I’ve been on all of the above and yet nothing seems to work without miserable side effects. The Benlysta made me vomit, the steroids, well, we all know how bad they are, and I’ve been on plaquenil seemingly forever. I finally stopped the Benlysta treatments. I want to decrease my intake of prednisone, but I don’t know how I’d function without it. But, the weight gain alone has been depressing. I’ve been with the same rheumatologist for over a decade. Perhaps it’s time to find someone else. I don’t know what to do. My friends and husband have seen my side effects to these medications and they can’t believe how different I’ve become over the last, mainly, ten years. Everyone wants me to do something proactive. I’m just at a loss for what to do next. I don’t want to give in to this insidious disease, and the half dozen other “overlapping” syndromes I have going on. I’m so frustrated. I have a 7-year old who needs me. I’m at a loss for what to do. Thanks for listening.
I’ve been on steroids for 23 years along with Plaquenil and muscle relaxers and tramadol for pain and methotrexate too. Yes I gained some weight on steroids but I got to raise my daughter and didn’t have to quit working till 2 years ago. Without the meds I would have been bedridden. Plus they kept lupus out of my organs till just recently. To me, all of those are pluses over any side effects. Now I’m going to start Benlysta soon to hopefully reduce the steroids. I will probably vomit from that too like I did on Plaquenil. It depends how bad your lupus is. if you’re on a low dose of prednisone and have no organ involvement have doc try tapering you down really slow. If you get worse then stay on the pred. I know the weight gain is depressing, but now with other problems I can barely eat so I consider those years I got to work and raise my daughter priceless regardless of weight gain. I always advocate that you know your body best and if you feel you need another doctor then by all means go and get one. Your body will let you know If you’re doing the right thing. I wish you best of luck and advise you to do what it takes to watch your 7 year old grow up. Much love, Sheri
Hi Kim, reading your post I realized it feel like you read my mind. I just got my 9th Benlysta treatment yesterday, I’m on steroids, plaquenil, and a blood pressure med. I also take a lot of ibuprofen and hydrocodeine for pain. After the Benlysta I have two bad days and about 3 weeks of relief if I’m lucky. I also have a 6 y/o that that is starting become very familiar with lupus. I am also at a loss as to what is next. Do I live my life 3 weeks at a time?
I've been on everything, too, and nothing worked for me. All of the meds are toxic to my liver and kidneys and I can't get off of prednisone no matter what we try. My rheumo had high hopes for Benlysta, since I'm his most serious SLE patient, and it killed me. Right now, we just started injectible methotrexate and it is already making me sick. We did the pill form several times and I couldn't tolerate it because of the side effects. I've tried Enbrel and Cytoxan infusions as a test and they made me sick, too. My rhemo refuses to give up and has experimented with all kinds of meds on me. None of the "standard" SLE meds work, except for prednisone, but the side effects have done horrible things to my body. Anyway, the Benlysta gave me a sepsis infection that put me in ICU last April, a year ago, and my lungs gave out. They put me on life support and then I had to go through rehab to learn to walk and talk, etc. I had to take a disability retirement at 44 and now I'm 50. I never thought my life would be like this, but I'm refusing to give up. Mentally, I'm toast...physically, I'm worse, but each day that I can wake up and get out of bed is a miracle for me. Enjoy your 7 year old and take each day as it comes...one day at a time. There are two new meds that are in trials right now so we have to patient for a while longer. HUGS! Lori
Oh you poor thing. Sounds like uv had enough. I am ill almost every day i just get an odd good day. Ive just started hydroxychloroquine n at the moment dont feel sick on it. Ive great hope for it in a few months. I didnt plan my life to be like this either but my friend just got breast cancer and i think thats a lot worse than sle. Im now 55 n registered disabled and have been ill for years but dont give up you can fight it. Ve positive and strong. Good luck x
I can't say now what, because for me, it's all that and more.
You are not going to stop lupus. There is no all better and there is no going back. You can slow it down, you can help your body fight. And that means meds, lots of them, in lots of combos. Benlysta can suck, I have been on it for 16 months. But its spaced out my flares and my organs look great. Same with Plaquenil. Prednisone is just a fact of life, I can get my dose down, but stopping really isn't an option.
This is a awful disease and there are not enough drugs or treatments. We do what we can just to get by. I get it, I have 2 kids, both with special needs.
I am so sorry that we all have SLE....but what I do know is that when I am down....and I may be down 3 weeks out of a month...but I may be up that 1 week ...that you better get out of my way because I got alot of living to do....I have done this now since 1985...since ITP... and SLE....I do not take prednisone....I had enough of the effects with ITP....I choose never to take it again...I had a spleendectomy....now I have other diseases with lupus...BUT....you have to find what is best for you.....I finally had to get disabled because of the blood clots to the lungs and strokes/TIA's I was having from SLE....in 2010.....I had one great employer....
I wish no one was ill...my friend also got breast cancer....why....we just have to go on.....Be strong....and on good days...go flying.....
hugs....B
My daughter grew up becoming my nurse voluntarily at 6 years old. Hubby at that time was no help. If you have to live 3 weeks at a time,then do it. it’s way better than no weeks at all. The disease affects us all differently so our luck with treatments will vary as well. listen to your body! You can do this! NEVER GIVE up! Sheri
DH and I do not have children since I had to have a complete hysterectomy. I'm basically on my own. DH tries, but he just doesn't get it most of the time. I checked myself into a psych hospital back on June 15 to get some relief from everything. It was a horrible experience, but it got the point across that I can't worry about everything and need to take care of ME for a change! I'm not the same person after that experience and I refuse to take on everyone else's problems....I'm fighting my own fight every single day. Love to all!
