Questions about treatment and rituximab...

My 18 year old daughter has been diagnosed with ITP. She only started symptoms on August 1st. Since then, she has had 3 IVIG bags, 80 mg a day of prednisone and a bone marrow biopsy. Her hemotologist wants her to do one more IVIG bag tomorrow followed by a round (total of 4) of reituximab. After looking on the web, I am scared to death that this treatment is too extreme for her. The warnings and side effects are frightening. She cannot seem to sustain any levels over 3000-7000 a few days after treatment. She raises to over 30,000 and then plummets.
What are some thoughts on this drug or others that could help.......and is remission really attainable. I wish it were a month ago.......help.
Cathy

This can be a difficult and stressful journy for both you and your daughter. I know that my mother had a very rough time through my ITP experience and cried each time she accompanied me to get Rituxan. No one can tell you what will and will not work for your daughter but we can all share experiences and things that have been learned.
Has your daughter talked about dosage on the Rituxan with her doctor? There have been several studies that have shown that lower doses of rituxan can be just as effective as the full reccomened dose.
Will she be recieving any treatments concurrently? some people continue steroids or other treatments during Rituxan and there can be pros and cons to this.
Be aware that Rituxan can take several weeks to kick in, so even if you don't see results right away it might still be working.

The more information you have the better choices you can make. Remember that this board is always here and between all of us we have probably seen/tried it all. What works for some won't work for others, but we can at least share information.

Cathy:

I know the side effects seem very scary, but they are really rare. Most people here tolerate Rituxan very well and usually find that it is easier than IVIG and/or Prednisone. It is a fairly popular ITP treatment that has pretty good remission rates.

I certainly wouldn't advocate for Rituxan to be used first in the treatment line up, but it does have it's place when others have failed. Most of the side effects occur during the first infusion and when that happens, they slow the drip and usually give more pre-meds. Most people find the infusions uneventful. I slept through mine.

Hopefully others will chime in with their experiences.

I had a round of Rituxan in 2006 that put me in a 4 1/2 year remission. I am now having another round, have completed 3 doses. During the first one I had some chest pains that were later determined to be stomach related. During the next 2 rounds I took an anti-acid and had no problems. My doctor pre-treats me with benedryl and hydrocortisone. Like Sandi said, most people get through the treatments fine, the nurses monitor well during the treatments. I am hoping for another sustained remission.

I went through 4 weeks of rituxan treatments this past June; I read everything I could prior to the first appointment and had so thoroughly freaked myself out that I cried all the way to the hospital and one of the first things my nurse did when she saw me was offer me an ativan

But you know what? I was just fine. Yes, the warnings and potential side effects are very scary, but it also seems they are very rare. I did have a minor reaction during the first infusion (scratchy throat, slight chest tightness), I rang the nurse, she came right away, stopped the infusion, did an IV of steroids and started up again. She was very calm about it and told me it was very routine; the rest of the infusions went off without a hitch.

One thing that helped ease my mind was reading all the success stories on this site; lots of people go through this treatment without a problem and reading about their experiences helped ease my mind.

To be honest, I don't think rituxan worked for me; there's a couple weeks left where its possible it could start to kick-in, but I haven't seen any improvment yet. But I'm glad I tried it, because it does seem like it works for a lot of people and I would much rather do rituxan than any steroids. Hope that helps, and good luck to you and your daughter.

I been diagnosed with ITP since 1994 and had the works for 6 weeks as an in patient and nothing worked so they removed my spleen. All okay for a while then over time I found I seem to be okay for 18 month or so and have drops.

My usual treatment had been prednisolone along with IVIG. I did have reactions to IVIG with mini temp rising and anemia issue which through full blood transfusions and off IVIG would sort themsevles out.

This year - a different consultant as the last one retired and he thought my platelets responded well to steroids. They did until they were finished or tapered right down then the platelets would go down in succession.

So am now on my very first round of rituximab and yes I have my long term quelms about the infection issues especially with not having a spleen and on life long penicillin to deal with that. I had my first round last week and it was a breeze for me. I felt quite drowsy afterwards with the antihistimine I guess. I went home and slept well that night. But immediate side effects were none where as with IVIG I would often begin to feel the temperature quite quickly into it in reality - (looking back over time).

