Blubbering mess

I'm having a bit of meltdown today. I'm upset the Rituxan doesn't seem to be working this time. I'm the type of person who is basically terrified to try new medicine. I don't know why, I'm just like that. I know I need to put my big-girl pants on, suck it up, and get on with life... but today is really hard for some reason.

Anyone have any words of wisdom?

Kristine:

I'm the same way with trying new meds. I've tried so many over the years for Lupus and have had problems with every single one...can't find any that help and they have all caused damage. If I don't treat, Lupus causes damage.

I don't have any words of wisdom. If I did, I'd use them on myself. All I can tell you is that it's best to take your time and really think things through before jumping into anything. I'm sure you will do that without me telling you. Drugs are scary, but one good thing is that you can read the experiences of others and see how things have gone for them. For example, most have done really well on N-Plate with few side effects. There have been a handful who couldn't tolerate it, but they just stopped it with no visible consequences and moved on to something else.

Don't give up on Rituxan yet. I've seen many late responses over the years. If it doesn't happen, you will move on to the next thing and hopefully, that one will work. Luckily, there are so many more options than there were even 15 years ago. You'll get there.

Thank you so much Sandi!! I looked back and I'm at 5 weeks since my first Rituxan treatment. I'll try to wait as long as possible before trying something new. My count on Wednesday was 17. I have some spots in my mouth and now a little bruising but nothing too, too bad.

I just had a bad morning, I guess. I'm feeling a little better now.

Thanks again! I hope you are able to keep the Lupus in check somewhat.

I can understand that it's scary when we try any new medications. All we can try to do is research and remind ourselves that the side effects do not happen to EVERYONE and just take a leap of faith. Hang in there.

I got my CBC's today and I'm at 22k.

Kristine,

I will tell you from personal experience that Rituxan did not work for me. It is scary to try new meds but for me the risks of bleeding and just feeling fatigued and achy all of the time do not outweigh the risks of meds. I agree with Sandi, do some research on treatments and see what you feel most comfortable with.

I think the success rate with Nplate is around 87%, which is pretty high. Promacta is slightly lower. I will speak from personal experience that Nplate just made me achy and I have no side effects on Promacta.

Itp often feels like a rollercoaster ride. What I have learned the past year is that you will have rough days, but life goes on and most people with ITP live very normal lives.

Kristine, when you "this time," does that mean that Rituxan worked for you once before?

The risks of meds outweigh the benefits when you are left with permanent damage. Unfortunately, you never know what that might be until you use the drug.

I had Rituxan 5 years ago. My platelets were mostly between 50 - 80 for the duration. I've also had IVIG and Prednisone. I don't ever want to take steroids again. I don't tolerate them well at all! IVIG gives me blisters on my face and chest. It works great, but I want to save it as a rescue. My blood type is negative, so I can't use one of the other treatments. I have been researching and I think N-plate is the next best choice. I'm not ready to lose my spleen.

Thanks everyone for your wise words I really appreciate it.