Wow! Sorry that you are going through this matter! Do what you think is best for yourself ! Hope that everything works out for you…Beverly L.
I HAVE SLE, MCTD, LUNG DISEASE, FIBROMYALGIA AND 2 OTHER DISEASES SO I FEEL YOUR PAIN. SLE HAS EFFECT MY SKIN, KIDNEYS,HEART AND LUNGS. WHILE IVE NEVER HAD BENLYSTA, IM ON 26+ MEDS SO I UNDERSTAND WHAT YOU MEAN BY SIDE EFFECTS. I TAKE ALL THESE MEDICATIONS EVERY DAY AND DO NOT FEEL BETTER. IM NOW FIGHTING FOR SSD. I HAVE A ENERGETIC 2 YEAR OLD WHO HAS JUST BEEN DIAGNOSED WITH AUTISM SPECTRUM DISORDER. IN MY HEART I BELIEVE THAT ITS MY FAULT, THAT MY ILLNESS AND HIGH RISK PREGNACY CAUSED HIM TO BE SPECIAL NEEDS. I HAVE BEEN WITH MY RHEMO FOR 8 YEARS NOW. I LOVE HER, SHE LISTENS TO ME BUT LIKE I SAID IM ON 26+ MEDS. I THINK THATS TO MUCH FOR ANY PERSON!!! ESPECIALLY SINCE I FEEL AWFUL AFTER TAKING THEM ALL. I USE A FENTENYL PAIN PATCH ON TOP OF DILLUIDID FOR PAIN AND I'M STILL IN PAIN. IM GLAD IM NOT ALONE, YOU GUYS UNDERSTAND WHILE THOSE CLOSEST TO ME DONT FULLY GRASP IT. I NOW NEED A DOUBLE LUNG TRANSPLANT BECAUSE OF THIS DISEASE BUT I REFUSE TO LET FEAR GET IN MY WAY. I JUST WANT TO BE DONE AND OVER WITH.
Hi, everyone! I am so grateful for all the feedback. Sometimes, just knowing I’m not alone in this struggle gives me more determination to keep fighting for what’s going to work for me. I really appreciate the time you took to read my post and reply. I hate to complain because I know some of you have it worse. But, people in general don’t seem to be knowledgable about lupus. So, it’s nice to be part of a like-minded community. I’m equally concerned with those of you who continue to struggle as I do. I try to stay positive. But, sometimes I feel I simply need to vent. Thank you all, again, for your caring replies. You just never know when your empathy can make someone’s day. 
My very sincere & 'bestest' wishes go out to you. Love your attitude too! Kaz xo
loriken214 said:
I've been on everything, too, and nothing worked for me. All of the meds are toxic to my liver and kidneys and I can't get off of prednisone no matter what we try. My rheumo had high hopes for Benlysta, since I'm his most serious SLE patient, and it killed me. Right now, we just started injectible methotrexate and it is already making me sick. We did the pill form several times and I couldn't tolerate it because of the side effects. I've tried Enbrel and Cytoxan infusions as a test and they made me sick, too. My rhemo refuses to give up and has experimented with all kinds of meds on me. None of the "standard" SLE meds work, except for prednisone, but the side effects have done horrible things to my body. Anyway, the Benlysta gave me a sepsis infection that put me in ICU last April, a year ago, and my lungs gave out. They put me on life support and then I had to go through rehab to learn to walk and talk, etc. I had to take a disability retirement at 44 and now I'm 50. I never thought my life would be like this, but I'm refusing to give up. Mentally, I'm toast...physically, I'm worse, but each day that I can wake up and get out of bed is a miracle for me. Enjoy your 7 year old and take each day as it comes...one day at a time. There are two new meds that are in trials right now so we have to patient for a while longer. HUGS! Lori
Hi,Kim
I have had sle since 1991 I have been on the high doses of prednisone then would go down to 5mg a day which I did for a long time but could never go below that ,but in 2006 it started to effect my kidneys so went on 60mg a day and I got one Cytoxan infusion ended up with a lung infection a bad one and had ruptured both tendons in both knees. while going through all this my rheumo at the time sent me to the Cleveland clinic for a second opinion my doctor from there put me on a drug called cellcept and took me of the prednisone very slow and that worked for me I got off the prednisone and have been doing good. I don't know if they use cellcept if there is no kidney problems or not, I do know my doc said if it didn't work I would have to do the cytoxon again. It never hurts to get a second opinion and please don't give up, I know it can be really hard. my daughter was 3 when I found out I had sle My family helped a lot I thank God for them. There was a lot of hard days. I wish you the best.
hugs Sandy
Hi, my doctor has told me the i should never come off prednisone, just take a half of the pill (break it in half) , which i did try that but the response did not work for me , so every other day i take a whole pill, which i think works best for me ....Beverly L.
Good luck...
Hearing from everyone really puts things in perspective. I think I have had a pretty tough time of it. But, some of you have had it worse. You’re all in my prayers. Thank you for your continued feedback.