Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

Checking in, it's been awhile

Support Forums
>
Lupus
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
profile picture
dbab
Veteran Member
Joined : Jan 2004
Posts : 4151
Posted 4/22/2013 5:01 PM (GMT -8)
Hey everyone, I haven't been here in forever (not sure if anyone remembers me)... I hope everyone is doing well.

I'm doing ok I guess, waiting for the one day when I feel good again (and still holding out hope). I'm currently on 2000 mg of Cellcept a day, Plaquenil, Pred, and Methotrexate weekly and YES that is a lot. My doc wants me to consider Benlysta but I'm just really scared at this point.

I had an appt today and she gave me a Depo Medrol steroid shot and some samples of Rayos which is a slow release form of prednisone. Is anyone taking this? I won't start this until my shot starts to wear off but curious if anyone had any experience with it. I'm mostly concerned because the directions and my doc said you take it at night, and I'm of course worried that it would keep you up since normally you take Pred in the morning.

Any input would be appreciated. :)
profile picture
oreo11
Regular Member
Joined : Feb 2011
Posts : 399
Posted 4/22/2013 6:31 PM (GMT -8)
 

Hi,

      I have never heard of Rayos, but I am interested in learning more.  I was on Benlysta and went off of it after 8 treatments.  Several people on this site have had experience with it.  I had no side effects.  It just did not do what  it was suppose to do....worked well for about 3 months and then poof!

Laura

profile picture
couchtater
Elite Member
Joined : Jul 2009
Posts : 14475
Posted 4/22/2013 9:01 PM (GMT -8)
I haven't heard of Rayos.
Frankly, I'm scared of the Benlysta. I'm saving it as a last resort.
profile picture
Lorik
Regular Member
Joined : Feb 2013
Posts : 23
Posted 4/23/2013 4:17 AM (GMT -8)
Dbab,

I'm currently on the same meds except for CellCept which is the next med I believe I will be adding to my daily regiment. Dr had wanted me to start Benlysta but the payments are extreme and the census I have gathered is it doesn't last or doesn't work at all. Like you I'm just looking for SOMETHING to make me able just to feel somewhat normal to get thru a day.
I have not heard of Rayos but am very interested to learn more. Pls post how you do with the med since it might help others.
cool
✚ New Topic ✚ Reply


More On Lupus

Chronic Pain In Lupus

Chronic Pain In Lupus

Complementary Therapy For Lupus, Part II

Complementary Therapy For Lupus, Part II


HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
Facebook Twitter Instagram Pinterest LinkedIn
© 1997-2023 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.