Treatment crossroad

My daughter has had ITP since 2008. We have tried most all of the treatments: WinRho, IvIG, Prednisone, Promacta.

She has been on Promacta since 6/11 when her platelets were at 1,000. Also started 50 mg of prednisone at the same time. She got a good bump within 10 days and we reduced the prednisone over 20 days and then off. The platelets keep gradually decreasing and even though we increased the Promacta to maximum dose after a drop to 7,000, started a pulse of Prednisone again, got a boose again, but after 3 weeks and decreasing the prednisone, she is again at 9,000. We are wondering if the Promacta ever worked or was it just the predisone? We sure hate the prednisone. It looks like the options may be - continue prednisone (dropping Promacta - by the way, how do you get off it?), Spenectomy, Rituxin, or ????? She is 21 and trying to complete her junior year 3 hours away at college.

Any suggestions????

Gay K

I would ask the doctor about another treatment if her counts are not improving. I surely would do surgery at the very last resort. I am in the process of Rituxan treatments now, I have one more to go.

You can just stop the Promacta when you want off it. You don't usually have to taper or anything. There's always Nplate to try which has a higher percentage success rate and if you get them to allow self injecting it's an easy treatment.

I have to ask about the date she started Promacta simply because it's bugging me.. you say 6/11 so is that 6th November, 11th June, or June 2011? Haha.

Sorry, 6/7/11. I am about crazy so.....

Talked to the doctor, they aren't sure if she is a Promacta failure, or if she is only responding to dual treatment with Promacta and Prednisone. The whole idea was to get off prednisone. They are going to taper the Prednisone again and then if she is stable, try tapering the Promacta.

She has had such bad experiences with the infusions, I have been afraid of Rituxin, but that may be where we are heading if this doesn't work. Stressful!!

Every treatment has it's risks. Personally, I would not suggest a Spleenectomy. I have had two Rituxan treatments. First lasted 16 months, second is over 2 years now.

Rituxin scares me. Maybe it is just my ignorance. It seems that some have had good results. Marina has had so many side effects with WinRho, IvIG - I just hate to take chances. We meet with doctors on Friday. We'll see what they suggest. She just had a 50 mg pulse of prednisone for 5 days, then down to 30 - platelets went from 9,000 to 66,000. She gets tested again at doctor's appointment Friday.

Splenectomy can be pretty scary too. All of the treatments have risks.

How to you decide on which risks to take - toss a coin? Boy, it sure scares me. We see doctor tomorrow, we'll see what he has to say.

Gay - for me the decision was pretty easy. I also had to decide between splenectomy and Rituxan. For most people, any side effects they have from Rituxan are temporary. Side effects/problems due to splenectomy can be life-long and on-going.

It was that simple.

Gay

We have a 17 year old trying to complete his junior year in high school and have been given the same options. We met with the doctor yesterday to go over them. Rituxan vs. Spleenectomy vs. N-Plate vs. more agressive Pridnisone (No thank you). I think the N-Plate is only prolonging the inevitable and the Doctor even said it would be to get him through high school and then he could deal with it then which doesn't sound appealing as he would then have to deal with it prior to or in college. They said a 4-8 week treatment of Rituxan and wait to see if it works, the ITP may or may not come back and if it does then we could move to a splenectomy or visa versa have a splenectomy and if it doesn't work there is always the option of Rituxan, my son lives and breathes sports so for us it is a very difficult decision, we meet again with the doctor on Monday so I will be very interest in watching your post to see what people have to say, my fear is waiting and having Zack loose his Highschool years to medical issues. I did get 2 different responses from the Doctor and his assistant (College Student) The doctor said if it were his daughter he would go the route of Rituxan and wait and see. The College studant (Basketball player) said she would have a splenectomy as she is a Type "A" personality. " If the spleen isn't working get rid of it, Time to get back to normal life if we can". I was actually hoping for the same response from both. I hope things go well for you and your daughter.

I will be very interested in watching the reponses to your post, Thank You.

Jeff Engen

Jeff - with ITP, the spleen is working just fine. It's just that antiplatelet antibodies send the platelets to the spleen to be destroyed. After splenectomy, the antibodies are still there and the liver can actually take over the function of destroying the platelets. A splenectomy is not a cure and ITP can recur at any time. The length of remission varies from person to person.

Splenectomies can also raise the risk of blood clots for some people. If the splenectomy fails and you then need N-Plate or Promacta, that risk goes up even farther.

One more thing...splenectomy can raise the risk of infection and if it fails, a person may need to treat with immunosuppressants (Rituxan, steroids). In that case, a person is even more immunosuppressed than they would have been if they'd had a spleen.

Just some things I would like to have pointed out to me if I were considering it. There was a teen here years ago who treated with Rituxan once, went off to college and is doing great. I think it's her 8th or 9th year of remission. Anything can happen. Tough decisions ahead.

