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TOPIC: Rixtuxan versus spleen removal

Rixtuxan versus spleen removal 6 years 9 months ago #25979

  • ddinap@aol.com
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i am 34 and new to ITP. i was diagnosed in january of 2012. i had the stomach bug then had some skin moles removed that never healed. 5 days later the dermatologist took my CBC and my platelets were 40,000. they rushed me to the ER the next day and they went to 68,000. they seemed to be going up on their own and were 98,000 bfore i had any treatments. saw a hemeatologist and started 60mg of steroids that day and they went up very quickly to 350k! problem is i can't get off the steroids. ended up switching hematologists in may after having no success with getting off steroids and i don't want to be on them forever. new dr lowered my steroids and my levels dropped to 40K. went for my first IVIG 3 weeks ago and levels shot up to 150K in less than 48 hours. went down to almsot no steroids and 3 days ago got a call that my levels were at 10K and i had to go for emergency IVIG again.

now that we know the IVIG is not going to "reset" my system as we had hoped, i am faced with either staying on steroids forever, trying a one month cycle of rituxan (one infusion per week for 4 weeks), or having my spleen removed. none of these options really appeal to me, so i am trying to get advise from others who have this g-d awful disease as to what has worked and what gave the best results that lasted the longest. any ifo you could give me would be great!

at this point every time i get a cut or i blow my nose and see blood i have a full on panic attack and want to drive to the closest ER! i have been to the hospital so much that my 7 year old is looking at me funny and keeps asking if i am going to die...

also, is there anyone else that has no signs at all that there levels are low? i have a ton of energy, i chase 2 small kids around all day, and i run 4-5 miles a day. i don't even get the petickia spots. nothing at all, which makes it even more scarry...
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Re: Rixtuxan versus spleen removal 6 years 9 months ago #25981

  • Sandi
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Hello there. I'm glad you found us.

NOT having symptoms is a good thing. It means that your body can handle the low counts pretty well. Knowing that will hopefully make it less scary for you. People with ITP tend to have new large, sticky platelets that work well so even though you have less of them, they do an okay job. Having low counts is not necessarily a medical emergency. It is though if you are having serious bleeding.

I hope you have been reading the posts. You will learn a lot. I know there is so much to take in and that will take time.

As far as treatments, you do have several options. It's best to find out as much as you can about all of them before you make a decision. No one has ever really been forced to be on steroids forever. Eventually they move on to other options, go into remission or just stop treating. Having counts above 30k is alright. Counts do not have to be normal. That is usually the goal for most people, but it doesn't have to be.

IVIG is not known to cause remission or reset the immune system. It is pretty temporary for most.
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Re: Rixtuxan versus spleen removal 6 years 9 months ago #25986

  • ddinap@aol.com
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I am glad I found you as well. The last 7 months have been extremely stressful for me. I had never even heard ofr ITP before then. No one I know has ever heard of it either.

My first doctor never even mentioned there were other options aside from steroids, so I am jsut now learning of these other treatment options and trying to figure out what works best for me. RIght now I am leaning towards the Retuxan infusion. The side effects don't seem too terrible, and it is only 4 treatments. If there is even a chance it can put me into some kind of remission, then I am willing to give it a try. My doctor woudl be thrilled to get me to about 50K and stay there without the steroids. A few months ago that woudl have freaked me out, but now i would be ok with it too. My plan is to put off having my spleen removed for as long as possible. If it were a permanent solution I would be more for it, but it doesn't sounds like it would buy me more than a few years of normalcy, if it worked at all. I woudl rather keep my organs in place! I figure g-d put my spleen there for a reason...

Thank you for much for responding. Your words are very reassuring!
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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26005

  • Dean
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The first few monthe were quite stressful for me also. Never heard of ITP and I felt so alone. Just remember you are not alone and reassure your child that you are not going to die!!! I agree with your choice to put off the Splenectomy, which is pretty much an "old school" treatment for ITP. Once it is removed, there is no putting it back. Prednisone really is only a temporary treatment for ITP. Mainly to raise counts in a short amount of time. I have had two rounds of Rituxian treatments. First lasted 16 months, second is going on 3 years! I had a reaction on the first treatment of my second round, which was easily counteracted with Benadryl. I recommend checking with your insurance to see if they will cover it before starting Rituxian.

Good Luck!!
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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26044

  • ananta
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What Dean said! Yep, the first few months are scarey! But after awhile you appreciate that you don't have all the problems that the rest of the folks do at your hema/oncologist's office! Of course, I have had a pretty easy time of it once I got over my fear of Rituxan.

