Thursday, January 3, 2013

Round 3 update - and I think week 18?

Again, apologies for the delayed update. I had another blog started immediately following the third round (a week before Thanksgiving I think) but just have been sidelined with other things.

Treatment went as expected - I had steroids, benadryl, tylenol and fluids before starting. About halfway through the infusion I had difficulty breathing - or tightness in my chest. My husband flagged down the nurse and we stopped the infusion, had more iv benadryl and waited an extra 15min. Then we started right back up and got to my max of 350. All very normal according to the nurses. The one thing that was different is that my stomach pain (which had decreased dramatically) started flaring with about an hour left in the infusion.

I was more than exhausted the day after the infusion but rallied to get on the plane home that evening. Full recovery took me 3 weeks this time. I was really hoping for 2 weeks and it's not that the entire 3 weeks were horrible but really wasn't feeling 'better' until 3 weeks out. Nausea, fatigue, dizziness, weird feelings breathing (in the beginning). Stomach pain was tolerable and I felt like I jumped on top of it earlier with meds, etc.

In the past month I had a HIDA scan - which was completely normal.
But the biggest problem for me has been facial pain. I've dealt with a lot of horrible dental issues this year and about 3-4 weeks ago was woken in the middle of the night with horrific right jaw pain. It felt like it was really deep in my bone. Oxycodone did not touch it. But it finally went away and then a week later the same thing happened - and 2 oxys did not touch it, which made me nervous. I saw a quack of a dentist who wanted to rip out 1/2 of my teeth and do all sorts of surgery. But when I pushed him on things he back tracked...was just a sales guy. I do have serious TMJ issues but the facial pain I have never experienced before. It is like atypical trigeminal neuralgia in that it is unrelenting. It's gotten worse again and I've been playing around with lyrica. I hate being on it but it does help with the pain.

Overall though (except for the days when the facial pain has been incapacitating) I'd have to say that I'm doing more. What I mean by that is that I am doing more activities such as grocery shopping, appts, etc and not necessarily crashing or feeling like I need a 2 hour nap. That said, I'm not out running marathons and I did do about 5-10min of a kid yoga dvd with my daughter - felt fine that day/evening but the next day my muscles were really sore but not in a 'normal not cfs way'. So I still can't say that rituxan is making a HUGE difference but maybe it is.

Up this month is working with a neuromuscular dentist on getting my jaw in the right position. Seeing an atlas orthogonist (per this dentist recommendation).  Also seeing another biological dentist for a second opinion.
Started working w/ a homeopath and also just had an acupuncture session for facial pain.

Wish I had more to add...and just hating that I'm dealing w the severe facial pain since it's caused an addition of new issues and new drugs (lyrica) which make me feel out of it. Not what I need when I'm trying to feel less tired!

Will try to update again in a couple weeks.


Post a Comment

Subscribe to Post Comments [Atom]

<< Home