I had a very low platelet ct a few years ago...10,000....have been living with ITP since 1997...hemo put me on Prednisone for 2 seperate treatments awaiting to see if my insurance would pay for the Rituxin treatment and at the same time to see an increase of platelet development.....FINALLY I had 2 Rit treatments almost 3 years years ago and have held a ct anywhere between 80,000 and 155,000.....I would definately look into the Rituxin...I am also eating Much healthier. Had a series of blood tests done in November 2011 to see what my body reacts to as in foods, environmental factors,etc. Now knowing what strong reactions my body has in the food catagory, I am staying away from all of it as I believe our bodies can develop a strong reaction/distress which can hinder healthy platlete growth and can work against healthy autoimmune responses. I have an immunologist and nutritionist that is working with me. Have ny next count done end of February.....it takes time for healthy platelets to develop...maybe a week or so from it's embronic stages...and having ITP for so long may take months-years to get a normal consistant count but I am willing to do whatever it takes.
As far as getting dizzy, yes, I too, have that and feel lightheaded at times...

Hello to you all!

After practically living here for several years, I just had an odd experience--I couldn't remember my password!!!!

Gay, I know I replied to at least one of your early posts, telling you of my daughter Caitlin's major success story with Rituxan. She is the one Sandi just mentioned, but I'll fill you all in a little more:

Caitlin developed ITP at age 14, was actively bleeding at 2K and needed transfusions and GYN surgery to get her bleeding stopped. She had the then-standard treatments in short order--IVIg, WinRho and finally, Dex pulses. Only the Dex was truly successful--but they had so many negative side effects for her, including significant weight gain, hot flashes we could see, stomach upset, and lots of nervousness. She became a hypochondriac, and then, we saw the beginnings of panic attacks. True, the steroids had allowed her to continue her fairly active lifestyle on an at-least-occasional basis--she was co-captain of swim team, in an adventure-seeking Girl Scout troop (whitewater rafting, rock climbing, etc) and the big one: rode very large, very fast horses two to three days a week. But at what cost? Her social life took a major dive, she felt rotten and slept much of the time and we worried about vision problems and bone loss due to the steroids. After about 9 months of this, something had to change.

At a consult with another doc, we learned about Rituxan. It was fairly new at the time, only a few other teens had tried it and posted results on this board, but their success spurred our hopes! She had a 4-course round of Rituxan in Sept.-Oct. of 2002. Her platelets responded well and quickly--over 200K within 2 months---and she hasn't looked back. She went to college far from home, played with wolf hybrids in Colorado, became a scuba diver, interned training dolphins, and now trains guide dogs.....and her platelet count was still in the normal range when she was tested in 2011. It's now 9 years, 4 months since that one and only set of Rituxan treatments, and still no petechia in sight. Her medic alert bracelet lives in her jewelry box, and at 24, she lives the life she wants!

Yes, they make you sign scary forms. True, for some people, scary side effects occur. But she is SOOOOO very glad she said 'yes'! In the interest of full disclosure, she did develop pneumonia between doses 2 and 3, and they had to slow the infusion when her heart was pumping too fast. She did have some headaches at the time, but they may have been more related to going off the steroids than the Rituxan?? Who knows?? But practically every time I get on here, I say the same thing: Thank you, thank you, thank you to Ron (of the original Rituxan Scoreboard) and all the people here--and to Genentech, who employs positively brilliant minds!

The long and short of it, Gay (and Jeff's son!) is this: Rituxan represents the possibility of NORMAL again--without weekly shots, CBC's, poking, prodding or other treatments for (we were told) six to twelve months. Six to twelve--to 112 and counting!!!

Look--up ahead! Is there light at the end of the tunnel???! I hope so, for each and every one of you! To infinity and beyond with those platelets, people! Ann, Caitlin's Mom

I would go with the Rituxan. There is no guarantee it will work but for most it does. Even if only for a short time. Some have extended responses to a 2nd round of Rituxan. The splenectomy is permanent. No going back after that.

Just for the sake of accuracy, in some studies rituximab has been shown to work in 30% to 40% of patients while in others it's over 40% but under 50%. But when it works it seems to work well.

We had an hour-long consultation with doctor yesterday. Marina is pretty adament about not wanting to loose her spleen. Rituxin is scary especially since she had Hepatitis C, which she was treated for in 1999, and has been negative since. There seems to be a slight possibility that Rituxin could reactivate the Hepatitis C. I am going to check with her Hepatologist and see what her opinion would be on that. So for now, we are going to continue the Promacta 75 mg and slowly decrease the Prednisone from current 25 to a level where she is stable on the Promacta and Prednisone. Then he would like to decrease Promacta to see if she is getting any benefit from Promacta or if benefit is all from Prednisone. It might be that even though Promacta is increasing the platelets, that is just ramping up the immune system to destroy more. What a conumdrum. Rituxin sounds great if there is a chance for a long remission. She has a stack of CBC results that is 2" high.

Still on that rollercoaster. Saw the doctor on 1/20 and decision was to gradually wean her off prednisone and then try to wean off Promacta. She was at 99,000 with 75 mg Promacta and 20 mg Predinsone. Then 1/22 with Plalets at 66,000 he decided to take her off Promacta and keep reducing the Prednisone to 15 mg. On 1/24 platelets jumped to 101,000 - reduced prednisone to 10 mg. Now today, platelets down to 19,000. Waiting for doctors call. What a mess!!