I had read the possible problems with Rituxan and decided that it wasn't for me! But I got tired of being put in the hospital every time my platelets fell below 6k. I finally agreed to try it. I got a 4.5 year remission! Last year my platelets went down again and I had Rituxan again. I have been normal ever since. My hema's next appointment is in a year. I am expecting to be fine for quite a long while.
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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26049

  • ELC1
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Just had spleen removed three weeks ago. Doctor was temporarily able to get my platelets high enough for surgery. 500 mg of predisone and IVIG shot. Platelets were 29,000 today. I'm on 60 mg predisone and taking the weekly Nplate shot. I was 43 when diagnosed Sept 2, 2010. After six months of treatments (predisone, Nplate, IVIG) went into remission. Then in April 2012 platelets were down bruising was awful again. Got down to 0 three times and hospitalized. It's been quite a roller coaster ride. The Doctor is wanting to try the drug Rixtuxan. He said it's an IV treatment once a week for four weeks. I'm afraid of asking about side effects. I can not stand the sweats and dizziness that can come with it. It does sound like it could help after reading some of the comments. It has been encouraging to read others ITP stories.
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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26050

  • jwest52
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I have received the rituximab treatment, and yeah its kinda scary. BUT pretty much what everyone else said its deff worth it before getting your spleen out i mean you really don't have anything to lose by doing the treatments and yeah the side effects during the first infusion suck..but your docs and nurses can do a good job of counteracting them
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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26053

  • ddinap@aol.com
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ELC1 - did the spleen removal not work? Or is it too soon to tell? I figured having the spleen removed would eliminate the rituxan, but not sure.

Thank you to everyone for the info on rituxan. I am leaning towards that next, though i have to say that the info the dr gave me about it scared the crap out of me. I didnt even want to read it all, especially the whole serum sickness thing that takes 2 weeks to show up. It feels like i am damned if i do and damned if i dont! It is good to hear that a lot of you had long term remissions on it. I think if it bought me a few years of being medication free that it is worth the risk. If they could get my prednisone to a low enough leel to avoid the long term effects of that, i would probably stay on it, but evry time they taper it to the lower range my platelet leels plummet andi end up with emergency IVIG, which thankfully i have no adverse effects to.

Right now i am just trying to take it one day at a time. And i totally already see that i am mich healthier than the other patients at the hema/oncology office. Sme of those people are really sick with no chance of survival and it does put the ITP into perspective for me. I am hoping it will be easier for me to accept and deal with it as time goes on. A remission would really be great. I would love not to have to be at the drs or hospital all the time and for my son to stop looking at me like something is really wrong with me...

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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26054

  • Dean
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All treatments have their risks and we all respond differently. It is a chance we take when dealing with a Health issue. I read more and more of people that have a Splenectomy and still have to have to treat for ITP as it did not work. Plus without the Spleen one is more likely to have serious or life threatning illnesses. I thought the same, there are people that are a lot sicker than me.
I am betting on the "positive" response Rituxian has for you, if you choose that treatment. "One day at a time", is some of the best advise we can give to those new to this "rollercoaster" ride.
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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26081

  • ananta
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If you are interested in a really long read, here are two threads from last year when I came out of remission. You will have to copy and paste into a new browser, I couldn't get the attachment to work:

pdsa.org/forum/6-general-itp-discussion/15958-im-back-i-see-sandi-is-still-here.html

pdsa.org/forum/8-natural-treatment-methods/15962-my-journey-with-itp-and-acupuncture.html?limit=10&start=10#16259

For me using Rituxan again and geting on with my life worked. Why spend time sick?

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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26085

  • Sandi
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DDinap:

I once had the choice between Rituxan and splenectomy. I chose Rituxan, and I did get serum sickness from it. Twice. Definitely not fun, but I survived. I am still glad that I didn't have my spleen removed.

Too many people end up having a splenectomy, only to end up using Rituxan afterwards anyway. That can really leave a person immunosuppressed. Or, they end up using N-Plate which can raise the risk of blood clots after splenectomy.

People don't always get a few years of being treatment-free. Sometimes, it's just weeks or months or no time at all.
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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26089

  • KittieG
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Ddinap - do you know your blood type? If it is rh-positive, you could try Winrho. It's another option before spleen removal. And I found it to be pretty non-eventful - I was able to get it done and go back to work. No sickness at all.

Rituxan was not for me - didn't work, and I felt like crap for about a month. But there are quite a few success stories on here, so it may be worth a try.
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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26105

  • ddinap@aol.com
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i am going to see the Hematologist today to plan our next course of action. I am going to discuss Winhro. he never mentioned it to me, whcih leads me to believe it may not be an option for me, but i am not sure. i don't know my blood type (i guess at this point i probably should).

than you to everyone for all the info you have provided! it makes me a little calmer knowing i am not the only one out there with this issue!

