work to stop & take my pills. Now I've spoiled my weekend. Plaquinel has helped me too much to want to get off it. But I can say that i'm completely off the prednisone now.
the wingless one
06-12-2010, 02:13 PM
I'm trying to wean off my meds to prepare for pregnancy (although I've been told they will probably keep me on a low dose of prednisone if/when I do get pregnant) and it does seem to be having a negative effect on my health so I'm not sure if I will be able to go through with it. I'm not currently on plaquenil but in the past I've had rheumy's tell me that plaquenil is sort of like an insurance policy so it's something they pretty much prefer to keep you on even during remission. They like it because it has few side effects (just need to make sure you get bi-annual eye exams).