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05/06/2011 04:46 PM

Updates - skin biopsy, benlysta, etc.

AustinLisa
AustinLisaPosts: 110
Member

Hi Everyone! I thought I should give an update on my face biopsy, etc. I got the preliminary results back and they found cutaneous lupus and a little mild rosacea. The tests for vitiligo take longer, so no results yet.

I've had a bad week feeling really sick and having issues with my pericarditis. I went in for my infusion today and to see my Rheumatologist, and had a fever of 100.2. I was afraid they wouldn't let me do my infusion, but I convinced everyone that my lupus was the cause of the fever and that I'm not getting sick with a cold, etc., so they let me have it.

My doctor isn't happy with my results still, so he's definitely putting me on Benlysta. He wanted me to start it ASAP, but we had a little talk...I'm leaving the country in less than 2 months, and we both agreed that starting something new right before I leave wouldn't be smart. So, I'm going to stay on my current meds 1 more month and have 1 more of these infusions, and then I have an appt set for 2 days after I get back to start Benlysta.

It's been a rough week....month...year! But we hang in there! Fingers crossed that my labs on Monday will show some kind of improvement at least for my kidneys!

Have a great Mother's Day!

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05/06/2011 05:53 PM
mumeva
mumeva  
Posts: 6150
Group Leader
I'm an Advocate

Lisa....I have a question about Benlysta. I talked with my Rheumy about it this past Monday and she said that I wasn't a good canidate for it. She said that it would not help my severe CNSV symptoms. What did your Rheumy have to tell you regarding the new drug??

I wish you the best and hope that you have good results on this drug.

Eva


05/06/2011 06:44 PM
zizzcat
 
Posts: 515
Member

Hi Lisa: I hope you feel better soon.

Waiting to start the Benlysta sounds like a good decision.

I hope your Kidney lab results are good. My kidney function is in the lower 40% but a few years ago it was down to 25% so you never can tell.

Take good care of yourself

Hope


05/06/2011 07:02 PM
AustinLisa
AustinLisaPosts: 110
Member

Hi Eva,

My doctor said that it would be a long shot as well, but since I've literally been on every drug there is, he wants to try it. He recently went to a conference in New York with Dr. Merrill...evidently she is a leading Lupus doctor. He says after hearing everything at the conference, he wants to try it, but that the frustration is that the patients in the trial still increased/decreased their other meds (including prednisone), so it's hard to know whether or not the Benlysta helped those that improved, or their other meds. He said, however, that there was enough of an improvement in some for the FDA to say yes, and since we've gone through all of the drugs now, we have to try it and see. I have some nervous system/neurological issues (although they're not nearly as severe as yours), and I'll be more than happy to let you know how it affects those. We're trying desperately to get my kidney/heart/lung issues to improve, but I would LOVE to find something that would help my neuropathy and muscle spasms. I don't necessarily always feel the effects of the organ stuff, but the neuropathy and muscle spasms make me about lose it at times.

I will definitely keep everyone extremely updated once I start on it. I'm so grateful that my doctor agreed to wait until I get back from my trip out of the country to start it!

Lisa


05/07/2011 02:33 PM
mumeva
mumeva  
Posts: 6150
Group Leader
I'm an Advocate

Lisa...thank you for getting back to me. I know my Rheumy didn't seem all that enthused about the new drug. I am like you I have been on every single drug there is and am on Rituxan right now.....I had a bit of news from my rheumy last Monday that I have to be on these infusion drugs for the rest of my life.....or if I ever go into remeission. Was a little stunned to hear that.....but like usual I just looked at her and said whatever you think doc.

I am very interested in how this drug helps you. I am like you and have horrible neuropathy in my feet and much of the nerves in my feet and legs are bad....also of course I have the head problem....I am blessed because I don't have other organ issues although were not sure about the liver as I am having some issues with that....so we would appreciate it if you keep us updated.

Hugs,

Eva


05/07/2011 03:09 PM
zizzcat
 
Posts: 515
Member

Hi Lisa: I've been thinking about getting a skin scraping from a dermatologist when I have the facial rash. I go through periods when I have it pretty pronounced and other times when I just look like I have rosey cheeks. Does one need to have an active butterfly rash to have a facial biopsy done?

Hope

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