Rituxan first treatment

I was diagnosed last month after some routine blood work (for insurance) showed my platelet counts were at 6,000. I've been on prednisone since then and my doctor tried tapering me once and I dipped back to 21,000. I had to get IVIG last week and have been waiting for insurance to approve my Rituxan treatment. It's been delayed three times already and we are tentatively planning on Friday now. The delays have made me more anxious. I'm 35 and have two small kids. My energy levels have been really low and the side-effects from the prednisone are wearing me down. I'm feeling a bit scared and anxious, and really just want any advice out there. I've read through some of the posts on here but any specific thoughts anyone has (that might relieve me worrying) would be greatly appreciated. Thanks!

ITP is a disorder that has no quick fix. I hate to say it, but patience is required. Most do get remission eventually and until then, you keep trying treatments until that happens.

I was your age when I was diagnosed with 3 kids, so I get the frustration. I just decided to keep life as normal as possible and that worked. I'm not saying it was easy, but it does get better. Treatment options are much better now than they were in 1998 when I was diagnosed, so that's a good thing for you. It can typically take a year or so to get remission so if it happens faster for you, you're ahead of the game! A month isn't very long at all in the scheme of things.

Many people have remission due to Rituxan. The infusions are uneventful for most. I slept through them and was good for work the following day. Hopefully, it will work for you and you won't have to think about ITP for a while.

Thanks for the response. I'm feeling hopeful in general; I'm just nervous about this treatment. Will I be tired this weekend? A bit flu-ish? Or back to good energy pretty quickly? I'm on break from work for the holidays and my kids want to play and I just haven't felt up to it the last few weeks between low energy levels and insomnia from the prednisone.

Everyone is different, but I felt great the days after the infusion. I figured it had something to do with the Solumedrol drip. I did have a fever one night after the treatment (the 4th, I think), but it went away by the next morning. In general, more people have side effects from IVIG than they do from Rituxan. Again though, everyone is different.

Side effects due to Rituxan mostly occur during the first infusion (not everyone) and are usually easily controlled by slowing the drip. There is also a side effect that can occur 14 to 21 days after the first infusion (serum sickness), so you have to watch out for that one. I had it twice and it is miserable.

Prednisone tapering can cause extreme fatigue, so once you get past that, you'll be better.

Another question...I saw when reading that some people have a port with rituxin. I thought it was the typical IV in the arm or hand. Is it administered through a port in your neck area?

A port may be necessary for cancer patients receiving Rituxan, but not for ITP. It's only 4 infusions and wouldn't be worth the hassle. It is usually given in the vein on top of the hand.

Hi- I have had Retuxin every four years for a decade or so. It is the only treatment that seems to work for me. The transfusions had no negative effect at first. Now they give me hives, controlled with IV Benadryl, but it is worth it. 4 years without transfusions or steroids is great! I try to take time off and avoid situations where I could get exposed to anything during and just following treatment. I have an 8 year old and avoiding germs is going to be very hard as a mom. Lots of handwashing and a good moisturizer are my recommendations.

Good for you! One thing though, sometimes allergic reactions can get worse each time you use Rituxan, so just be careful to stay on top of that. I hope your good counts continue!

I finished my four weeks of rituxan last Friday. All went well with them (I just got tired every time). My platelet counts went up to 52,000 two weeks ago but they are back down to 22,000 now. I have an appointment next week with my hematologist to discuss next steps, but I'm wondering if the rituxan can still kick in? I found some info online that said results could take 2-6 weeks from the beginning of treatment, and others said 2-6 weeks from the end of the treatment. But my doctor last week didn't seem confident that the rituxan was working. Thoughts?

I finished my Rituxan (Rituximab) treatment in March 2014 and had no side effects from it at all either during the 4 transfusions or in the time since. Unfortunately it did not have any effect on my platelet levels which in fact dropped to zero on the day of the last treatment. They say that the drug stays in your body for 12 months and can continue to have an effect during this time. I am due an extensive array of blood tests next week (more than the usual CBC) just to make sure that everything is OK. In the end it was only NPlate that made a difference to my levels and enabled me to go into remission before a splenectomy was required.

