Please help me... I am very neverous and scared.

I just want to let you know that I had Rituxin and was given Tylenol and Benadryl. The first time I got a rash and shortness of breath. They gave me a steroid injection which helped considerably. I had no side effects the next three times. Unfortunately, it did not help my platelet count at all. However there is a 50/50 chance of it working so if it didn't work for me, chances are it will work for you! Good luck!

I have been diagnosed with ITP, CLL/SLL. CLL /SLL in remission for 2 years. ITP is my issue. I get rituxan, Benadryl and decamethasone treatment every four weeks right now. I have had no side affects. Platelets as low as 8000 but now just over 30,000. Every person is different. Make sure you have a good doctor and one that REALLY understands ITP. It makes all the difference in the world.

Where do you go for treatment. I see you are in Pa. I am from The State of New York

Hello,
I just wanted to throw in my 2 cents. I had (have) ITP and battled treatment options for about 5 years. I was on Dex, and it worked temporarily. I was on Pred, but the side effects were a killer. Up all night, couldn't stop eating, water retention. Retuximab was just coming out as a treatment option and I wasn't lucky enough to get to try it. I was on a every 3 week dose of anti d for almost 4 years with no issues. 2 years ago I had my spleen removed, and trust me it was a hard decision, and I haven't had a count below 400 yet. I hear good and bad things about it re emerging, but it helped me to know that people are able to beat this with whatever works for them. It takes time to evaluate all the options available now, but you can do this!! Be informed and watch for side effects, don't be afraid to ask for something else if you feel uncomfortable with the options presented.

Ok 4 weeks after rituxin and no change well a drop actually but I think do to the lack of dex now that was given during treatment. Now what's next? Did ritux take longer to work for anyone else? Is there still hope?

It can take 4-12 weeks on average for the Rituxan to work so you still have time and reason to hope. Erica

Erica, Sandi ,Dru anyone that responded to rituxan please share your response rate after last treatment .... Did platelet count rise gradually or just come up one week? How many weeks to respond? Anyone have successful splenectomy? Does n-plate really have 6% chance of causing leukemia? Thank you so much for responding and your helpfulness... My mind is in overdrive...

Rosa:

I had a pretty quick response to Rituxan. Infusion week 3, counts were 3k. Infusion week 4, counts were 150k. It does not happen that way for everyone.

I don't know about N-Plate and risk of leukemia, but every treatment has risks. Immunosuppressants also carry cancer risks. Luckily, they are rare.

Thank you Sandi.. Big hug!

Hi Rosa,

Well at least you got through the treatments okay. I responded pretty quickly to rituxan but not everyone does and it can take up to 12 weeks.

Try to stay positive. For me I find it is better to not dwell on possible side effects, the most serious ones are rare. Many people have had good success with N plate.

Update... 7 weeks out after rituxan .. And I am back down to a 25. Still holding on at 10mgs of prednisone. I know I keep asking how fast others responded and I understand it can take up to 12 weeks. But I can't help but ask again if anyone has taken this long to respond? I opted for he low dose 100 mgs. Now I question if I took enough.... Or if I just failed. I had a bone marrow biopsy last week.. Horribly painful but it told my doctor I am healthy and making lots of platelets so he determined its straight up itp. Promacta users are there side effects? Please if anyone can shed some light or their experience I appreciate it and your prayers!

That bone marrow biopsy did not have to be painful. I felt nothing. If they do it again, tell them to sedate you with versed and fentle something or the other.

You have my prayers. However, I'm on Nplate, not Promacta and it has been the only thing to bring up my counts.

That sure would have been nice to know because to date to be honest it was one of the most painful things I have had done! thank you for your response... Blessings

Are you on nplate because your bones are not producing? My bone marrow biopsy showed I was making platelets like crazy... Hoping promacta works while I consider spleen. Running out of options. Thank you for responding

I posted this earlier at another place. Really, I felt nothing but a little movement.

I am puzzled as I have read in a number of places people talking about bone marrow biopsies being very painful. I have read posts that say no sedation was given prior to the biopsy. When I had mine about a month ago, I felt almost nothing and what I did feel was not painful, just something far, far away. So I decided to write down what I was given so that it might help someone else have a better experience. Prior to me going down to the biopsy, my nurse gave me two 500 mg hydrocodones. When I was in the biopsy room, I was given 4mg versed and 200 mcg of fentanyl. Also given 10ml of lidocaine locally after I was sedated on the other stuff. I was only vaguely aware of what was going on. I had read ahead of time what I was supposed to feel, so that when I felt the first thing, I thought, "Oh, that must be the 'sharp' feeling," but it wasn't sharp. Then I felt something else and thought, "That must be the drawing out," but I barely felt anything at all. Maybe you could request these drugs if you have to have a biopsy.

Ms. Rosa:

The bone marrow biopsy cannot determine if platelet production is adequate. Doctors only think it can. Recent research has shown that most people with ITP do also have production problems and I would think that is especially true if treatments that prevent destruction are not working. Please read this:

pdsa.org/forum-sp-534/6-general-itp-discussion/11698-bone-marrow-biopsy-and-production-answers.html

Has anyone been told their platelets are large under microscope? If so why is this what did they say is the cause? My doctor said its because my body is compensating and making larger platelets to stick around longer... Can someone help me think this through? Do we just keep trying meds and see what sticks? Because promacta is next... They told me spleen but I kindly referred them to a site that stated do not take spleen while B cells are depleted. Mine are as I just finished rituxmab. I'm scared to tell you the truth... Any predictors med wise that a splenectomy would work? Any splenectomy people did you respond to anything pre op? That was a good indicator? Thank you

It is normal in itp for the platelets to be bigger, your bone marrow has to keep making new ones all the time. Do you trust the doctor who is treating you? Can you get a second opinion before you start thinking about a splenectomy?

Is your plan now to try promacta? Many people have done well on promacta.

Yes, people with ITP have large platelets. They are large when they are new and get smaller as they die off.

Most people have to try a few treatments to see what works best for them. It can be frustrating, but it is the only way to treat ITP at this time. I went through three treatments until I found one that worked.

There is no way to predict splenectomy success. The platelets can be destroyed in the spleen or the liver, or both. If they are destroyed in the liver, a splenectomy won't help. There is a test in the UK that can tell where destruction takes place. It won't predict success, but it can predict failure and save a spleen for someone with liver destruction.

Promacta is a good option for you, Rosa. I hope it works!

Good for you Ms Rosa, giving your doctors some good information about splenectomy. Your big platelets are just new platelets, like Sandi and dru say.
Erica

Hello itp family... I just wanted to let everyone know that I have been taking primacy a now for approximately 4 months. I am holding around 50-55 platelets on 37.5 mgs promacta. My doctor and I are happy with this... My liver counts are monitored regularly. I thank God for giving me this peace and break from worry. I think about all of you and keep you uplifted in prayer! Thank you for walking this walk with me...

Wishing everyone high platelets

Rosa

Promacta!!! Got to love spell check

I've been wondering about you! I'm so glad things are going well for a change. Good for you!

Isn't amazing how when your first diagnosed we look for really high numbers. Than after a while a stable count that is lower is something to be happy about!


Glad to hear Promacta is holding you steady! Enjoy!