Author: Sorting Last Post on Top ↓ Message:
CAPISTRANO's Photo CAPISTRANO Posts: 3,393
11/9/11 2:07 P

My SparkPage
Send Private Message
Reply
Hello and welcome.
Thanks for posting about your experience with this new med. Is an infusion an IV? I didn't realise it was administered that way. Sounds like it takes up a lot of time. I had read before it takes a long time to see any benefits. What are you taking in the meantime until you see results? Don't know if I would like those side effects...headaches, insomnia and hot flashes as I have been getting migraines lately and having a hard time sleeping. I had hot flashes when I went thru menopause...don't want those again, thankyou!

Please keep us posted on your results, I find it interesting!

And welcome to the team! emoticon

Cathy


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


 current weight: 223.0 
 
260
237.5
215
192.5
170
EVANSBC's Photo EVANSBC Posts: 1
11/9/11 9:23 A

My SparkPage
Send Private Message
Reply
hi everyone, this is my first time posting in the forum...

i'm on benlysta and i've had 3 infusions thus far. the first 3 were 2 weeks apart, and every infusion after is monthly. they last about an hour with a 30 minute observation period. but quite honestly by the time everything is set up and medication is mixed, it's a 3 hour ordeal.

the first infusion left me tired and a little nauseous. i felt nothing after the second. during the third, i had a reaction when my throat began to close. i was immediately injected with benadryl, and everything was fine.

i've noticed an increase in headaches, some insomnia, and hot flashes (which isn't so bad for someone who's cold 24/7). benlysta is a slow-working drug and you really can't expect to see improvement for about 12 months of continuous use. i qualified for the medication becuase my disease is moderate, continuously active, and other drugs aren't working. benlysta treatment precludes those who have mild disease and those with organ involvement.

I'm nervous about long term side effects, as benlysta hasn't been studied nearly long enough to quash my concerns. I remain hopeful though...

BACKMOON's Photo BACKMOON Posts: 8,022
6/8/11 10:57 A

My SparkPage
Send Private Message
Reply
I asked my Dr. about it and he said it was only available to patients with a certain criteria. I didn't qualify for it. I'm not sure if that's a good thing or a bad thing.

You have come to far to be controlled by a cookie!
Life is God's gift to you. What you chose to do with your life is your gift to God.
Three things I believe in and would die for:
My God,
My Family,
My Country.
Leader
TOPS MEMBERS
Co leader
Sparks with Lupus

www.flickr.com/photos/backmoon/


 current weight: 194.6 
 
212
200.25
188.5
176.75
165
CAPISTRANO's Photo CAPISTRANO Posts: 3,393
6/7/11 9:08 P

My SparkPage
Send Private Message
Reply
It's been a few months since I last posted in here. Has anyone tried the new lupus med yet? Would like to hear about how well it works, side effects etc...

emoticon


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


 current weight: 223.0 
 
260
237.5
215
192.5
170
CAPISTRANO's Photo CAPISTRANO Posts: 3,393
4/30/11 8:32 A

My SparkPage
Send Private Message
Reply
Has anyone tried the new Lupus drug?

My cousins wife has been very sick, in and out of the hospital a lot. Her docs may try her on the new drug but they told her it takes about a year to feel the full benefits!


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


 current weight: 223.0 
 
260
237.5
215
192.5
170
MSKIPPER43's Photo MSKIPPER43 SparkPoints: (0)
Fitness Minutes: (165)
Posts: 69
2/26/11 1:10 P

My SparkPage
Send Private Message
Reply
I just noticed your tracker. CONGRADULATIONS!!!!!

Genetics may load the gun but environment pulls the trigger.

Pamela Peeke


 Pounds lost: 9.4 
 
0
14.25
28.5
42.75
57
BACKMOON's Photo BACKMOON Posts: 8,022
2/26/11 1:24 A

My SparkPage
Send Private Message
Reply
I wonder if the article she read was from Dr. Dubuois from UCLA. In the early 70's, which is when I was diagnosed, was the leading specialist on Lupus at the time. He was involved in my treatment and they did a lot tests and took pictures of the different problems I had for articles and research. I also got to be subject of a lot of young med students.

Rick

You have come to far to be controlled by a cookie!
Life is God's gift to you. What you chose to do with your life is your gift to God.
Three things I believe in and would die for:
My God,
My Family,
My Country.
Leader
TOPS MEMBERS
Co leader
Sparks with Lupus

www.flickr.com/photos/backmoon/


 current weight: 194.6 
 
212
200.25
188.5
176.75
165
MSKIPPER43's Photo MSKIPPER43 SparkPoints: (0)
Fitness Minutes: (165)
Posts: 69
2/25/11 4:27 P

My SparkPage
Send Private Message
Reply
I agree with you Cap, back when we were diagnosed people were getting very sick. Th woman who mentored me when I was first diagnosed said sh had it for 10 yrs and they started sending her to psychiatrist because hey thouht she was crazy. She read an article from Cali and they were the ones who diagnosed her. She lived for many years after this but because it had invaded her organs she had many health issues and ended up dying of many organ failure. I am very leery about trying something new I usual go and read research from te www.lupus.org site or go to the Mayo Clinic site.

Genetics may load the gun but environment pulls the trigger.

Pamela Peeke


 Pounds lost: 9.4 
 
0
14.25
28.5
42.75
57
CAPISTRANO's Photo CAPISTRANO Posts: 3,393
12/5/10 10:03 A

My SparkPage
Send Private Message
Reply
Thanks for the info Rick! All signed up!

