Hi Slim, I noticed your last blog was in June of 2011. How are things going with you now? I am getting my first infusion tomorrow and just want to know how things go.
wow slim u sound a bit like me.it sucks not knowing if it the med lupus or a secondary illness causing ur pain. i go thru that guessing game alot. but please keep up with ur benlysta updates. i was going to take it but am too scared. today was real bad for me. yesterday was hubbys bday n i was running around like a chicken with my head cut off stressed out.it was real nice tho. i couldnt use my hands open my pill bottles lift my arms or feed myself very well. it was baaad. i thank God for the help of my hubby tho. anyhow i would have needed a central line port n i dont heal too well. i have cancer in my family and an abnormal pap. so i worry cause it increases the risk of cancer but doesnt cause it tho. but still... anyhowim sorry u had such a prob with the pharmacy. they can be annoying. n cudos for u for brining up a bright kid.i sincerely hope it works for u and that u get better. im up to 60mg pred till my flar goes down hopefully ill get perc to help.by the way im berniece. i wish u the best
My lupus was pretty much under control, I would have a flare up about twice a year, get iv solu medrol and continue on. Now i get flare ups every 2-3 months requireing hspt. stay iv steriods,and imcurrently having a flare now that i cant seem to shake, had 2 disks removed from my neck that was compressing on my spinal cord and the neurosurgeon thinks the lupus ate away at the disk causing it to turn to mush, when my flare is at its worst i cant walk without a lot off pain, now its to the point i cant put weight on my left foot, almost fell in the shower, now i use a bathchair. My rheumy says as with some of his patients the disease gets worst as time goes by.I know benlysta wont cure me i just want to have fewer flares so i can exhale. Its been flare after flare, lots of iv steroids beside my daily dose of steroid n hspt.stays, er visits. I need a break. thanks for the wishes and i hope you are well n in no pain. how is lupus treating u?
ill keep posting round three is on wednesday.
With everything else you deal with, thanks so much for your posts on Benlysta. Hope this is a whiz-bang med for you. I am curious what your lupus involves and what you hope this will help. Best wishes. I'll keep looking in to see how you are doing!
When you get to the main page find the place that says "Lauries Lounge" or "Medicines". click on that and you will see (top right of the page) it says POST NEW THREADS. Click on that and it will open up to a blank page and you just type like you do here. If you want me to post it for you in the main page let me know. I will be happy to do it!
hey tgal , as you can see I still cant remember how to post this on the forum. So can you message it to me . thanks for the congats on my daughter and dont uncross those fingers , i really want this medication to work, so i can have less flares. how have you been? Im hoping you have been in less pain and have less stress. have a nice night and ill keep you posted on the Benlysta. hugs slim
Hey Slim! Sorry I am so late I seldom come over to the blog section! You need to post this stuff in the forums! I am keeping my fingers crossed for you! Congrats for your daughter!!! Takes good parenting and not just a good kid to get that!
Thank you lovedbyhim and welcome to a really incredible site for lupus suffers .You can come and vent, ask a question , or just write a thought and someone will answer you. when no one understands what you are going through or doesnt think you are sick because you look normal, someone hear will always understand.When I was getting my IV treatment another patient told me something that I found profound . ( their was a man who always complained about having no shoes until he came across a man with no feet) here was this older lady who had been on steroids since she was 22yrs., had 2 heart attacks, and was wearing a wig due to her losing all her hair, and she was upbeat and genuinely nice. Since then I keep her in mind and hang in their. Lupus may leave battle scars but I will continue to fight the war until my last breath. BY the way love the name. thanks slim
Oh my...hope it gets better and it works for you slim. I'm new here, but I am always reading and wanting to know how the benlysta is working. Hang in there and enjoy that daughter!
Thank you sooo much .I needed to see you just made my day. I am tired in pain and I increased my pred. to try and manage but I am just plain tired of this. My flares are coming too iften and Rheumy says either use new med that came out or take IV chemo for 6 months to counter act my over active immune system. Not looking forward to either choice especially since new med didnt work well on African-american and the side effects are infections, cancer and death. Let me stop venting and thank you again hope you are having a pain free day. Hugs Slim
Sorry you are going though so much pain. I hope they can help you soon. Praying for you.