Ace:

It can actually take 4 to 12 weeks after the last infusion to work. Some people have even had a response after that. I didn't see any response until the day of the fourth infusion, and that is fast compared to some people. Counts went from single digits (week of third infusion) to 150k. Dropping during Rituxan is normal because it's not doing anything yet....it takes time to kill off those B and T cells. I wouldn't consider it a failure just yet. It doesn't hurt to discuss other options in case it doesn't work, but there is still time.

Thanks for that info! It's really encouraging. I'll keep my fingers crossed.

My numbers started climbing about eight weeks after my last Rituxan treatment - my hemo and I both believe that it seems likely this is what got my numbers to climb up and stay up. I have been around 200 since Thanksgiving. There is hope!

My family member is receiving her first treatment as I write this. They had to stop it for now due to her throat closing up. Is this something that is seen frequently and should they try again?

I wouldn't say it is frequent, but it does happen. Most of the time, they can up the pre-meds and slow the drip, and the the patient does well. It normally only happens during the first infusion but if it happens again the next time, I think I'd skip future Rituxan infusions. Studies show that two treatments can work as well as four anyway.

So after a three day event my family member finished her first round of rituxin. Her body only handles it at 25. If they tried to raise it she immediately had trouble breathing. At the 25 there were no problems. The Dr has scheduled each one for two days now. I just pray it works! Has anyone seen this level of difficulty? Is it any indication when it is so difficult that it won't work?

No, I haven't really seen that before. I would question continued use of the drug. There are other treatment options, so why risk life when the disorder you're trying to treat is rarely fatal? I've seen other doctors desperate to get that drug into the patient when they probably shouldn't have. A patient with ITP will likely not die if they don't get Rituxan.

The reaction has nothing to do with a platelet response. I had a different type of allergic reaction and Rituxan worked well for me.

I questioned it as well. The dr said everyone reacts differently and 25 must be the magic number. It still makes me so nervous. I don't want them to increase it again even though I know next time there could be no reaction.

Sometimes, these drugs can and do cause harm. In my case, the reaction that I had triggered widespread inflammation that is permanent. The trade off for platelets wasn't worth it.

Thank you Sandi, My sister met with the doctor yesterday after having side effects that included stomach issues and some blurry vision. She also has not been sleeping at all. He feels a lot of these side effects are anxiety related and sleep related, Her platelets rose from 39 to 234 from one treatment. He wants to try it again next week to see if her body adjusts. If not they will talk about other options. He is going to take it slow because he said this is the least invasive treatment option??? She does seem better today but is still very tired. Does that seem reasonable?

First, it's very odd to get a huge response the very first week. I'd question whether Rituxan was even the reason for that. Second, since her counts are up, is it even necessary to give her further treatments given her bad reactions? These are decisions that your family will have to make and I really wish you had the benefit of a second opinion before going any further.

I don't remember what else she has tried, but I don't consider Rituxan to be non-invasive when adverse reactions occur.

She did have a steroid used with the rituxan. Would that cause the big increase? The only thing she has tried is or steroids with no success. She seems to really trust this doctor. I'm the one with all the questions!?! He was trained by one of the best hemotoligsts in the state at UVA medical center. I just feel so torn. I don't want to keep being a nusance. I should also add that she has reactions to just about any medicine. She is very sensitive to everything even detergents

I think everyone questions every move they make with ITP because no one knows what the outcome will be in advance. All anyone can do is listen to what the doctor suggests and make a decision based on that. If she trusts him, you have to let her do that.

I don't know the best answer for her. I tend to err on the side of caution when it comes to meds. I too have had too many bad reactions. They are not always temporary. It comes down to benefit vs risk. Period.

