Talks of splenectomy already??

A little background - my husband was diagnosed in February with ITP. After a hospital stay, 2 rounds of IVIG, failed prednisone we tried with WinRho about 3 weeks ago. He had serious migraines so that was only done once, and we started Rituxin. He's going in for his fourth treatment tomorrow (one a week). He was stable at around 30k for the last two weeks and we were feeling optimistic.

He went in today for a count and he has dropped to 14k. His doctor is now talking about a splenectomy. He wants him to have the fourth rituxin treatment tomorrow and he'll check the count again on Tuesday. From what I've read on the board it seems way too soon to be talking about a splenectomy. Living 10k-30k for the last few months, he's had no symptoms at all and feeling fine. The WinRho might've been what kept him stable the last couple of weeks but the migraines were so bad I think he his nervous to try it again.

I've read Rituxin can take weeks to kick in. Plus his doctor said maybe a pill, Promacta maybe? So I just feel that jumping into surgery at this point is way too soon.

We both feel very disappointed, very defeated today after the count. We were so excited last week that the count was stable for 2 weeks at 30k - his doctor said there might be an increase this week! Which upset me because I know Rituxin can take a while to work and he hadn't even finished his 4 treatments. It was almost like he unrealistically got my husband's hopes up.

Thanks in advance for any thoughts - oh and one more question...has alcohol affected your counts at all? Since the beginning the doc said not to drink, which he hasn't. But his 33rd birthday is on Monday and I want him to be able to have a beer or two. I'm not talking about getting drunk - but just a beer or a glass of wine, he deserves it!

Thanks again!

Hello there! Lots of info you got there!

First of all, having a splenectomy is a choice the majority of the time. You can choose to do it or not do it. Some people choose to try it early on and some people choose to wait. It does seem really soon to me to discuss it, especially since he's not even finished with Rituxan. You've read that it can take up to 12 weeks. Most respond sooner, but some do not. When I had Rituxan, my counts were 3 the week of the third infusion. When I went back the next week for the 4th, they were 150 and stayed up for 13 months. It can happen that fast.

Try not to let the lows get to you. This is the nature of ITP and rolling with the punches will get you through it. As long as he is feeling fine and having few symptoms, pick yourselves up and say "Next week will be better"! Eventually, it will be.

As for alcohol, that is a personal choice. Some people continued to drink moderately and some have not. I personally did not feel that a few beers now and then would hurt my counts...I wanted to continue life as normally as I could. Alcohol supposedly inhibits platelet production, but I'm not sure how much alcohol that would take. Going AMA would be his decision.

If you do think you might want to try WinRho again, you can do some things that might help reduce or prevent the migraine. You can ask for a slower push, and you can ask for pre-meds (benedryl, tylenol) and you can drink lots of water and maybe get saline too.
Erica

Sorry to hear about your husbands diagnosis. I think it is way to early to be considering a Spleenectomy. Once you have a spleenectomy there is no getting it backand no guarantee it will work. I have a friend with ITP/Spleenectomy, her counts are rarely over 50k and she is always tired. So, I am not convinced a Spleenectomy is the way to go. It will be an absolute last resort for me. Rituxin can take awhile for it to really kick in so stay Positive. I felt the same way after my Rituxin. It was about a month before my counts went up. I have had two treatments, first one lasted 11/2yrs. The second is going on 19mo. I was told that Promacta was the next option. Stay Positive, tell him to try not to STRESS out over it. I feel stress has something to do with ITP. As far as alcohol; I did not drink at all for quite a while after diagnosis. I was affraid alcohol would affect my counts plus my wife would not let me. Not trying to scare you but a few months ago I had a count of 350k, feeling like superman again I started having a few beers Friday nights, 2-4 bottles. Now I am down to 160k. Still a good count but I am wondering if the alcohol has had an effect.
Highs and Lows are one of the issues with ITP, so try to roll with it and stay Positive. No symptoms and feeling fine with a 10k-30k counts, I would'nt worry to much. If you have trouble with insurance covering Rituxin, Sandi has a link that may help you. My insurance denied my second round of Rituxin the day before my 4th treatment.
If your husband ever wants to talk feel free to send me an email.
Take Care
You have tons of support here.