Out of remission and looking for options

Hi. I have ITP and was diagnosed in 2012. I spent most of 2012 on prednisone and IVIG and finally did Rituxin that July. It worked, and I have been in remission for the last 2 years (with counts between 250,000-300,000). I also went gluten free at that time after seeing a natural doctor who suggested that would help (my levels went from 150,000 to close to 300,000 within one month of diet change). Well, all of a sudden last month my levels started to drop again. Slowly at first, and then last week they were at 50,000. I just finished a 4 day dose of dexamethasone to try to give me a boost and buy me some time until I figure out what I want to do.

I hated the Rituxin and the thought of having it again is like a nightmare, especially if it is going to need to be done every 2 years. I had an anaphylactic reaction to it on the first dose last time and was so ill i could not get out of bed for the entire 4 weeks I was on it. The dr thinks it will work again, since it worked before, but it was a really miserable experience that I would prefer not to go through again.

Has anyone had any luck with other therapies? Or has anyone had to redo Rituxin and had it last longer the second time around? How about spleen removal? My dr also said he has some patients who get the dexamethasone 3-4 times a year and that is enough. IVIG only worked for about a week on me back in 2012.

Open to any ideas, even supplements and diets.

I've been in remission from Rituxan for about 5 years. My counts are usually above 200. On several occasions they dipped below 80 (I was sick, etc.) and they went back up on your own. That could happen to you
Erica

Hi,

Is Nplate an option for you?

I've been using it for the last two years and have no side effect.
I sometimes need to add some prednisone, but that usually only temporary.

Cheers
Joerg

Some people have had longer remissions after a second round of Rituxan, but I honestly would not consider it again after anaphylaxic shock. Most of the time, reactions only get worse the more you use a drug. Something else was obviously wrong too if you were in bed for an entire month. I haven't heard anyone say that, ever, and I've been on this Forum before Rituxan was even used for ITP. I have seen both patient and doctors wanting to use Rituxan again after a bad reaction and my thought is: your risk of dying from low platelets is less than the risk of dying due to a bad reaction to the drug. There are other options. How low do your counts go?

If TPO's are an option, I would suggest those. I failed Rituxin and had success with Nplate and Promacta. I personally like Promacta because it's a pill so I only have to go to doctor monthly.

I agree with Sandi, I wouldn't put yourself through another round of Rituxin. That sounds awful.

My dr said he has never seen anyone have such a bad Rituxin experience. My throat started to close half way through the first treatment. They stopped the reaction and were able to finish the infusion, and then I had the next 3 without that happening, but they basically sedated me with allergy meds each time. The effects I had of the Rituxin were like that of chemo. I was dizzy, nauseaous, and weak for 4+ weeks. I could not drive or watch my kids, spent the entire time on Zofran, and lost close to 15 pounds. It was awful. I hate to do that again especially if it only buys 2 years.

I have read about some of the other drugs and the possible side effects seem worse than the ITP itself. It scares the crap out of me. I just finished the 4 day dose of dexamethasone and my levels are now 300,000 again. I go to see a new dr this Friday (due to an insurance issue i can't see my regular one right now). The new one is at Mass General in Boston and is the leader in platelet study in the Boston area. I am curious to see what he has to say. My current dr said he has some patients who just do the 4 day dexamethasone dose every few months and that is enough. He said the longer they do it, the longer is lasts. I also have a friend who did Winhro and had the same thing happen where she gradually needed less and less treatments and now has not had one in 3 years.

If it were a guarantee that spleen removal would work I would have them book the OR for next week. Recovering from surgery is better than my experience with Rituxin.

I guess I am more discouraged at this point. I just felt like I was good to go and things were going well, and then all of a sudden with no warning it is back and I feel like I am reliving the same nightmare from 2 years ago again.

I'm pretty sure that doctor has spoken at pdsa conferences. Is it Dr. Kuter? He is a wealth of knowledge.and information. I'm excited that you get to see him! I have a feeling he will listen to your concerns and make good treatment recommendations. I know it's a crappy situation, but as I have said once I saw a specialist it changed my life with itp and I'm hoping the same for you!

It is Dr Kuter! My own dr had to call in some favors to get me in to see him. I live in MA, but have been seeing a Dr in RI since 2012. At this time due to my insurance I can only see a Dr in MA, so he called and got me in to see him tomorrow. He said he is the platelet guru and has been doing this for years. I am glad to hear he has been at the conferences. That gives me some hope and I am looking forward to meeting him. They do some amazing things at Mass General!

DDinap:

Maybe you will get lucky and your counts will stay up. That was a very good response to Dex. Most people do drop quickly after a pulse, but once in a while that doesn't happen. There is a treatment protocol with Dex; 40 mg's x 4 days once a month for 6 months. Most people can't tolerate the side effects though as they get worse each month.