How uncaring some docs can be. They don't think about what they are saying and how it effects their patients. After he said that to me, he turned and walked away and left me standing in the outpatient dept alone. I don't even know how I drove home that day.


Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


 current weight: 223.0 
 
260
237.5
215
192.5
170
BACKMOON's Photo BACKMOON Posts: 8,022
12/1/10 2:29 P

My SparkPage
Send Private Message
Reply
boy Cathy, That statement from your Dr. Must have been a standard reply back then. one of my docs made almost the exact same statement.
You can go to www.Lupus.org for the information.

You have come to far to be controlled by a cookie!
Life is God's gift to you. What you chose to do with your life is your gift to God.
Three things I believe in and would die for:
My God,
My Family,
My Country.
Leader
TOPS MEMBERS
Co leader
Sparks with Lupus

www.flickr.com/photos/backmoon/


 current weight: 194.6 
 
212
200.25
188.5
176.75
165
CAPISTRANO's Photo CAPISTRANO Posts: 3,393
12/1/10 12:49 P

My SparkPage
Send Private Message
Reply
Yes, I agree it is a big step forward. When I was first diagnosed 23 years ago, the doc in outpatient who broke the news to me was such an uncaring jerk. "You have Lupus but if you learn to take care of yourself, you may live for another 10 years!"

And if its a drug that suppresses the immune system, I would be very hesitant to try it. I've seen what my DH and brother went through with those kinds of drugs. Because your immune system is suppressed, you can more easily pick up infections, and in both cases, it was cellulitis. My brother almost died.

What web site can I sign up for the Lupus newsletter?




Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


 current weight: 223.0 
 
260
237.5
215
192.5
170
BACKMOON's Photo BACKMOON Posts: 8,022
12/1/10 8:25 A

My SparkPage
Send Private Message
Reply
I do agree with what everyone is saying, but the important thing is, it's a step forward! It is the first advancement in medication for Lupus sufferers in decades! When I was first diagnosed over thirty years ago, I was under the impression my future was pretty grim. But even after almost dying four times now, I'm still here. And if this new med can help some people get off steroids and other meds that have bad side effects(Which by the way is where a lot of my problems stem from)Then I say here here and applaud them and can't help but be excited about it. and that is not to say I am not apprehensive because I have certainly tried my share of meds that have not done what they have hoped. So for now,all we can do is wait and hope it is what they hope it to be.

Rick

BTW Deni, I do get the Lupus newsletter it's a great source of info. and I am part of two different studies(I'm a lab rat I guess) for the Lupus foundation thru UCSF.

You have come to far to be controlled by a cookie!
Life is God's gift to you. What you chose to do with your life is your gift to God.
Three things I believe in and would die for:
My God,
My Family,
My Country.
Leader
TOPS MEMBERS
Co leader
Sparks with Lupus

www.flickr.com/photos/backmoon/


 current weight: 194.6 
 
212
200.25
188.5
176.75
165
DENIPARKER Posts: 1,084
12/1/10 5:45 A

My SparkPage
Send Private Message
Reply
Thanks for the info Rick. I've been reading about this in this months Lupus Newsletter. Do you know you can get the newsletter by e mail now? I'm not sure about this new drug. Does anyone know how it works? Does it supress the immune system? These drugs seem to make me feel worse. Must get worse before you get better?

Thats all for now, Deni emoticon

 current weight: 219.0 
 
280
247.5
215
182.5
150
DJ4HEALTH's Photo DJ4HEALTH Posts: 39,595
11/30/10 10:37 P

My SparkPage
Send Private Message
Reply
I agree that only 30% of the people it helped and with all of my allergies I would be very concerned about taking it.

Dorothy





 current weight: 224.0 
 
274
235.5
197
158.5
120
CAPISTRANO's Photo CAPISTRANO Posts: 3,393
11/30/10 2:09 P

My SparkPage
Send Private Message
Reply
Thanks Rick!
It sounds good but is only effective in about 30% of people. Not sure if I want to try it right away. It always seems like they find bad side effects on new drugs after being released to the public.



Other Resource: Peace is to be found only within, and unless one finds it there he will never find it at all. Peace lies not in the external world. It lies within one's own soul.


 current weight: 223.0 
 
260
237.5
215
192.5
170
BACKMOON's Photo BACKMOON Posts: 8,022
11/30/10 11:09 A

My SparkPage
Send Private Message
Reply
Have you heard about the new Lupus drug Benlysta?
Check out the link below. Good news and bad.

Rick

www.washingtonpost.com/wp-dyn/conten
t/
article/2010/11/18/AR2010111802313.html


You have come to far to be controlled by a cookie!
Life is God's gift to you. What you chose to do with your life is your gift to God.
Three things I believe in and would die for:
My God,
My Family,
My Country.
Leader
TOPS MEMBERS
Co leader
Sparks with Lupus

www.flickr.com/photos/backmoon/


 current weight: 194.6 
 
212
200.25
188.5
176.75
165
Page: 1 of (1)  

Report Innappropriate Post

Other Sparks with Lupus General Team Discussion Forum Posts

Topics: Last Post:
things will be ok! 1/16/2014 8:07:53 AM
FEELIng so much better!! 1/1/2014 7:36:11 AM
Chronic infections/when do you take your plaquenil 1/24/2014 12:25:56 PM
Plaquinel 11/1/2013 12:42:12 PM
Meds are working and I'm feeling so much better 6/15/2014 11:07:04 AM

Thread URL: http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x4305x38201305

Review our Community Guidelines