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View Full Version : new here but was considering Benlysta



thepaynes
01-07-2012, 01:27 AM
hi everyone. im new here. i have had sle since 16 and im now 32. i would say the lupus is moderately under control.i seems to be attacking my skin not vital organs. praise God. i have been on prednisone since 16 also. i have moon face butterfly rash and rash all over my body aches and pains galore sometimes feeling like im 90. my rheum dr tried to reduce my prednisone and resulted in my skin breaking down and opening up into about 100 open body ulcers. it was horrible. took months to heal. only by raising the prednisone,calmoseptine,(zinc oxide) tegederm, my husband, ,home nursing and lots of prayer did they heal. sometimes they still try to come back but i know what to do now.Prednisone is a blessing and a curse.it knocks out flareups but causes diabetes, weight gain, fatty deposits, osteoporosis,glaucoma, moon face(did i miss any). but now my rheum wants me to try Benlysta. but im afraid. Benlysta provides an increased risk of cancer.i have cancer in my family and had an abnormal pap test.and it also has a multitude of side effects but what drug doesnt. but the cancer issue scares me. has anyone found complete study results information of this drugs state and foreign studies.

i think i will let this drug marinate and get a little seasoned with a little bit more results. i just feel they pushed this drug too quick. i know everyone is different and has different reactions. but i just want to hear from people who have taken it. i have bad veins and would need a central port.

im interested in finding out about foods that cause pain and foods that help. i want to find out what foods might be hurting me. maybe it could lead to getting off some of my meds. by the way i take prednisone plaquenil nexium ibuprofen ultram lorazepam to help me sleep i get insomnia klor con(potassium) metoprolol vit d stool softener tylenol baclofen mag oxide (bad muscle cramps) eye drops and creams.

in addition to sle i have fibromyalgia, peripherial neuropathy, raynauds phenonomon, sjogrens syndrome but yet i push on. i was told to get my mind off myself and remember there is always someone worse off than you.

steve.b
01-07-2012, 02:39 AM
we have1 of our members that has been on benlysta a while.
they have started writting in a blog.
go to the blog section for more information.

Saysusie
01-07-2012, 07:59 AM
If, after reading the blog, you would still like more information, please let us know. We will be more than happy to research and/or provide personal experience in order to help you as much as we can.

Peace and Blessings
Namaste
Saysusie

tgal
01-07-2012, 03:03 PM
I will be happy to help you find information but I am not on it. I have no insurance and it is $35,000 a year without it so it is not an option for me.

thepaynes
02-08-2012, 11:24 PM
i have a number for anyone who needs help paying for benlysta. they were going to help me but i decided i wanted to let it get more seasoned before i try it. i heal slow n would need a central line port. plus n more importantly i have cancer in my family and an abnormal pap. IT DOESNT CAUSE CANCER BUT INCREASES THE RISK.

thepaynes
02-08-2012, 11:25 PM
do u know who or on which blog specifically? i will look around tho.

thepaynes
02-08-2012, 11:26 PM
i have a number for 2 companies that were willing to help me if ur interested.

rob
02-19-2012, 08:31 AM
do u know who or on which blog specifically? i will look around tho.

The WHL member with the Benlysta Blog goes by the username slim.

Here are links to the two blog entries made so far-

http://forum.wehavelupus.com/entry.php?379-Had-my-first-Benlysta-treatment

http://forum.wehavelupus.com/entry.php?381-Benlysta-round-2

tgal
02-19-2012, 11:05 AM
I just want to comment about the increase in cancer rates. Almost any drug that we take is going to have to carry that warning because to treat an AI disease the medicine must decrease our immune system. In doing so we are more susceptible to everything. We must also look at the percentage of people that got cancer in the the trials. If it is under 5% it is basically the same as that group would be without the meds but it must be reported.

I am not really talking about this med specifically I am just pointing out that, although we must be informed, we can't freak over all the warnings. We must weigh them with the benefits of each drug

Saysusie
02-20-2012, 09:08 PM
I just want to comment about the increase in cancer rates. Almost any drug that we take is going to have to carry that warning because to treat an AI disease the medicine must decrease our immune system. In doing so we are more susceptible to everything. We must also look at the percentage of people that got cancer in the the trials. If it is under 5% it is basically the same as that group would be without the meds but it must be reported.

I am not really talking about this med specifically I am just pointing out that, although we must be informed, we can't freak over all the warnings. We must weigh them with the benefits of each drug

Excellent points and great information. Thank you, so much, for posting this Tgal!

Peace and Blessings
Namaste
Saysusie

Adventure Racer
04-09-2012, 07:23 PM
I am on Benlysta, and have had 3 rounds so far.
pls feel free to message me if you'd like to talk about it. :)

FYI- the pharmaceutical company is helping me cover the extremely high co- insurance costs for the Benlysta.

tgal
04-09-2012, 07:53 PM
This is information tht I think the entire group could use. Please post information here if it is valid and not a solicitation

Adventure Racer
04-10-2012, 09:22 PM
I was able to get $7000 co-pay assistance from Benlysta. My doctor's office actually informed me of the Benlysta gateway program and filed all the paperwork for me. The $ can only be used for the medication itself. It cannot be used to pay for the administration of the meds.
From what my doctors office said, most everyone that applies for assistance gets it.
Benlysta also offers financial support for folks that are uninsured. Keep In mind that support is likely to be in terms of medication only. It still costs me a couple hundred $$ for the administration of the drugs.
You can go to the Benlysta website and search for gateway. It only mentions at a high level, but there is a number listed there you can call for additional info.
The gateway program also calls me before each infusion and answers any questions I may have.
Hope this helps.

tgal
04-10-2012, 09:31 PM
I was able to get $7000 co-pay assistance from Benlysta. My doctor's office actually informed me of the Benlysta gateway program and filed all the paperwork for me. The $ can only be used for the medication itself. It cannot be used to pay for the administration of the meds.
From what my doctors office said, most everyone that applies for assistance gets it.
Benlysta also offers financial support for folks that are uninsured. Keep In mind that support is likely to be in terms of medication only. It still costs me a couple hundred $$ for the administration of the drugs.
You can go to the Benlysta website and search for gateway. It only mentions at a high level, but there is a number listed there you can call for additional info.
The gateway program also calls me before each infusion and answers any questions I may have.
Hope this helps.

Wonderful information! Thank you!

rob
04-11-2012, 03:57 AM
Wonderful information! Thank you!

I'll second that.

Thanks Adventure Racer!