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Life With Lupus

Anyone with Lupus who doesn't take meds for it?


#1

So lately I've been getting this one question alot-- "Have you ever tried not taking meds?" or "Why don't you try not taking meds?" in addition to the input of "If I were in your position, I wouldn't take meds." etc. And as I was pre-pouring my meds last night and calling in perscriptions, I kind of wondered what it would be like if I didn't take any medications...

So I'm just wondering if there is anyone who doesn't take meds for their Lupus. And if so, how it impacts you? Like do you get sicker more, are you in more pain than those who are on meds? do you control your lupus differently? do you do any natural alternatives, etc? I just want to know how my life would be different compared to how it is while I'm on all of these medications. basically I want to know anything and everything, and I don't even know if I'm wording these questions right or if I'm even saying properly what I mean to. And I'm aware this is something I need to discuss with my doctors, but I like hearing from people who are going through it themselves too.


#2

It really depends on what parts of your body your lupus is affecting- everyone is different For me without meds I would die- plain and simple as I have multi system organ damage However there was a long period of time I was in remission of sorts and only took motrin for pain. Knowledge is power in helping you make these decisions and faith in your doctors is a must Unfortunately this disease can be ever changing so you may be perfectly safe with no to minimal meds at times and at other times need aggressive medical management.


#3

I definitely agree. And that's definitely what worries me most is how day-to-day Lupus can be. One day you're fine and the next day it can be a complete 180. And I trust my current doctor completely, I think it's gotten to the point where he knows me better than I know me, lol. But I also love being outside and in the sunlight, even though I know we need to be extremely careful and limited with that. So that's the other major thing that I feel I need to kind of stay on meds.

Thanks so much for your input!! Hope you have a great day!


#4

When I don’t take meds it’s not pretty. Sometimes I run out due to money. Even within a wk things start falling apart. If I don’t have plaquenil extreme fatigue starts, my hair really starts falling out and I get a lot of sores in my mouth, nose and on my scalp. I can see how beneficial it is to take plaquenil. With my muscle relaxer and tramadol, even one day and I am in so much pain. My muscles are always feeling like they are in a vice. I had a brilliant dr tell me once he didn’t believe in meds. He kept plaquenil but took me off of everything else. In one years time I had spiraled down and now four yeas late,r even with the meds back, have never got to where I was originally. Very bad idea! I think for plaquenil, or whatever maintenance you are on for lupus like methotrexate etc, it’s the same as not taking chemo if you have cancer. Sometimes, We can monitor if we can cut out a med or two but there is a reason we take them


#5

That's pretty scary and definitely my concerns. I too take plaquenil so I can relate to that. Thanks so much for your reply!!


#6

I have multiple organ damage. I don't take meds for the lupus itself, such as plaquenil or cortisone or biologicals, etc. but I have to take insulin for pancreas damage and pain meds and I take supplements to replace other things my Dr. suggests because I react so badly to chemicals and prescriptions. She helps me find these alternatives or I check with her when I find what I want to try. So I'm still on a lot of stuff for symptoms, just not for the lupus itself.


#7

I personally begged to be weaned off plaquenil and prednisone. I have been taking lupus meds on and off for almost 8 years now. There are seasons im in remission but the uncertainty of the disease always brings me back to taking these unwanted magic pills. It’s been 3 weeks now that Im completely off the prednisone but oh boy mornings and bedtimes are tough for me. Bedtimes are hard i couldnt sleep my heartbeat is so fast i feel i could almost die. Mornings are even tougher because of the fatigue and joint pains and feels like my blood is boiling i feel very warm inside. And now mouth ulcers are back and hello to hair loss.Despite all of these i dont complain at all to my doctor. Ive decided that if i could simplify my life, fix my diet and manage my stress I could also manage the pain and lupus. Based on experience food affects my level of inflammation and so does stress. This is my personal journey and i wouldnt recommend this to anyone. It’s risky but i could not stand also the complications of lupus preds. I can see now the side effects on my bone density and the depression due to so much weight gain. Now im beginning to lose the prednisone weight and the moonface. Despite the minor pains I am a lot happier these days without the meds. I think it’s all in the mind set that I will get better on this journey. Trying to simplify life… Just trying to live…


#8

I am in the process of getting off the mess but my face swells up and the confusion sets in. I don’t really have pain, with the lupus.


#9

I stopped all my meds several months ago, I've not always been compliant with my doctors requests in the first place. I have multi organ damage, discoid lupus, and a whole list of other medical problems. it started with taking what I called medication breaks to give my body a chance to relax, for 3-5 days at a time, the more I did this the more I noticed that the meds weren't making a whole lot of difference so I just stopped taking them all together. Everyone's lupus is different, what I'm doing is risky and down right dangerous I don't recommend it to anyone. My life is the same, I'm still homebound, and still have the pain and various medical problems, at the time I stopped my meds I had 20 different medications daily, they weren't all for lupus but for all the other problems and some were even to treat the side effects of some of the meds. I have a very simple way of dealing with all of it I don't mind and it don't matter. I think life is too short, I've spent over 20 years fighting this, I'm happier without all the meds, and at least for me they didn't seem to have much of an impact on my health as being without them hasn't hurt me either. I pretty much do whatever I want, sometimes I pay the price by being down for days, or get sick because I ate something I'm not supposed to. I figure I don't have much to lose, lupus has pretty much taken all the good stuff including my hair and teeth, LOL, its ok it is what it is . I don't advocate anyone stop thier meds, as everyone's lupus is different. This works for me, then again I've always been a bit of a gambler, Take care of yourself.


