I'll take a shot of courage with my IVIG, thanks.

So I was diagnosed last fall. Ever since then I have been on some type of steroid. My numbers go up into the 170's and I stay up through the entire taper, but as soon as I am off them completely, I crash. So I just got off again and I know it's starting. I was diagnosed at 10 with bruises but no outward bleeding.
Anyway, I am going to ask if I can try something else this time instead of the steroids, which I know my hemo will agree with.

I feel so lame though because I have been reading these boards for months and it seems that so many people have tried so many treatments for this - yet I am so intimidated and scared to try anything besides steroids. Well I guess I'm feeling both scared and sad at the same time.

I have done a lot of research and studying on the treatments, so it's not like I don't know anything about them.

So my question is - for the folks that felt the same way I do before trying their first intravenous treatment method - did you feel less intimidated after you did it the first time? I don't want to feel like this everytime I need to switch to a new treatment - I want to feel confident, like I am taking the bull by the horns.

When I crash, I crash hard - so I know I am going to have to choose my next treatment modality soon.

Yes, the second, third, etc get much easier. My first WinRho was after 15 years of no treatments and I was sure that I'd come back on my own but after 3 weeks (6K,one week to watch 11K, one to pre-approve, and then some scheduling issues at the docs office, 14K) I had to acknowledge that I had to treat.

When I get to the doctors office, I'm partially ticked that I have to do it and a bit nervous. Only to find, that they have had an issue with some one in the chemo room so there are Paramedics loading them on the stretcher to take them to the emergency room and it backs up the schedule until they can get them out of the office. Also, the front desk doesn't put up my chart and it's 20 minutes before they realize it, then the cbc, wait for the results, etc. So I'm in the office almost an hour before they get me back to the treatment room and I have to read the possible side effects and sign that I know about the possibilities. Then they miss the stick 2 times before they get a vein. By this time, I have great big aligator tears rolling down my cheeks and I'm already turning black and blue. Then 3 bags of pre-treatment (2 IV steroid, 1 benadryl) and then a very slow drip for the first treatment with winrho. Then the nurse freaks out that I didn't bring someone drive me (I only live 3 miles away and had a friend on back-up in case I couldn't drive). Finally 4 1/2 hours later, I'm home and crashed on the coach after the benadryl and stress. I was wiped out for whole weekend, which I contribute a lot to the rise in my blood sugars from the IV steroids.

The next time was a walk in the park! I just kept thinking, God could not line up that many calamadies on a consistent basis. And despite what sounds like a horror story, it was only one afternoon and a less than ideal weekend versus weeks of pred tapors. After treatment, my counts go up to the upper 100's or low 200's. Over time, we've decreased the pre-treat and then completely elmimated. Now I'm in the office less than 40 minutes and the drip is more like 15 minutes. I still occassionally have issues with them getting a vein, so I really focus on hydrating the morning that I'm scheduled.

Michelle:

I was so sick of Prednisone that I welcomed trying ANYTHING else. Oddly, I wasn't afraid. When I had Win-Rho, I just ran in on my lunch hour, had the 3 minute IV push, and ran back out the door to get back to work. Wasn't fazed at all and it didn't occur to me that I should be. It didn't seem like a big deal.

When I had Rituxan, I was excited about the possibility of remission, so I wasn't afraid of that either. It was a welcomed change and one I asked for. I'm not sure what there would have been to be afraid of? I knew they were well equipped to deal with reactions, so that didn't bother me.

I really think that one of the most important pieces of knowledge any ITP'er can have is to know there is one treatment out there that will work, in a pinch, if you need it. Yes, steroids are no fun, for most people, but don't look lightly on how great it is that you have a treatment you can go back to if you need it. That's a wonderful thing to have in your back pocket, even with all of the unwanted side effects.

If they work for you, the other treatments tend to have easier side effects, or at least side effects that are more constrained in time. Win Rho and Rituxan both fall into that category, I think. They are major league drugs, Rituxan in particular, so are not to be taken lightly, but the vast majority of us who have tried steroids have eventually moved onto something else, usually starting with one of those two treatments. Like any treatment, there are risks and pro's and con's, but education is your friend here. Neither Win Rho nor Rituxan worked for me, but, in terms of ease of use and side effects, I would take either one of them in a heartbeat over steroids.

Well I guess I don't have to think about it quite yet because the Hemo put me back on Dex pulses. Hopefully it will keep them up.
I was a full responder to Prednisone more than one time, I just drop completely after the taper.

So Gort, you're right about that back pocket thing. I should feel very thankful.

I just really wish I could find something that works longer, but then again, isn't that what we are all wishing for?

Thanks, everyone - for now I guess I am just sticking with the steroids.