Mac:

Every so often, a situation comes along that bothers me and causes me to lose sleep. Your sister's story is one of them. I feel very torn about what to say to you.

On one hand, we all have doctors for a reason. We depend on them to help us in the best possible way. We need them. Twenty years ago, we pretty much did whatever they said because we had no choice. Research was very limited as were treatment options. We relied on them to do what was best for us. Things are much different today.

I used to rely on and trust my doctors. I was able to research and make suggestions, some of which they agreed to and some of which they didn't. That was fine though, I felt that we were a team. It isn't so much the treatments chosen that bothers me (I could have refused any of them), it's the things they missed that became the problem. I have so many stories, but I'll tell you the one that is the most relevant.

I first had Rituxan in 2003. I had three treatments which went well....no reactions or side effects whatsoever. The day after the third infusion, I began to feel sick. I woke up that night with the worst joint pain I'd ever had. I couldn't even turn over in bed. I also had a horrible headache and some other symptoms. The next morning, I went to the ER. I repeatedly told the ER doctor that I was in the middle of Rituxan treatments and asked if that could have anything to do with it. He told me I had a virus and sent me home. I called my Hemo and told him what happened and he wasn't concerned. It took about 6 days to recover, but I went back for the last Rituxan treatment because no one told me not to. I thought I had to get every drop of those 4 infusions even though my count went from 3k the previous week to 150k that day.

Fast forward a year (2004)...counts dropped again. I decided to go for Rituxan again because I really didn't have any other options other than Prednisone for the 10th time or splenectomy. Nothing else worked. I got the first infusion and 6 days later, woke up in the middle of the night with the same symptoms, only worse. Went to the ER and a few hours later, my Hemo showed up and diagnosed serum sickness. He told me that I should never use it again. I've read about serum sickness and if you get it from a medication, you should never have that med again because subsequent reactions can be fatal. Serum sickness is a delayed allergic reaction. The first time you are exposed to a certain drug, it can take 3 weeks to have the reaction. The second time you are exposed to the drug, the reaction happens usually during the first week. I had the classic symptoms and there was no doubt in my mind that is what I had. Serum sickness is a listed side effect of Rituxan. They gave me Morphine and sent me home on Prednisone. That was my last pain-free day.... 11 years ago.

I had muscle and joint pain during all of that. Most people recover from serum sickness within a week or two, but I never really got better. The joint pain eased up some but I also began to get other symptoms. A year and a half after that, I was diagnosed with Lupus. The reactions that I had triggered it; I was fine before that second time and never the same again after that. Two doctors missed it the first time. If they had paid more attention and took it seriously, my entire life would be different now. I may have ended up with Lupus at some point anyway because I was obviously predisposed, but I always wonder if the diagnosis would have been prolonged or prevented if I hadn't tried to go for that second round.

The point is, I trusted and believed. I shouldn't have. Neither of those doctors know what those mistakes cost me. My Hemo knows I have Lupus but he has no idea how it has affected my life the past 11 years. I no longer work or go out socially, my daily activities are very limited and I feel as if I am just existing, not really living. Every year I get worse due to the illness itself and the meds used to treat it. One proper diagnosis could have made the difference. I should have relied on intuition to tell me that Rituxan was wrong, but I didn't. I wanted to believe that Rituxan was okay because I wanted to get my counts up. I didn't realize that that wasn't the biggest concern.

About a year after all of that, my Hemo walked into my room in his office with a smile. He handed me a list of medications that can cause serum sickness. He happily pointed out that Rituxan wasn't on the list. I think my eyes bugged out and my mouth hit the floor. Was he insinuating that because Rituxan wasn't on that list that I never had serum sickness? My immediate thought was that he had an incomplete, unreliable list. All he had to do was read the manufacturer's list of side effects. It's there.

