Monday, August 26, 2013

T-2 days...

...Until I get my first Benlysta infusion.  So far I've raised $650 on my fundly page and learned that if I receive checks from people who would rather do that than make a payment over the internet I can go in and manually add it onto my page so that it is reflected in the running total.  I started researching what to expect during and after the first infusion and how to prepare for it.  I got a lot of interesting information, some helpful, some that sounded awful too.  I joined a group on facebook called 'Benlysta Buddies' which has a wealth of good tips and tricks in case you get hit with some side effects from the infusions.  I also posted on there asking if anyone had good experiences with their first infusions (or any thereafter) and if they'd share them with me.  There were a lot of people who spoke up saying that they had no ill-effects from the infusions at all.  Some that said they were fine except for being tired afterward.  And then a few who said they had some side effects, but that they only lasted a few days and then for the weeks in-between treatments they felt so much better that it was definitely worth it for them.  I also asked how long it took for them to notice a benefit to taking Benlysta.  Some said it helped right away, some said it took a few weeks to notice any difference, and a lot said that they saw minimal improvement for a while but then after a few months they saw a notable change in their lupus symptoms. 

I called my rheumatologist about getting prescriptions for anti-nausea meds and something in case the infusion triggers a migraine (which I'm prone to anyway).  I just wanted to be prepared in the event that I had these side effects so I don't have to go calling drs and waiting for calls back etc if I'm already not feeling well.  He called back while I was at the gym so he left a message saying that none of his patients have ever complained of nausea or headaches while receiving Benlysta and so he doesn't expect me to feel any side effects from it either, but if I do I should call him and he can address it then.  Not exactly the answer I was looking for, but it does *kind of* make me feel better that all his patients have had good experiences with the drug.  I'm praying I'll fall into that category as well!  Please pray that this all goes as well as it can and that I'm not a ball of nerves going in to get the infusion because that will just make it all worse.  I'm looking at it as 90 minutes of uninterrupted reading time, woohoo!  :) 

1 comment:

JoAnn Nehs said...

Yes you need to try and stay as calm as possible before your infusion. I know it will be hard but it will probable help a great deal. I am praying very hard that it all goes better than expected. If you need any help please call I am not much help lately but can at least watch the kids if you need me to. So you can nap or whatever. Love you Lea