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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26130

  • karenr
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Just want to let you know, Ddnap, that many people have rituxin without any bad side effects. I had none. (Of course, it didn't put me into remission, either, but it was definitely worth the experiment.)
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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26131

  • ddinap@aol.com
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went to the dr today and my levels were 165K! i had IVIG last thursday (when they were 10K) and have been taking between 30-60mg of prednisone since then. dropped to 20mg prednisone today and going to see what happens. if the levels drop (as they did one week after my initial IVIG in June) then they will do Rituxan next week. the first time i had IVIG my levels went from 40K to 150K 2 days after the infusion. However, less than 8 days later (while also on 5mg prednisone) they were down to 10K. the doctor is not optimistic that my levels will stay where there are more than a few days, like last time. getting blood done this friday and next monday to determine if i definitely will start rituxan. at this point i just want something to work for more than a week!

i am quickly realizing that this disease is just as much mental as physical. the going from 100K to 10K and being rushed to the hospital really starts to take a mental toll after a while. i give a lot of credit to those of you who have been living on this roller coaster ride for many years! it has only been 7 months for me, but it feels like an eternity. i feel like my life is consumed by this right now and am just hoping if my levels fall again that i get some kind of remission with the rituxan.
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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26133

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Yes, at first it is as much mental as physical and very life consuming!! Every little thing that does not feel right you stres over wondering if Platelets are dropping. It does get easier.

Hope Rituxian works for you. Remember it will not necessarily work right away. It can take several weeks after the last treatment before results can be seen.
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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26173

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Hang in there ddinap!

It is a total emotional rollercoaster ride - that's why it's totally worth it to find a hematologist that you like and works with you and doesn't freak out. My new doctor said to me last week "do you feel ok? I mean, if you feel ok and you have no signs, I'm fine with that". The last doctor I had didn't even look at me as much as he looked at the numbers on the paper.

Likely there will come a day that you wont have to rush to the hospital, because you will know what "low" means for you. It's different for each of us, and knowing your own signs is part of the journey.
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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26186

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ddinap--what Kittie is saying is very true. The doctor seems to scare you more than the actual ITP at times. This was the case with me. My platelets would go all the way to 1 and at that point, the doctor wouldn't let me leave his office. I actually didn't feel that bad and didn't have many signs of bleeding. I think that if the doctor doesn't panic, you, in turn, will not panic.

Just try to hang in there; and, hopefully your journey will get better.
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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26221

  • ddinap@aol.com
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had my first round of Rituxan today. did ok for the first hour. once they upped the dose after that however, my throat closed up, it was hard to breath, and i started having chest pains. they stopped the infusion and loaded me up with IV benedryl, IV Zantac, IV cortisone, and some kind of IV anxiety med. I was ont those for 45 minutes before i could swallow again. once i could, they restarted teh rituxan and were able to up the speed 2 times until i was done, with no more issues. i was premedicated before the whole thing started, but i have been told i am going to be premedicated stronger next week.

they said my worst reaction would be the first time. has that been true for anyone else? sounds like the next 3 times should not be as bad. was a little scared when i could not swallow! never seen so many nurses and doctors come running so quickly!

also, i agree that having the right dr is very important. i am on my 2nd hematologist, and i only got diagnosed in january 2012. my first one was rude and unresponsive. her office staff was even ruder! i would have to call for 3 days in a row before i could get my platelets numbers. then when someone would finally call me i had ot pry the number out of them. they woudl just say "they are fine." and they woudl have the receptionist give me the results! i never spoke to a dr. occasstionally i woudl get the PA but not often. my new dr is great. i feel like he is young and very imformed of all the treatments. he has been working with me on everything. he calls me himself with my results. he even gave me his cell phone to call him off hours if i need to! it's amazing how much less stressed you can be when you know someone else is looking out for you as well!
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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26226

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My first 4 treatments went fine. The first treatment was started slow to see how I would respond. The other 3 were given faster. The first treatment of the second round I reacted the same as you did. This was after the dose was increased. It was Scary!!! No issues with the final 3. It definatly helps to have Dr's and Nurses that listen and care about what you are going through.
Hope Rituxian works for you!!

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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26250

  • DeeDee Marie
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A very informed doctor is really important on admistering these meds. Just knowing what they are doing makes all the difference in the world. I think it is always good to speak up and let them know you want to be heard.

We all wish you the best with your treatment and hope it works for you!

