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Life With Lupus

Not being on any medication for Lupus


#1

I'm in my mid 30's and got diagnosed with discoid and systemic Lupus 2 years ago. I was put on Plaquenil right away. I stayed on plaquenil until 5 months ago. I didn't feel like it made any difference. It aggravated my skin causing issues with hyper-pigmentation and giving me the "pregnancy mask" ( I am not pregnant LOL). I was still tired and losing my hair while being on Plaquenil. I've been taking multivitamins and feeling more energized. I was wondering if anyone has decided not to be on any medications? For those that aren't do you know of the possible consequences of staying off any meds for lupus? I just don't want to take medication that doesn't do anything for me for the rest of my life.


#2

I understand how you feel but please consult your doctor and lab tests before quitting any medications. This medicine can help slow the progression of Lupus thereby keeping it from vital organs needed to sustain your life.
Medications kept it out of my organs when I was suppose to be gone 16 years ago. I’m still here and now taking Benlysta infusions too which helped reverse the start of my kidney involvement.
Please don’t make these decisions lightly and always stay in touch with your doctor.
Good luck hugs.


#3

Hi

I would have said just what Sheri@osaxy said. I have sle. I have been on plaquenil for 3 years. My mouth sores are gone, that alone makes me want to stay on it. I think it does other things I can't see. like help with the inflammation. I had eye issues before plaquenil. I now have interstitial lung disease, mild right now. I'm glad I have the luxury of not having to work because I don't think I could. I don't have depression or under any stress and I think that helps me immensely.

Keep up with your testing, I think that would be a big mistake to stop meds with professionals telling you to stop.

Take Care

Cindy


#4

I agree with lone wolf that a healthy lifestyle is important. My doc did tell me without any treatment for the rest of my life it would continue to get worse. Your situation might be different and you should consult with your doctor before making a decision.


#5

Lone wolf, could you please be more specific about what you do and eat? I’m not anti medicine at all but also try to do everything I can to be healthy. I cut gluten and dairy and eat healthy but it hasn’t helped. I’d love to hear what you do.


#6

Many people have reactions to various meds, which makes them choose to ask for something different or go off. For me, I am super sensitive to most prescriptions, they make me sicker than the lupus does, so I don't take anything for lupus. i have had it for almost all of my life (50 + years) and I frustrate doctors because I can't take what they offer. in my case I think I have been better off without the medicine's side effects, but I can't say that would be true for everyone.


#7

I too would appreciate more insight from Lone Wolf not only on your diet by also on what herbals you may be taking as well.


#8

Hi!, havering Lupus of any sort comes differently for all! I have been on this med for 4years and I really have never had no problem. But as the old saying goes, “we are all different , and what work for some and no others”. Or this one “what is good for goose is not good for the gander”. stick with what the doctor think and be careful being off yourmeds , if the doctor don’t know…Beverly L.


#9

ii havent been on meds for the last 2 years and then went back on now off for 6 months. Plaquinil made hair fall out and made me angry. But if i want to stay off the meds i have to excersise daily. And practice stress management. Take 5,000 d and 200 e. Eat lotsof raw foods. Supplement with curcumin as my antiinflammatory take ashwaganda for stress stress makes my lupus bad. And avoid dairy. If i stop doing these things i have to be back on meds that usually stop working anyways when ihave a flare i sleep alot and take ibprofen anf curcumin and it usually goes away. Best of luck to you! If i can do it you can too just always get your blood work done:-)


#10

I am 56 yrs. old, and just got diagnosed with lupus last July, 2014. I have had it for probably close to 15 years at least, and it was never diagnosed...they thought I had ovarian cancer, hence, a total hyst. at 46...thank goodness my family was complete. then I had a tumor in my chest, which had to be removed, the doctors were stumped.

Now, the rhuemy said I probably had it all the way back then...She put me on Plaquinel...

It has made a huge difference in my life. I had NO IDEA how bad I felt until that kicked in....

Don't quit your meds until you talk to your doctor. there might be other things going on.

Good luck! Blessings forward!


#11

I've been off meds just over 2 years, the consequences I was warned of haven't happened yet; I have multi organ damage including heart and lungs, I'm no better or worse, my damage is permanent, the meds were to control symptoms, and they caused more damage. Talk to your doctors before you stop any meds, I know for me its a huge gamble, everyone is different, I've just been lucky so far...


#12

Plaquenil made my hair STOP falling out.

Cindy


#13

hi after taking this med. ,for 4 years and two of them not as so much as everyday .now the new doctor who assist my regular doctor wants me to start back taking them everyday once again. But am not doing that move until my Dr. , comes back off vacation . Making sure that my Lupus won’t start up , because of this intake . Sound crazy -new drs., really never seen her B4…oh ! No …Beverly L.


#14

I was on Plaquenil as well.. I dont feel it helped me any.. I still have lots of pain and a very sensitive scalp with lots of hair loss. I go to my dermatologist next month so I was going to ask her to switch me to maybe presnadone. I hear a lot of compliments on it.. I also have lost a lot of weight, hopefully we can figure something out


#15


I recently had some blood work and my results are better then when I was on plaquenil. My ANA levels are much lower and my skin is looking a lot better. These results are encouraging me to stay off of plaquenil. All my doctor can say every visit is "studies have shown that lupus patients should be on plaquenil for life". I feel like I am a study to her and a not a person


Sheri @osaxy said:

I understand how you feel but please consult your doctor and lab tests before quitting any medications. This medicine can help slow the progression of Lupus thereby keeping it from vital organs needed to sustain your life.
Medications kept it out of my organs when I was suppose to be gone 16 years ago. I'm still here and now taking Benlysta infusions too which helped reverse the start of my kidney involvement.
Please don't make these decisions lightly and always stay in touch with your doctor.
Good luck hugs.

#16

Lupus is an anything goes disease- you can feel well for months or years then BOOM Once in a flare it can be hard to get back under control and often permanent damage is done to vital organs in the meantime. Plaquenil is a drug that altho it may not make you feel better it can minimize the devastating effects of uncontrolled autoimmune disease. And having 'mild' lupus is no guarantee that a life threatening flare will not occur. After being in a relative remission for more than 10 years I went off my plaquenil and a few months later entered into a life threatening flare, affecting multiple organs which 4 years later is still not well controlled- I regret daily going off that drug cause I didn't need it or it wasn't doing anything


#17

Hi! Chanel, Plaquenil hss helped me since day one, (Feb 7, 2011- Mar 5 2015), I wouldn’t change for Nothing. But do talk to ur doctor B4 u do this. …Beverly L.


#18

Very well put Ann!! You have to know your own body and how it works. I know what works for me and it is plaquenil for now. I also use accupuncture, chiropractic, yoga and meditation. I will not push my ideas on anyone else however.


#19

Hi, I have been on Plaquenil for only three months, and I have lost so much hair ------ does this stop or continue. Once stopping the drug does your hair ever grow back? I’m very disappointed at the side effect of this drug.


#20

I forgot to mention before that it took at least 6 months for the plaquenil to kick in for me. I didn't lose my hair, but I never felt so bad in my life and I will not stop taking it. I never want to have another lupus flare, so far so good! Hope you find an answer.