Am well aware today could be a different story and may or may not be as easy. Every chance it will be as easy. Yes it is scarey reading the infection issues but whilst I am more than aware I place them to one side. Whilst they are there, it does not mean to say everyone will experience every side effect. The scarest infection thing seems to effect those with very bad immune systems eg People with AIDS.

I have had my fair share of scary infections too as had meningitis and septic shock - stage worse than septicemia. As an adult I got through them somehow with childlike trust on health. I was born with hole in heart and had it repaired with a small hole still there and observed.

So I do understand the long term worries people may have with any treatment. My own faith helps me alot in more ways than one would first think off. My outlook of life etc is sound and have things sorted out in my mind but that doesn't mean I don't worry altogether. I just try to place worrying where it belongs and that for me is in the bin. But we do not all respond like that am well aware.

I hope your daughter sails through the treatment. If she has side effects at least the medical team will know how to respond. Not like being given antibiotics to take home and ring the GP when something different is happening and they try to tell you its your imagination or something like that. If anything happens whilst on rituximab or any of the treatments i find they are fast to respond. My temp started to rise on IVIG and was wheeled down to xray very fast. They don't take chances and really listen to us. I am UK and find the hospital team very good.

I hope I have been able to reassure you a little bit. It is understandable you are worried especially as you are new to it all at the same time. By the way I had a bone marrow biopsy very early days and they do that to rule out leukemia(s) - or they did in my case.

yes, I am wary of the infection risk with not having a spleen but I trust the team and I consider that sometimes risks are there. After all there is nothing more dangerous than crossing the road each time we do so, even at designated crossing places. But we do it without thinking about life chance risks. We do it because if we did think about risks we never get anywhere. That is how I told myself to relax over the infection risks. Just as likely to get knocked down crossing a road as to experience infection side effects from rituximab. that was my way of handling it

I about cried seeing how many responses and great information here.
Taylor (my daughter who is 18) started the Rituximab this past Wednesday and seemed to tolerate fairly well. Yesterday and today, she is very achey and has a headache that will not go away. We go back to the doc today for a count and continue for the next three Wednesdays on the Rituximab with IVIG the day before each treatment.

Taylor only first had symptoms August 1st of major bruises and the patechia. After a blood count of 3000 came back, she was admitted to the hospital and put on IVIG and 80 ml of Predizone. She immedately went to about 125,000 but within two days came back down to 7000. The last couple of weeks have been up to a high of 30,000 on IVIG and Pred and then immediately back down to around 7,000.

She is extremely tired, headaches and back aches. She did have a bone marrow biopsy to rule out any major monsters on top of this and came back negative for those cells. But definitely confirmed somehow ITP.

She is very emotional and scared....as are we, her parents.

I feel very fortunate to have found this site. Our "normal" is gone and it is nice to listen to others "normal" as well.

I hope and pray that this treatment can find her remission. It is her senior year in high school and already had to start late.....

I appreciate any feedback/support and will try to do the same for anyone else.

Cathy

I would also like to add that she feels an accelerated heartbeat to the point where that is all she can hear when she goes to sleep. Normal?

So your daughter is having weekly IVIG and is on prednisone with no real effect. That sounds awful for her and I wonder why they are keeping up with it.

I had the fast heart rate on pred too. Sometimes at night it would go so fast it woke me up and I'd go downstairs and sit and wait for it to calm down. It was scary and one of the reasons I don't take high dose steroids any more.

IVIG also causes headaches for some so that may explain those. I had IVIG once at diagnosis and it took my count up from 4 to 30 and they deemed that to be a failure and won't use it again.

Hope the rituxan does its stuff soon.

I had an extra fast, pounding heartbeat on prednisone. It would really bother me a lot at bedtime. (I used to think I would have a heart attack in bed!) The Dr heard it during an exam and commented on it too, and said it was normal.

See my story on Rituxan if you are interested. It's the one called "Repeating Rituxan after Remission" I was happy to have rituxan again knowing that it gave me my life back for over 4 years!