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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26322

  • ddinap@aol.com
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has anyone had any side effects to the Rituxan treatment?

i had my first last Tuesday and I had the allergic reaction where they had to pump me up with everything to get my throat to unswell. Wednesday i actually felt fine. but Thursday i woke up feeling like i was drunk and in some kind of altered state. i spent the entire day on the couch feeling dizzy and a little queasy. the next day i felt a little better, but still off balance. and today (Saturday) i still feel a little off.

the dr said it may just be from all the meds i got on tuesday. he said they gave me a lot of medication to stop the allergic reaction. just curious if this has happened to anyone else?

i am dreading going back for treatment #2 in a few days, especaially if it is going to take me 4 days to recover from each one...

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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26324

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i've had it done many yr's ago (8) and as i recall that is common, i remember felling the same way. The drug of choice now is Nplate! lucky me, going on 2 yr's now with weekly injections. I'm happy with anthing over 20k @ this point. My only advice is if you are on prednisone or dekadron, be very careful, Dr's have a habbit of raisng the amount because the standard doesn't work....needles to say after yr's of steriods i had cataracts so bad i coulnd see a thing. Now i have implants and the vision is 20/40, no complaints. If i had known and did more research i would have opted for something/anything other than steroids, not a fan of. It does get easier as you go through your treatments, that initial 1st shock does have a way turning the world upside down. i hope your next treatment goes a little smoother

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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26327

  • eklein
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It is most common to react to the first treatment and then not react to subsequent ones with Rituxan. So they might want to go a little cautious on the pre-treating - still pre-treat but not 'pump you full' because you might be fine.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26334

  • ddinap@aol.com
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until the Rituxan last Tuesday, i have been more or less symptom free from ITP. i have had some bruising, but it has all been from stuff where i know i walked into something or was playing with my kids and got hit with a baseball or something. no bruising that i couldn't place where it came from, no petichie, and no tiredness. up until the rituxan, i was running 5 miles a day and chasing 2 very active little boys around. even the day my levels dropped to 10,000, i had no signs at all. i had actually ran 5 miles about 10 hours before i had the blood test!
now i feel like i have been hit by a truck! i just went for a run and thought i was going to faint. i am trying to keep my life as "normal" as possible, but that does not seem to be working. i think that part of the reason i have had no symptoms from the ITP is that aside from the ITP i am in pretty good shape. now it seems even exercising and watching my kids is difficuly. i am not sure how people can get this treatment while working full time. i am a stay at home mom right now, and i have barely been able to manage that the last few days. my kids have watched more tv in the last 3 days than they have watched in the last 7 months.
i just cant shake the foggy feeling i have. it's almost like i am drunk. i wish i was!

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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26340

  • Sandi
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It might be the other meds they gave you. I only had Benedryl and Solumedrol and because of the Solumed, I felt great the day after Rituxan. I was full of energy and felt better than I did on a normal basis.

I did get serum sickness 3 weeks after the first treatment and was really sick then, but until that, I was fine.

I hope your next one goes better!

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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26352

  • DeeDee Marie
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I think we all feel different when we have these treatments. The Decadron made me feel the same way. I still don't feel like I did before treatment. But, I do force myself to workout and swim; otherwise, I think I would feel worse.

Good luck to you on your next treatment.

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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26364

  • ddinap@aol.com
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i do not feel like i did before the treatment yet either, and i am due to get my next one tomorrow! i keep feeling like i am having a hard time breathing, it seems to get worse right after i eat. the drs think i am having panic attacks (which i have never had in my whole life), but i find it hard to believe that i am imagining that it is hard to breath. ended up at the ER a few nights back because of it, but they also think it is all in my head. has anyone had any issues with breathing after treatment?

i so do not want to get this done again tomorrow. i am thinking it may be better to just take my chances with the prednisone. i have been on that for 7 months and have never felt as lousy as i do right now.

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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26374

  • eklein
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You might get good results from just the one infusion, there is some evidence that we don't need to 4 standard infusions. I had just two last time and have had a four year remission so far.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re: Rixtuxan versus spleen removal 6 years 9 months ago #26375

  • DeeDee Marie
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My personal opinion is that you need to pay attention to how you are feeling before you get the next infusion. Only you know exactly how you are feeling. I had minor surgery six years ago and the doctor used some form of Mortrin in an IV during the minor surgery. I didn't want to tell the doctor at the time, but I felt like my heart was being "squeezed" and could hardly breath. I made it through the surgery, but 3 days later I developed blood blisters in my mouth. And, it was 3 month later that my platelets fell to 7 for the first time.

Just try to analyze how you are feeling and try to figure out what is making you feel this way. This is just my two cents on the matter.

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