Any suggestions...frustrated !

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Lorik
Regular Member


Date Joined Feb 2013
Total Posts : 23
   Posted 4/19/2013 3:34 PM (GMT -6)   
Sorry, but I truly need some guidance. After suffering flares about every two weeks my rheumy had wanted me to start Benlysta. Currently taking Placqunil , gabapentin, 20 mg daily prednisone , frolic acid, lortab, and mexotrexate. Also, just completed a three day iv infusion of prednisone and have been placed on short term disability due to extreme weakness, fatigue and pain.
Unfortunately, because I have a federal bcbs plan they will not cover it and I have contacted several agencies to see if any assistance was out there. Well, the answer. Was no due to my federal bcbs plan and second I don't qualify as proverty level.
The financial mgr at drs office suggested that I talk to my dr about other options and that's what I'm hoping I might get from this site. She stated it would just be way too expensive even to do co-pays and I would be looking at approx ten thousand from now to. Aug...first three ivs are done in one month alone....
I would appreciate any advise/suggestions of other meds/avenues I might be able to bring to the table with my dr.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 4/19/2013 4:20 PM (GMT -6)   
I've heard of cellcept, imuran, humera....

Benlysta is the big guns. Others here have tried it and quit it because it wasn't working for them or the side effects were too rough.

I hope one of them can help you.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Lorik
Regular Member


Date Joined Feb 2013
Total Posts : 23
   Posted 4/19/2013 4:35 PM (GMT -6)   
Thanks Joy!,
Yeah, I also heard several people had no good results.
I will run these names by my physician and hopefully we can come up with some other form of treatment..
Dx with Lupus Feb 2012, Antiphospholipid Syndrome, Lupus Anticoagulant , Fibromyalgia , DDD

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 4/20/2013 12:24 PM (GMT -6)   
Hi Lorik. I was a federal employee and am now on full disability. I've kept my bcbs even when, after 2 years, Medicare became mandatory. So Medicare is my primary, bcbs secondary and Benlysta infusions were covered 100%. Benlysta gave me extreme fatigue, just the opposite of what it was supposed to do. I held on for 6 infusions. 
 
There are other oral medications that you should try before iv anything. I'm pretty sure most rheumys try Imuran after methotrexate, then stronger oral meds like Cellcept, which is actually a transplant rejection drug. Some lupies get injections of other medications. I haven't tried that yet. The best drug for me to date is Cellcept. I took it 2 years, stopped 6 months, went back on it and still take it. The first time I took Cellcept  it was really great. My cognitive function improved dramatically and it also helped with fatigue. Currently I'm on a lower dosage than when I first tried it and on my next rheumy visit I'm going to ask for a change.
 
One thing to keep in mind is that you have other oral meds to try. Some are a great improvement for a while, then you have to try something else. For lots of lupies (including me) their life is a constant change of meds. I really hope you find medications that help you. Soon! Love, Butterflake
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Lorik
Regular Member


Date Joined Feb 2013
Total Posts : 23
   Posted 4/20/2013 3:05 PM (GMT -6)   
Thank you Butterflake for your response. I will definitely talk to my dr about other Oral meds. I totally agree with you about taking oral as opposed to IV meds. It just becomes so darn frustrating not to be able to feel somewhat human. Not being able to do simple things or just fun things cause I'm just so exhausted or I hurt so bad I can't never walk short distances.
Joy also mentioned Cellcept so I believe I will approach dr about that. What are if any side effects did you experience?
I am very appreciative of all feedback just don't know where else to turn! confused confused

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 4/21/2013 1:03 AM (GMT -6)   
I'm one of the folks that recently stopped Benylsta, I did it for six months and it did nothing for me. I agree with Donna there are other meds to try prior to the IV stuff.

Trust me I know, as I now have taken every drug offered to treat lupus except Gold Injections. My Dr is planning on putting me back on injectable methotrexate sometime soon I hope.

I'm sorry that you are flaring so much, I live in a constant flare have for years. I've been on high dose steroids for almost 12 years now. The steroids have caused osteoporosis so bad that I'm breaking ribs w/o doing anything to them like falling or injury of some sort.

I've been on Cellcept too, I really didn't have any side effects from the drug, but it didn't do anything for me. The drug that worked best for me was cytoxan but that's a heavy duty chemo drug that's given IV. I can no longer take it as its looking like my bone marrow is changing and I'm headed towards full blown cancer.

I hope that your Dr gets you on the correct meds and you begin to feel better really soon.

Hugs,
Barbara

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 4/21/2013 11:17 AM (GMT -6)   
 
 
I am another person who stopped Benlysta.  It was not doing what it was supposed to do.  Was great in the beginning, but then it did not hold me for the entire month.  I am back on Prednisone (not my first choice), but it does work quite well for me.  I did try Cell Cept, and it was wonderful.....but I had big problems with my white counts, so they discontinued it.  Benlysta was very expensive.  Even with insurance, my co-pays were huge.  I would definitely try other meds first before heading in that direction.
 
Laura

Lorik
Regular Member


Date Joined Feb 2013
Total Posts : 23
   Posted 4/21/2013 12:38 PM (GMT -6)   
Barbara I know you have really ran the mill being in and out of hospitals, trying all different roads to get relief...my prayers go out to you.
From the census I have gotten Benlysta is not all its cracked up to be and the majority don't have lasting results in a positive way, so the choice is trying to find the right oral meds to keep me on track.
Just truly wish I could get some relief!
Oreo- other than WBC did you suffer any other effects from Cellcept? My dr wrote me out on disability for month (initially he was gonna do three but I said one and will see how I felt, unfortunately nothing has changed andi was hoping to beable to try something else quick while I was still home.

Thank you ladies for all the support and advice . Wish I could wave a magic wand to make us all feel well again:-)
Dx with Lupus Feb 2012, Antiphospholipid Syndrome, Lupus Anticoagulant , Fibromyalgia , DDD

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 4/21/2013 3:26 PM (GMT -6)   
I took Cellcept for about 18 months -- no side effects at all and really squashed my Lupus well. I'd had major cognitive issues and Cellcept gave me back my brain!!

Imuran, Cellcept and MTX are the 3 they usually try first. Imuran did nothing for me (and no side effects), then Cellcept worked great and I didn't have to try MTX. Lupus acts differently for everyone, just have to try & see what works for you.

Best wishes
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 4/21/2013 8:31 PM (GMT -6)   
 
 
 
Nope, the only side effect that I had with Cell Cept was really low white counts.  I tolerated it very well and it was having a positive affect on my Lupus.  I was bummed when I had to stop!!!
 
Laura
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, September 24, 2018 10:15 AM (GMT -6)
There are a total of 3,006,050 posts in 329,296 threads.
View Active Threads


Who's Online
This forum has 161820 registered members. Please welcome our newest member, Dogsitter2.
341 Guest(s), 7 Registered Member(s) are currently online.  Details
borrelioburgdorferii, NicHostetler, Michelejc, JoHnGaMeR90, HeartsinPain, Alex ArmPain, iPoop