As for Rituxan, reactions usually do occur with the first treatment and anaphylaxic shock has occurred. I have heard of people who have had that reaction and were fine for the other three treatments, but when they tried to use Rituxan again, it happened again during the first infusion and was worse.

A two year remission is pretty good, many people cannot get that. There is a good chance you will get to that point again, but it will take some time and patience. Good luck with the new doctor, you will be in good hands. It will be interesting to see what he proposes.

Saw Dr Kuter today. He was amazing. I guess he was just at the PDSA conference in LA. My levels are still 300,000. He basically told me to pretend I don't have this issue as long as I feel fine and have no bruising and bleeding. He is very conservative and told me he does not treat unless there is bleeding or bruising, regardless of what the numbers say. He was very reassuring and I felt like he calmed me down a bit. Sounds like he is "the guy" for ITP. I go see him again in a month just to see where things are (since I just completed 4 days of dex) but he said after that he would only need to see my blood levels 1-2 times per year. He also gave me a standing order of 40mg of prednisone and told me to bring it with me when I travel, and if i ever wake up with bruised legs or bloody nose and gums that I should take one per day for 4 days.

I just hope I never get to the point where I wake up bleeding with bruises, or I will probably have a heart attack as well!

I'm glad you got to see Dr. Outer and things are looking up! Let's hope your counts stay up!

Sounds great! I'm glad you have calmed down. The specialists these days are not looking at numbers; I wish more doctors would go that way. In time, I guess....

Sandi,

I really hope you are right!

First off let me say congrats on the great count! Here's hoping the count stays high!


Secondly I'm addressing the comment

I just hope I never get to the point where I wake up bleeding with bruises, or I will probably have a heart attack as well!

Speaking from personal experience on that particular subject! The first time it happened I was terrified the last time It happened. I noticed after I was awake. Cursed because I ruined my new pillow case (than reminded myself I should of known better). Washed the pillow case and my face off (gums had been bleeding) and went about my day! Everything about ITP is scarey at first but after a while it becomes a pain in the butt!

I had the throat closure thing happen to me when I did rituxan they stopped the IV medicated me and continued. Did not have an issue with the next 3. Currently waiting to get it again when I see my doctor this week I'll will be reminding him of the fact that I had that issue with the first treatment!

That does sound scary! I think I would freak out. I just filled my prednisone to keep handy in case that ever happens. I am hoping it is one of those things I never have to use.

What are your levels now that you are going to try Rituxin again? Have you been having more frequent bleeding issues? I personally don't know if I could bring myself to do it again. But in addition to the throat closing I was also sick like I was on chemo the whole time I was on it. It was awful.

The new Dr I saw said he would not do Rituxin again, or if they did it would be a gradual thing where they got my body used to it over time so I did not have a reaction. Sounded more like he used Nplate to treat the patients he does use treatment for. I think he only treats 20% of patients, and says the rest look fine and don't bleed so he leaves them alone.

It is all kinda scary. Maybe it will get easier as time goes on. I have had it for 2 years, but have had no issues at all for the last 18+ months, so I kinda forgot I even had it. That was nice. Now I remember again and am a little more paranoid about it. But I tend to get paranoid about everything! lol

Winnifred wrote: I had the throat closure thing happen to me when I did rituxan they stopped the IV medicated me and continued. Did not have an issue with the next 3. Currently waiting to get it again when I see my doctor this week I'll will be reminding him of the fact that I had that issue with the first treatment!

Julia - you should insist on pre-meds. Don't take any chances. Like I said, for some reason, people that react to Rituxan may not have a reaction with the next few infusions, but when they go to start the next round, they can react even worse with the first treatment. I don't know why. That goes for serum sickness as well.

Sandi do not worry I see the doctor this week and will be insisting he set up premeds!

ddinap@aol.com I would agree with your doctor other than feeling a little punk for 24 hrs I wasn't sick. Sounds like Rituxan hit you hard.

As for my counts since I've been out of remission my response to medications seems to be higher.

so if you have bruising from it, are you covered in bruises? or is it just a few? i have a few on my legs but not sure whether i walked into something or my kid hit me with a ball. other than that i am fine. no mouth bleeding at all. and the bruises i have are small. i am paranoid now.

i am also going for an endoscopy tomorrow and have no idea what my platelet are. my GI says there is less of a chance of bleeding from the endoscopy than from brushing my teeth, but i am still nervous. i am not used to this not knowing. it is going to take some getting used to. the dexamethasone totally messed with my reflux and now my throat is burning, which is why i need the endoscopy. should i get a platelet count first?

i emailed my new hematologist, but never heard back.