#10

Hi
I am completely med free. After years of taking all the meds i was suppose to and still having horrendous flare ups i decided to try life without the 36 pills a day i “had to have” I believe that taking my meds has made me worse because my kidneys fail trying to process it all. So much so that 18 months ago i had to hve one kidney removed as it was completely useless. I have SLE like most of us on here and it has attacked multiple organs the worst being hit are the heart and kidneys. It gas also caused peripheral neuropathy and has paralysed me from the waist down. All of these major problems happened when i was on meds and i figured what’s the worse that can happen if i stop. All the meds were destroying my bone density and remaining kidney, I’m seeing things long term, if i continued to use the meds id be looking at no kidneys and lose the use of my arms as well, so although the pain im in daily has quadrupled since being off them hopefully it will give me a better long term future. This is a personal choice that I’m sharing and I’m not at all trying to persuade others to do as i have done, this is how i have decided to cope with my long term life. Hope this helps x


#11

In my personal experience when i stopped the lupus only got worse i got a regular ear infection that had me in the hospital for a month with septicimia the only time i have heard of someone having lupus and not on any meds is when their lupus was inactive


#12

I like the way that you asked this question. It's a fair one. I sometimes feel like dumping 40 doses of whatever out on the street. Sometimes it's hard to coordinate the meds cause they throw in an antibiotics that you can't take with this or that.

I have on occasion given myself a 24 hour holiday on my meds. And, yes, I feel it by just feeling lousy. It may take up to a week to get sufficient blood levels of the drugs so that they work again.

Staying on the meds is a good thing for me. Going on a organic diets as best as I can has made a big difference and I lost weight. If I can't get organic, I make sure that there are no GMO in the food. I've done extensive research on the GMO stuff (grrrr). If you want the URL of a British data base. Just let me know your interest. GMO is so bad it can kill you and cause cancer and tumors.


#13

I agree.



poobie said:

It really depends on what parts of your body your lupus is affecting- everyone is different For me without meds I would die- plain and simple as I have multi system organ damage However there was a long period of time I was in remission of sorts and only took motrin for pain. Knowledge is power in helping you make these decisions and faith in your doctors is a must Unfortunately this disease can be ever changing so you may be perfectly safe with no to minimal meds at times and at other times need aggressive medical management.


#14

Great question! I’ve often wondered about this too.


#15

I was diagnosed about a year ago, and have been on Plaquenil and Prednisone. I take my meds because:a. I remember how awful I felt without them, and B. I don’t want to risk any organ damage. Maybe someday I will stop and take a medication holiday, but not yet.


#16

I still take plaquenil but I have a friend with Lupus that stopped taking it and she got sick again. I am like you - I want to stop but I think I will keep on it for now. I stopped eating gluten and I feel great. I have no inflammation anywhere in my body right now.


#17

I do not take the meds. I changed my diet , excercise, drink lots of water and just treat the symptoms prn. Psych meds and mediation has helped me live from day to day.


#18

I too have ask the same question do I need these meds? All I know is I refused to take them for 3 years and my body inflammation went through the roof. I have some lung damage. I have changed my diet as well. For me I think it will be a combination of meds meditation hypnosis diet always reducing stress and a strong spiritual belief.
Good question :slight_smile:


#19

I was diagnosed a year ago so still pretty new to all this. My doctors agreed to not put me on meds and let me try alternative medicine. I’ve changed my diet, quit running and started a new exercise routine. Most days I feel pretty good but now that I’m back to work from a year long maternity leave I am having more bad days then good. I guess it doesn’t help that my job is physically demanding as well as stressful, combine that with 12 hour shifts, it gets hard. I know that when I see my doctor next month we will have to add medications because I spend my days off just trying to recover for my next set of days back at work. I’ve tried to keep my life as normal as possible but realize that something is going to have to change in order for me to get back to feeling normal.


#20

Hi and nice to meet you.

The only med I take is LDN and I don't consider it a med since I take it at a "homeopathic" level. I take it in a cream form at night and have moved up from .05 to close to 2.25. My goal is 3.0.

I do, however, take a slew of supplements. I see a functional medicine doctor who tries to work with diet and nutrition instead of medication that only treats symptoms.

That is why I avoid Rheumies because they only treat symptoms. They typically only prescribe meds.

I believe that the body has great power to heal itself.

Unlike others, my test results might be "better" but its still a challenge.

You have more serious concerns than I do, but at one time I tried many meds for Lupus and found none did any good.

We are in a society where most of us do whatever a doctor tells us without questioning it. I question everything :)

Good luck

Hope you are having a good day.