Quantcast

Life With Lupus

Not being on any medication for Lupus


#21

bravo!!! well said I really like that idea, the body is mine.



Ann A. said:

i have not taken meds for lupus for quite sometime.It has not been a part of my daily routine for decades My bloodwork encouraged a new doc to say that I do not have lupus - then I went sunbathing and he changed his mind quickly. Last week I got a splinter of glass in my foot. Without thinking, I used a full spectrum lamp to find and remove the sliver of glass. in less than five minutes every part of my hands that had been exposed was covered with a rash. that lamp does not live here anymore. I tend to think of the lupus as being in remission and I try to keep it that way. for me the most important part of living with lupus for 47 years has been identifying and avoiding triggers.

new physicians always want me on meds, then they see how badly I react to them and they set me free. i do eat well. After I retired I took some time and earned a degree in holistic health and nutrition education. I don't work with clients but I keep myself going pretty well -until a new doc shows up and wants me to try what he thinks is the latest miracle drug. getting over one of those experiences right now.

If UV is my main trigger then stress is close behind. A couple of decades ago, I was lucky enough to have access to a mind-body medicine center at a local hospital. i derive great benefit from acupuncture, massage, hypnosis, meditation a other autogenic techniques and exercise, especially swimming.

I am not leaping tall buildings or catching bullets in my bare hands but I am doing just fine for a woman of 68 who was dx with her first autoimmune disease when she was 10 and who lived into her 60s with undiagnosed congenital malformations, painful ones.

As long as I avoid UV, eat well, sleep well, get the right amount of exercise, and cope actively with stressors, lupus does not become the center of my life and the physicians stop stressing me our about meds.

I do believe strongly in the concept of BIOCHEMICAL INDIVIDUALITY. What works for most may not work for all. I believe that we should have the freedom to explore and learn what works best for us. My insistence on that is too a large extent why I am still here. In the end, when I own nothing else in the world, THIS BODY IS MINE.


#22

The hair loss stopped for me at around 6 months. I too was very upset but the med was really helping me. The hair has grown back just as good as before. It is actually a little wavy now instead of straight. Hopefully it does the same for you.



boo too said:

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.

#23

Brandy, thank you for your reply. It makes me feel so much better and hopeful ---- have a beautiful day!


#24

From what I understand the benefits of plaquenil is something you can't see. How do you know it isn't helping if you can't see it?? Does that make any sense??

Cindy


#25

I guess it's a case by case basis. My ANA levels have been lower and I am not getting awful skin rashes with blisters since being off of the plaquenil. There is nothing alarming coming up in my blood work and I feel more energized. Having seen these results does not encourage me to go back on plaquenil

freightliner said:

From what I understand the benefits of plaquenil is something you can't see. How do you know it isn't helping if you can't see it?? Does that make any sense??

Cindy


#26

You are one of the only people I have known to take Ashwaganda root besides me. I have have much less pain in my hands and you said you take it for stress. Does it help your joints as well?

janelle said:

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:-)

#27

I have had lupus for over 2 years and have fought it without any medication for about half the time over different periods of time. I’ve noticed that without the plaquenil my bones and muscles are achy in fact I am always in pain every second now since the plaquenil left my system. Also I get more headaches I’m more fatigue. I’m more sensitive to the sun. And my menstrual cycle is a lot harder on me because of the amount of hormones. With that being said I’ve chosen to stay off of the plaquenil because I am very easily moody and bipolar on any dose of any medication. And I’d rather have my sanity than feel a little better. Because that’s all medication ever makes me feel is a little better.


#28

What about the plaquenil protecting your internal organs? I'm sure if your doctors know how you react they can adjust medication for you. Do you take medication for your mental health? I have never heard of anyone being emotionally affected by plaquenil. Just take good care of yourself for the long run.


#29

Hello, hope that you have / did talk with ur doctor B4 u made this decision? I know how u r feeling to some extent, but remember that SLE Lupus is nothing to play with. I don’tEan to sound so Blunt , but I have SLE also. ComING off this med completely (unless it is under control ) is not good . Not to discourage u , but male sure that u still visit with ur doctor , my prayers go to u …Beverly M.


#30

I was very interested in reading all the replies here. I have just be diagnosed with Lupus but I do know that a lot of the medications used for Lupus are also used for other autoimmune disorders that I have and I react so violently to them and have even ended up in the ER with a few reactions.


#31

I gradually was using a low dose of Prednisone. The anti inflammatory party is amazing but the emotional up and downs totally sucks. I haven’t been on medicine for about years. I still feel horrible fatigue etc however, my labs were actually better when I wasn’t on the medicine. I have been eating a clean diet stay away from tomatoes sauces and night shade vegetable. Juicing Spinach,apples,cucumber,carrots, and lemons. Lower sugar intake and make sure I exercise the min of 3-4 days a week. I do lots of low impact exercises like walk treadmill 20-30 min and do pool exercises. I have SLE and MCTD for about 20 years now and doctors are really surprised that I made it this far. When I was taking the infusions and other medicines I felt horrible/got to skinny/and labs were crazy. I am a point in my life where I still don’t feel well but I have know idea what other medicine options I have.