The original version of this page can be found at : http://www.healingwell.com/community/default.aspx?f=29&m=3812113
Posted By : GweniePooh - 3/16/2017 10:04 PM
Discontinuing Plaquenil . . . any other options?

Hello everyone! I'm so glad I found this site. Thanks for being here. I'm a "Newbie, so be patient with me."

I was just informed that I need to go off my Plaquenil after 25+ years of use due to vision impact. A little scary but I'm processing this "wake-up."

I am searching for information on alternatives to Plaquenil. I'm anxious to explore the options and to discuss them with my Rhuemie.

Also I have seen several comments related to sunscreen and sun exposure. I'm sharing my experience with sun protection in case you're interested. I have terrible reactions to the sun. It feels like my skin is sizzling in a frypan. I found a great company that sells both clothing & accessories that are made of fabrics which block 95+% of uva & uvb and sunscreen lotions & sprays. Their selection of sunscreens have highest spf's i have seen anywhere. The company is Coolibar and if your interested in checking them out, they're at: www.coolibar.com
There are a couple of other similar companies but I found this one to be my preference. I wear light jacket, long pants, hats and sunscreen to go out. I used a UV blocking umbrella also.

In California, we have a motor vehicle regulation that with a doctors prescription we can used sunblocking screens on the window with the exception of the drivers window and use this also.
The sun issues are miserable and I hope you find the tools you need to protect yourselves.

Thanks again for being here, I appreciate each of you and all the information you have to share. Be good to yourselves always. GweniePooh

Posted By : kelsey.dossa - 3/16/2017 10:29 PM
there are alot of alternatives, some that i have heard of (but not personally used) are
methotrexate, rituxan, aralen and cimzia. I hope whatever new treatment you go on next smile

Posted By : GweniePooh - 3/16/2017 10:34 PM
ThanksKelsey. I appreciate your feedback. I'm making a list to share with my Rhuemie.

Looks like we are both "newbies".

Wishing you well always.

Posted By : Lynnwood - 3/17/2017 9:36 AM
Is your Lupus still active? What other medications have you been on, or are you on? There are various other medications used for Lupus, but Plaquenil and it's generic versions are the only ones that are "disease inhibiting". If your Lupus is not active you may not need anything... I was able to discontinue Plaquenil after my ANA went negative and all my inflammation markers & SED rate (as well as symptoms) showed my Lupus was "quiet".

The others are used to knock down inflammation or flares, here in no particular order: Prednisone, Imuran, Cellcept, MTX, Benylsta...

"Making a list to share with my rheumy"... that statement bothers me, perhaps it shouldn't. I certainly hope my rheumy KNOWS what other medications are available, if not, I might consider using another rheumy who is more up-to-date.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : GweniePooh - 3/17/2017 1:09 PM
At present my Lupus is calm but not all related tests are negative.

My history of Lupus type issues goes back to my early childhood however I wasn't diagnosed until 25+ years ago. I am currently on the following meds: prednisone, Plaquenil (waiting for appt re Opthmalogists findings), Gabapentin, Arava, Arnuity,clbetasol, Escitalopram, Fentanyl, Lorazapram, Nitrostat, Pantoprazole, Pilocarpine, Xarelto.
In the past I've used CellCept, Benlysta, Methotrexate, Enbrel.

I've developed many of Lupus' cousins over the years (Lupus Nephritis, RA, Fibromyalgia, etc.) and have experienced multiple hospitalizations the worst of which was for multiple blockages due to clotting and spent a month in a drug induced coma while they dealt with the clots and early stage necrosis. I have dealt with several episodes of Pulmonary Embolisms.

My Rhuemie is exceptional, young, energetic and very up-to-date on current practices and therapies. The information I referenced was for myself as to better understand any potential recommendations she might recommend. I suppose the manner in which I stated this was misleading. My apologies.

I am always looking for resources on Lupus and related therapies. I'm a firm believer in knowledge is power and feel researching Lupus related information gives me the power over this devastating disease.

Best wishes and look forward to learning from everyone on Healing Well.

Posted By : Ibrahim - 3/20/2017 11:41 AM
Hello, people. I have had lupus since 2008 and now in 2017, I am 22 years old. I am male.

Let me tell you my story.

I got lupus during my 8th-grade year. 2008.

Few things have happened in my life. please read all of this.

During 2009 I was a freshman in high school, my p.e teacher told me to go out and run a mile with the class, I was embarrassed, so I went and did it. The day was sunny and hot. after I ran my mile, I went back inside the school bathroom, I looked in the mirror and I WAS SO DARK it is 2017, my face has brightened up a little since that time, but my arms not so much.

During 2010, I played in an outdoor basketball tournament. This day was also hot and sunny, the day after this, my urine was brown/reddish. We automatically went to the doctor, and I flared. So I slept a few days in the hospital. This flare messed up my kidneys and I needed chemotherapy. I took cytotoxin. for 2 years. 16 times within the 2 years.

After this, my lupus has been stable. But what I did since 2010 is

-STAY AWAY FROM THE SUN
-TAKE SOME PURE IODINE.(HELPS WITH THYROID)
-EAT RAW HONEY
-AND DRINK ZAM ZAM WATER(BEST WATER ON EARTH) https://www.youtube.com/watch?v=s3DxELxeSLk
-EAT/DRINK ALKALINE THINGS
-THE MAIN CAUSE OF SICKNESS IS ACIDITY IN THE BODY. MAKE SURE YOU STAY AWAY FROM PEPSI AND ALL JUNK FOOD. EAT AND DRINK ALKALINE THINGS.
-I PLAY BASKETBALL ALL THE TIME, SO MAKE SURE YOU EXCERSISE.
- AND FINALLY ... MAKE SURE YOU SLEEP WELL!!! NO MATTER WHAT SLEEP WELL!!!

AFTER DOING THIS:
-MY LABS HAVE BEEN STABLE, AND SOMETIMES THEY SAY THAT IT DOESNT LOOK LIKE I HAVE LUPUS.
-STILL, NEED SOME WAY TO RETURN MY SKIN TO THE WAY IT WAS BEFORE.
-FEEL HEALTHY.


SAVE THIS THREAD, AND LET ME KNOW WHAT YOUR RESULTS ARE. HOPE YOU ARE ALL WELL.

Posted By : Mojo1950 - 4/1/2017 10:29 AM
Just a note:

Cellcept caused my blood platelets to go drastically low... norms should be around 240 to 245, mine bottomed out at 40 total.

Caused a scare of cancer, but a bone marrow biopsy proved to be clear of any cancers. My doctor discontinued use & placed me on amitriptyline at 50mg. A drug normally used for fibromyalgia. My last appointment, he also added Celebrex.

I am leary of using this drug due to my chronic kidney disease. I only have one & would hate to destroy it due to Lupus treatment.

Has anyone been prescribed the 'newest drug' for Lupus approved by FDA since 1955? I believe it is called Benlysta? Just wondering if my doctor has even researched this subject as much as I have. Take control of your own wellness.

Posted By : Lynnwood - 4/1/2017 5:53 PM
We've had several members using Benlysta with varying amounts of success. Use the search option in the second blue bar from the top (to the right side of the bar), and search for Benlysta to see what others have posted about it.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer