ITS BACK! :(

After An Amazing Few Years Of Good Platlets 3 Weeks Ago i Started To Get The Petechiae Rash Over My Feet So Went To Get A Blood Check My Count Had Dropped Down to 5! I Was Put On 60mg Steroids For A Week And My Count Boosted To 46 Due To The Slow Rise I Was Kept On The High Does For Another Week But My Count Had Last Wed Dropped To 23. I Have NEVER Had A Drop Before On Steroids....They Never Worked Long Term Or Even Short Term But I ALWAYS Got A Drastic Boost.

Due To Me Having Most Treatments Steorids, Globulins (While Cause Aseptic Mengitis), Splenectomy & Rituximab My Heam Seems To Have Exhausted All Short Term Treatments.

I Have Been Given Info On Tablets That I Cannot Remember The Name Of That Apparently Cause You To Produce More Platlets To Out Weigh The Problem But These Are Long Term And Am Not Keen To Start A Long Term Treatment At The Age Of 20.


Has Anyone Had Rituximab With Years Of No Problems & Been Sucessfully Given It Again?

Any Adivce Or Treatment Suggestions Would Be Greatly Apreciated As I Am Really At The End Of The Line With ITP & Cant Be Bothered With This Fight All Over Again

Thanks Steph x

Was the pill Promacta? My first Rituxan lasted 16 months, second round is over 2years!!! You will get through it. Stay positive as ITP is quite a rollercoaster ride.

Sorry to hear that Steph.

Steph:

Many people here have had long term success with Rituxan, and had few side effects. It might be worth discussing with your doctor.

They have found the problem....i have grown a new spleen :ohmy: :S

Wow! It looks like the title of your post is appropriate in more than one way. I have read that this can occur (I had my spleen removed 2 months ago). When a splenectomy is performed, the surgeon looks for accessory spleens (which are smaller) and removes them if they are found. But if they are not found, they can sometime grow and assume the function of the original spleen. Given that the original splenectomy was effective, it seems logical to have another splenectomy- is this your plan?

Mark

Sorry Steph! It sucks to have to deal with it all again, after you feel like you have found the solution. I had accessory spleens too. Periodically my hematologist will check to see if there are new ones. So far, so good--which doesn't explain my sudden drop to 4 this morning. (But spending 3 days in bed with a horrible case of the stomach flu or food poisoning does.) It looks like I am starting out the new year with a treatment of prednisone. I wish you the best Steph!

Just going through everything again to get the spleen out!
it looks like key hole surgery may not be a good idea as last time it was open surgery and there a lot of scar tissue!

thanks x

Sorry to hear thet Steph!!!! Stubborn lil Spleen!!! How are you feeling otherwise??
I would consider Rituxan if the new Spleen is not an issue.

I am sorry to hear that your ITP returned along with your Spleen. (I wonder if that is common?)

Rather then rush into getting a splenectomy. You may want to look into long term treatments, because you may be in it for the long term, and you have a long life ahead.


You may want to consider N-plate, at least for the near term. Maybe in the long term, some one may actually figure things out. N-plate stimulates the bone marrow stimulator to produce platelets at a faster rate then you destroy them.

As far as treatment, it is a simple injection every few weeks, along with the blood letting and testing.

I have been on it far a year and a half, and no side affects. Some people do have some reactions, such as bone pain. I think I have more muscle pain from it, But my platelet counts stay above 80, nice and safe.

Good luck.

Steph sorry that it has come back. I found this group when I found out today that mine seems to have returned for the third time after 25yr of staying dominant. Platlets are at 110 but after have two spleens removed and a variety of steroids and drugs was hoping it was done but at least hoping medicine has caught up