I was told by my rheumatologist to stop plaquenil after only taking it 8 days due to a rash that developed all over my body. The steroids make my joints feel better but as yall know the side effects are a beast. I already eat clean an do some type of exercise every day- I am wondering if any of you have had any luck going the natural route without Meds. I have no organ damage as of yet thank goodness and certainly do not want to risk that. Thanks ahead of time…
Hi
I'm just curious how you know you have no organ damage. What tests were performed that proved that??
Cindy
I have severe organ damage. My diagnosis of lupus and two other autoimmune diseases (Sjogren's and Autoimmune hepatitis) were ex post facto. This means that I had all of these illnesses were never treated until I was diagnosed at 55. These untreated ADs led to severe cirrhosis of my liver.
Please don't play with fire, stay on the meds. You do risk organ damage if you go off the meds.
You got to hold on.
hey!
I think you're wise to try to go the natural route, especially since you don't have organ involvement.
I have tried everything under the sun over the last 21 years, both natural and medical.
Homeopathy (doing again now), biological dentistry (helped), chelation therapy (helped a lot but was expensive and therefore couldn't do it indefinitely), the nutritional cleanse system I'm on now (helping a lot), acupuncture, massage, lymphatic massage, bodytalk, reiki, hypnosis (didn't help me), qi gong (helped)...
If i had a better idea of what was going on with you I could be more specific with suggestions. we can either keep talking or feel free to PM me or call me 908 616 3482
or find me at facebook.com/carla
if i can be of any help, that would make me happy. this is a big topic for me- getting off the drugs and getting well.
No ex organ damage-no protein in urine,liver scan and other labs are ok. Thank you Carla. I will be picking your brain! Symptoms are butterfly rash ,joint and muscle pain and weakness. , fatigu, swollen lymph nodes…
freightliner said:
Hi
I’m just curious how you know you have no organ damage. What tests were performed that proved that??
Cindy
No diagnosed damage/fatigue *
Have a book I read you might like and I can email you a scan of 2 pages from a natural medicine encyclopedia (the 2 lupus pages)
Please my email is ■■■■■■■■■■■■■■■■■■■■■■■■■■■■ I am so jazzed that you showed up:)
the book is called
Lupus: Alternative therapies that really work (author: Moore)
will send the rest to you email address!
I had already downloaded that book on my kindle. I will read it. Thanks again,
great! let me know what you think of it.
i jsut sent you an e mail with the other stuff!
xoxo
I am going to get this book also. Thanks.
Who claims "Alternative therapies that really"???? The author????
yes the author. And no it’s not me, or anyone I know.
Over the last 21 years I’ve kept a very open mind about alternative therapies. Because of that I’ve been able to get off the immune suppressants and stay off them. And keep me eyes, teeth, kidneys and all other parts. I’ve done numerous things so I can’t point to any one thing and say that was what turned me around. And of course what works for one person may not work for another.
When I saw and experienced the very unpleasant options offered by regular doctors, I decided to look elsewhere so I wouldn’t end up crippled by the meds. I was diagnosed pretty young (25) and didn’t want the results of decades on prefnisone(only effective treatment at that time for me).
We all must walk our own path, but I like to share what has helped me in case it might help others.
I very much appreciate it Carla and am looking forward to learning more:) I am allergic to so much and lost 42 pounds since February eating clean and walking - my first flare started in July. Needless to say I was very discouraged. I started this healthy journey to take away Meds, not add them. I have a special needs 19 year old and I am not giving up on my body.
I’m allergic to Plaquinal also. I go crazy trying to rip my skin off, scratching it with a fork! My Rhumatologist told me there were no other medicines for the treatment of Lupus so that was it! Basically, he was telling me, sucks to be you! He stopped seeing me. Finally, my surgeon who is going to do my rotator cuff surgery referred me to a new Rhumatologist. I will see him in January. So hopefully, this new doctor will be of the HUMAN RACE instead of the “I’m-better-than-you” race.
That’s ridiculous. Of course there are other treatments. For one thing- prednisone, to state the obvious. Cell crept, benlysta, and all the natural treatments most rhuematologists ignore. Hope you find a great treatment soon. Sorry you got a jerk. I’ve been there a few times.
If you’re interested in the list of alternative treatments suggested for lupus, let me know and I can email the 2 pages to you.
Hi I also have uncontrollable itching all over my body. I have seen 4 doctors none of them can help me. I am scratching my skin off. I am trying herbal remedies none have done anything for this. It is a deep itch under the skin. Any suggestions? I took prednisone, cortisone and every steroid cream available. Nothing stops it. I tried medical marijuana that just made me feel out of it. I am not currently on plaquinal so I know it’s not allergic reaction. Any suggestions I am going crazy and I am giving my self open wounds from scrscratching.
Thanks, angie.
Have you looked into food allergies Angie?
ANGIE Love said:
Hi I also have uncontrollable itching all over my body. I have seen 4 doctors none of them can help me. I am scratching my skin off. I am trying herbal remedies none have done anything for this. It is a deep itch under the skin. Any suggestions? I took prednisone, cortisone and every steroid cream available. Nothing stops it. I tried medical marijuana that just made me feel out of it. I am not currently on plaquinal so I know it’s not allergic reaction. Any suggestions I am going crazy and I am giving my self open wounds from scrscratching.
Thanks, angie.