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View Full Version : Men who done Benlysta Infusions



norsemanz
01-03-2013, 04:43 PM
Hello and thanxz to those who've welcomed me to the group! Here's my dilema and reason for posting here , I was DX'd 2 yrs ago and during the interum have been seen by several Rhuemies and the first couple I saw actually stunned me with how they behaved regarding Lupus whenever they were "stumped " by a symptom or issue that wasnt "Textbook" Lupus. The first rhuemie I saw after only 4 visits actually threw his arms up and said "Son ihave no doubt your Lupus is very active and your probably in alot of pain but other than HydroChloride????? the malaria pills I have no real idea how to help you" I knew immediately get the hell out of that office, and found better doctors. (BTW Ilive in Tampa FL) But back to the reason for this post,, even tho I'm pretty much at max dosages of Gabapentin and Savella and pain meds my pain is worsening to the point where I want to consider Benlysta but I would rather talk to men who made that step and get there feedback on the results, 1) did the infusions become effective and suppress the auto immune system enough to get the pain to relent, 2) how well did you tolerate the infusion, I know many of the women became pretty sick for a day or three But how did you handle it? I'm kinda at the end of my rope as far as continueing to fill my stomach with 20-25 pills a day and that doesnt include supplements ! So your feedback is humbly and greatly appreciated. I know the Doctor can tell me what he thinks will happen I want to know from those who had the infusions and make my decision on that info.
Thanks
Mike

rob
01-03-2013, 05:12 PM
Hi Mike,

Although Benlysta is fairly new, we are starting to build a base of knowledge here with the input of some members who have tried the drug.

In addition to the responses you will get with this thread, here is a quick link to all the Benlysta specific threads, posts, and blogs I could find
that have been created so far here at WeHaveLupus-

http://forum.wehavelupus.com/search.php?searchid=2807970

Hopefully we can help you find the answers you are looking for,

Rob

jmail
01-03-2013, 06:16 PM
Not to go completely off your Benlysta topic norsemanz Mike, but with your symptoms and history, have they done an MRI of the brain & brain stem, and/or any EMG and/or EEG stuff on you?

norsemanz
01-03-2013, 09:13 PM
Not to go completely off your Benlysta topic norsemanz Mike, but with your symptoms and history, have they done an MRI of the brain & brain stem, and/or any EMG and/or EEG stuff on you?

Yes, and yes,yes. As a matter of factyou'd be hard pressed to find many people who've listened to more CD's while sleeping in the Tube.. Back to the topic Benylsta ,, Dont get me wrong I'm truly not anxious about infusions (especially after watching my wife who's no longer with us doing round after round of chemo) and the posts I've read here by many of the females just so vividly bring back those memories, so that said I'm not a "try another treatment junkie" but I know at the dose levels I'm at, which are doing little at all I need to look at options because I dont want to spend the rest of my life eating drugs that are killing me from within!
Thanxz for the response!

jmail
01-04-2013, 02:41 PM
Yeah Mike, I was just concerned about other issues that can cause similar symptoms for a person, and you've seen the big "C" up close and personal...