Hope your daughter does well!

Cathy - it does seem a bit like overkill on the treatments. If the side effects are that bad and her counts are not that responsive, it's not worth it.

Prednisone will make a person emotional....part of the package.

I was wondering. She goes for an IVIG treatment on Sunday. The doc will not be there but she will be at the Rituximab on Wednesday,,, I will ask if she can stop or taper the predisone. This is all so new to me so I am grateful grateful grateful for this input.
Cathy

Prednisone has to be tapered. Most people here agree that the treatments are worse than the disorder. Being pounded with so many at once is hard on a person. What are her counts now?

She was at 5,000 today and the doctor said she will stop IVIG since she is nonresponsive to it. She had her second Rituximab today so I am hoping against hope. I just don't feel comfortable with her going to school with that low of counts and the doctor said she could go and I am just sick about it.
I don't know.
Cathy

Cathy - how are her symptoms? Many of us have gone about our normal activities with counts in single digits. I know it can be scary.

Sheis very tired and her body aches all over but no bleeding from her nose or mouth. I am at a quandry.

I know you are. I have a daughter with an autoimmune disorder and I worry constantly. The problem is that autoimmune problems can go on for quite a while, but the world doesn't stop. If she can handle it, it's best to try to go about normal activities.

I have been on Pred for 5 weeks now and I feel my heart racing all the time! It causes high blood pressure and water retention so your heart is working overtime.

It can also raise blood sugar which can add to the jitters. Avoiding salt and sugar can help. Anti-anxiety meds can also alleviate that.

Just updating Taylor's status. She finished the four rounds of Rituxan and about two weeks ago, started a PrevPac. She had tested negative for H Pylori but her hemo said that sometimes you can have a false negative and she was having a couple other symptoms with a stomach ache and breath that she felt antibiotics could not hurt. She went from 3,000 to 29,000 last week to 113,000 this week. She goes back for a new count on Wednesday and we are hoping that it stays there. She did this before with Pred and IVIG but came right back down to 3,000. After reading lots of posts here though, I feel positive that the Rituxan will do better at least for longer. I am also happy that the hemo decided to do a PrevPac. I tested positive for H pylori about 15 months ago and from reading up, there can seem to be a connection there so it makes me curious. Either way, either drug, platelets up are a good thing.
Check back later.
Cathy

That's great! Keep us posted.

Just wondering about the school question? Did she go to school?

I was thinking that may be she could go half a day and see how she feels. Doing something normal helps us. But if she is achy too much may not feel like it too much. But she doesn't have to go all day etc. Just an option for you to think about though may be she recovered by now and is at school. If not let her go half a day and miss a day. Vary it so she gets to see some of her friends and do something familiar. Yes those of us with low counts do carry on where we can....

Before I even knew any of the rules because this site wasn't in exsitence in those days. I remember once I came out of hospital and next day was out leafleting for the local elections. I was bored for in myself I was well enough. If she wants to try school, give her that space though I am well aware of your concern with low platelets. She can try it and see how it goes.

The three weeks she stayed between 2000 and 7000, she seemed exhausted and had anywhere from 25 to 30 bruises on her body so the hemo and her father and I made the decision for her to stay home until she was above 10,000 for sure. The school in our district has you sign a three week homebound study where a tutor comes out to help with questions and give missed tests. Her counts went up two weeks into the three week contract but you cannot return for some state reason until the time elapses....but that is okay. It is giving her one more week to rest up and catch up....and hopefully (fingers crossed) she won't go that low again.
Cathy

Glad you had something arranged

ITP like anything else affects us all in different ways. You were right to keep her off school if she exhausted all the time. It wouldn't have been much fun for her. I was thinking more about the social side of school and mental health and wellbeing for keeping something routine and seeing her friends etc rather than educational side. After all there is so much more available these days to learn from home for a few weeks but it is better that your State has a home school tutor available and yes the extra week will help her to fully recover from the exhaustedness though she might find the first week back quite tiring just because she had a break per se.

Hope things continue to do well for you all xxx