My husband was diagnosed with ITP after having Type B influenza. His Dr. has him on prednisone in a descending dose from 60mg to 10mg over 6 weeks. It's not working. His platelet count went down to 3,000 and has been up an down for the past month from 16,000 to a high of 51,000 and then back down to 19,000. The Dr. wants to try 4 treamtents of rituxin. Has anyone here tried this and what was the result? He is having a hard time with prednisone - too many bad side effects.
I personally haven't tried Rituxan for my ITP, but I know lots of people with ITP who have had great success with it. There seem to be few side effects - except the infusions tend to take a long time because they have to drip it so slow to make sure you're not having a reaction.
Also, it doesn't work immediately - it takes some people up to 3 months to have a response, so they usually do something else with it to raise the counts like IVIG or Winwhro, or Prednisone. Don't be surprised if they suggest it.
But for those who have a good response, the remission can be up to 18 months. By the way, it sounds like you have a great hema - most hemas only know to suggest splenectomies and pred, nothing else. Rituxan is a great option.
Being on Pred and getting off Pred are very difficult mentally as well as physically. It does wonders, but it takes its toll as well. Be glad you have a hema who doesn't want to rely on Pred forever.
Thanks for the info. I read here that some insurance companies won't cover the rituxan so I'm going to have to check into this. You mentioned "remission." I'm assuming ITP is a lifelong chronic condition then. I guess the Dr. hasn't said that yet. He's hoping for a complete recovery for my husband. Hmmmm? The prednisone is causing my husband, a usually positive, "normal" person, to act very out of character. He is having some physical problems as well. From what I've read here, it seems most people have to take this medication for many years to try to maintain a liveable platelet level. Do you know of any other sites that might be of help in dealing with this problem?
We're not allowed to mention other sites here. I am a member of another online support group for ITP.
Yes, I did mention remission. If it is truly ITP, not just low platelets caused by another disease process like Lupus or medication induced or bone marrow production issue, then it is a condition that can go into remission, but not cured.
I had my spleen out in 1995 and was in remission until a bout of the flu in 2003 brought me out. A few weeks on Pred put me back in remission. Now it is very rare for me to have a relapse - usually only if I'm exposed to chemicals, that is a trigger for me. Most people do not have to be on Prednisone continually. It is not recommended.
Personality changes are part of the Prednisone treatment. Unfortunately. The good news is that they go away when you finish the high doses - anything 20mg and over makes me insane, mean, awful.
If your insurance doesn't cover the Rituxan, you can apply for assistance from the company to get it for free. Your dr's staff will probably knwo about it - it's called the SPOC program, I think. If you need more info, I can find out for you.
You'll find out what works for his ITP, and though it is awfully hard in the beginnning, trust me, it does become completely manageable. I promise!
Thanks for the encouragement Jill. I'm a patient person. My husband, however, is not. He loves to work out and having low energy makes that hard. The dr. told him to continue but his platelets seem to drop when he works out. The dr. cannot figure that one out and has tried to find any information related to physical activity and low platelets. So far, he hasn't found anything.
I didn't have any trouble with exercising and my platelets dropping. The only trouble was when I ran with low counts, my ankles bruised very badly from the shoes rubbing on them.
The fatigue is from the pred taper and from the low counts - double whammy, and the impatience is from the pred as well. I was a monster on it. I am lucky that my husband was so patient and great. Sounds like your husband has great support in you as well.
Hopefully your Pred days will be over soon. Maybe you should ask about Intravenous Gamma Globlin or Winwhro while you're waiting on Rituxa. Those are two very accepted first line treatments to raise counts. It could help his fatigue level to get his platelets up while he's waitingo nteh Rituxan.