Since that time, about 8 to 10 people on this Forum have had serum sickness due to Rituxan. Half of those people have been misdiagnosed and their doctors have pushed them to have further Rituxan treatments. I can recognize the symptoms immediately from descriptions; the doctors cannot. They cannot see what is in front of them and think the important thing is to get that drug into their patient. I get so angry about that!

The amazing thing about Rituxan these days is that research shows that ITP patients do not need all four infusions and they can use much lower doses to get a similar response as the old, standard protocol. Most doctors do not even know that. One or two infusions can work just as well if a person is responsive to Rituxan. So why do they keep pushing that drug so hard, even on people who have had bad reactions or whose counts do not warrant further treatments?

Your sister might be just fine next week. She might end up with no further problems and great counts for well over a year. But she could have that exact same outcome from doing absolutely nothing. Of course you'll never know the outcome from the path she doesn't choose, but this is the part where benefit vs risk comes in. What is the benefit from having subsequent infusions? What is the risk of having subsequent infusions?

Sorry this is so long. I just wanted to explain that sometimes, the big picture is worth looking at, not just the short-term goal.

Thank you for taking the time to explain your experience. Her symptoms have gone away except for the exhaustion and some face flushing. She was able to work a 1/2 day today for the first time this week. That has mainly been because of the exhaustion. He did tell her those are common side effects. I did read that about the medicine. He sounded as if he wants to try a second infusion to see if she responds any better. She did say that if the outcome was not better he would most likely would not continue. I just can't seem to find the information that shows when you should stop using this drug as far as reactions go before even trying infusion number 2. On her first day she couldn't tolerate the med even at a rate of 12. On Monday when she went back they were able to get it up to 25 without a reaction. Does that mean that she just needs to go slower than most people or does it mean she shouldn't have this medicine at all. I was curious when you stated her jump from 39 on Friday to 234 on Wednesday could not be caused by the rituxin. Would be it the steroids they gave her before the infusion? She was off her oral steroids for about 6 months. I hate that you are losing sleep but believe me I have as well. I should also add that she has tested negative twice for Lupus at this point but I assume that could change.

Mac, I hope you will take very seriously what Sandi has written. She is extremely knowledgeable and speaks from a lot of experience, far more experience than most hematologists out there. She is also reluctant to get between a patient and their doctor. Never before have I seen her voice her concerns so strongly and carefully and at such great length.

Sandi is also right that most, and probably all, of the benefit that your sister will get she has already gotten. The dosing of Rituxan is extremely excessive, and a good bit of research shows it. There is little benefit to more treatment with Rituxan, and a very real risk if your sister continues it.

Sandi, I knew you were biting your tongue. I am relieved that you decided to speak up.

Rob, I have valued her opinions so much. I have shared and shared but it is hard when it is not you that is is happening to. I am just a nervous wreck about all of this .

I know, Mac, I know. My wife is the one with ITP and I am the one who does all the research. Fortunately, she trusts my judgment completely, but I can easily imagine being in your shoes. My only advice is to do all you can, be respectful of her choices, and let go of the outcome. Easier said than done!

Mac - Yes, a person can acquire another autoimmune disorder at any time, just like a person can acquire cancer at any time.

I shouldn't have said that her counts were definitely not due to Rituxan. The rise could be because of Rituxan, but it is unusual. Anything is possible. I know she had steroids too and that may have done it, but it's also very possible that it didn't, especially if she didn't respond to steroids before. Sorry that I don't know, but none of us know what causes certain things to happen sometimes.

I have never seen anything that details when Rituxan should not be continued due to reactions. I would think that would be up to the doctor and I would hope that they are wise enough to know when enough is enough. I have seen some errors here as far as that goes, so they do sometimes tend to push the drug when they shouldn't. I do not know of any deaths due to that situation, but that is only because no one has reported any here.

It is not my place to second guess a doctor, but due to what I've seen here over the years, more is not always better.

Rob:

Yes, the tongue is all bloody and my teeth are ground to a nub. :blink: