Itp 2 weeks

I am new to this forum and recently was diagnosed with ITP . First signs was 2 weeks ago with peticia. I had a platelet count of 3, two days in the hospital with 80 mg pred count went to 8 then dropped to 5. I met with hemotologist and was given IVIG treatment last Wed. They did a CBC this morning and my count is 326. I spoke to hemo this afternoon and he would like me to do 4 weekly treatments of Rituxin . This makes no sense to me. I would make sense to monitor me and if I start to crash then maybe the Rituxin, or is this something normal. I am 46 and have never had any health issue's.

I do not know of many doctors who would do a treatment at this high of a number. Is the doctor a hematologist that has experience with ITP?

Ultimately the choice to treat is yours. Did you ask your doctor why or what his reasoning was? Remember you must be your own voice.

He mentioned me being steroid resistant but it makes no sense to me at all. He is backing me off the pred by 20 mg foe the next few weeks but I just feel it makes more sense to monitor me first. From reading on this forum the Rituxin sounds like not much fun. The IVIG was bad enough. I just was wondering if anyone else has had these results and still had treatments being so new to ITP

This is a difficult spot to be in when newly diagnosed. You have no idea what will happen next. Rituxan can take 4 to 12 weeks before it works, so it makes sense to do it before counts drop. However, you could have had an acute episode and counts may never drop and in that case, Rituxan would be a waste of time.

IVIG is usually always temporary and counts usually drop within a few days or weeks (unless you are acute). I get what your doctor is trying to do, but it might be a bit premature. If your symptoms are not that bad and you aren't afraid of low counts, you could wait it out.

Agree with the others. I'd ask the doctor to wait a bit just to check that the count is going to fall back down before trying something as long term as rituxan. Even when it doesn't work to keep the count up, which is about 50% of patients, it still kills off the B cells which are part of the immune system and they don't start building up again for 9 months to a year, so it seems a bit of a risk if there turns out to be no need for it.

You also weren't on the steroids for very long, you may just be a slow responder. Not that I'd suggest you continue with them as they are a horrible treatment.

Talked to my hemotologist today and he agreed to let me go a week or so with monitoring to see if this will straighten itself out. We are backing off the pred slowly and I will have a blood draw on Monday. The worst part of all this is the unknowns, I guess after you get things into a bit of a routinethen it will be easier. I am really struggling with running a business and balancing out this ITP. His original thought was to do the Rituxin right away because of the lag time it takes to work, but I quess I need to see what my body is doing to help me first.

Beag:

I was able to keep working through it all and hardly missed any time. I don't know if you can do any of these things, but it cut down on the time I had to miss:

1. Got CBC's at the Dr. office during my lunch hour.
2. Made appointments with the Dr. at the end of the work day (4:00), so I only had to leave an hour early on occasion.
3. Made most treatment arrangements with the Dr. office over the phone at work.

Just some ideas....

Sandi, Great ideas but I work on the road every day in different locations and my hemo is 2 hrs away. I think once we get a handle on my condition it will get easier. Right now it is the unknowns. Keeping fingers crossed this is acute.

You may not need to have the samples taken by your hemo.
Any doc should be able to do that and tell you the results which you can discuss over the phone with your hemo.

Have other reasons for your low counts been ruled out?


Cheers,
Joerg

Being on the road would make things more difficult. Joerg has a good idea, and maybe you can try that in time. You can take a script to any Quick Draw place on your route; I'm sure there are a few things you can do to make things easier. You'll figure it out, and CBC's/appointments will be less as time goes on.

Just got my latest cbc back and platelets are at 387. I have fingers crossed it will be acute but I quess we will find out more as time goes on. The waiting with Itp is the worst .

That is great news!
I agree with you, it is really hard to wait between counts and wonder what is going to happen. It sounds like you have a very busy job, I always find that work is a great distraction from ITP issues.

Dru, work is busy and it helps if the counts stay good. If you crash it throws a big kink in the equation.

beagler wrote: If you crash it throws a big kink in the equation.

Usually, that only happens in the beginning. As time goes on, life goes on. It will get better!

Scheduling treatments can be hard when your job is busy. You will get used to it. Here is hoping your counts stay up and you wont have to treat again.

Bc test result was platelets at 266. Being new to this how long does it usually take to figure out a pattern. Is there usually a fluctuations in your platelet count or should they stay pretty regular. I have an appointment with my hemo on Monday so maybe I will know more.

Unfortunately, there is no pattern. Sometimes people stay up, sometimes they drop slow, sometimes they drop fast, it's different all the time. There is no way to predict it.

Your counts are great! This is the time when you try to forget about it and enjoy the time now!

I kept records of what I do when and what the corresponding counts where for a while, but could never establish a pattern for me. This does not mean there is none for you

Cheers
Joerg

Got a cbc today and platelets are 133 so off to meet with hemo Monday and see what the next step will be. The ITP sucks. You feel fine and all but they can not seem to fix the problem. I am not dealing well with the unknown. I was wondering how many people have just done the spleenectomy and what are the results afterwards. I just am sick of it and rhe stress is making it worse I think . I am no fan of all this medicine. How do you ever keep you sanity.

Beag:

You just need to give yourself time. Before you know it, you will realize that you can live a pretty normal life with ITP and wondering what your counts are is not the focus of your day. No one likes having ITP or dealing with meds, but you do what you have to do. There are disorders that can be much worse. If you feel fine, that is a huge plus.

As for splenectomy, some have gone that route. Sometimes it works and sometimes it does not. Sometimes it can seem successful initially, but counts can fall weeks, months or years later. AT that point, if you need to treat again, you can be more susceptible to problems. Using immunosuppressants can raise the risk of infection without a spleen. Using TPO's can raise the risk of blood clots without a spleen. Splenectomy is becoming less popular as a treatment choice as time goes on. If you do decide to have the surgery, it should be an informed decision. Here are some articles for you:

www.bloodjournal.org/content/121/23/4782.abstract?sso-checked=true

www.medpagetoday.com/MeetingCoverage/ASHHematology/12103

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

Hi Beagler,
Welcome to this forum, you've found the right place to get answers and just to vent. Trust me we all know how you feel right now. We've all been there, scared, not sure what to do, where to turn, the knowledge that you have an autoimmune disease ect..it will get better! And remember you are not alone! This website and forum have been here for me this whole time and it will be here for you as well. Ask anything on here and trust me you will get an answer.
A count of 133 isn't bad. Your counts will bounce around a lot when you taper off steroids. According to my Hematologist he says as long as the count is above 50 he says that is a safe zone.
As far as Rituxan, I've personally gone through 6 rounds of it over the last few years. And it has worked for me. But please go through the section on this website about treatment options. There are now several options open to people with ITP. So if you see one you like or have questions about ask here. As far as splenectomy, that is an old school last ditch effort that has fallen out of favor with most hematologists.

Thanks for the pep talk. It is much needed and I know it has only been a month but it seems like years at times. I am anxious to talk to the hemo on Monday. I am sure I will have more questions for everyone. THANKS.

Met with doc last Monday and my count was 178 which has been dropping but I am still on 60 mg pred so he wants me to start rituxin on Friday. I got my first rituxin Friday with very little side effects. 3 more to go and maybe this will straighten out. I was a little tired today but not too bad.

Your doctor is giving you rituxan with a count of 178 to start? Wow, that seems like a very unusual treatment decision.
Erica

Wow indeed.




.

Beag:

I gave this some thought before I posted, because it's hard feeling like you have to second guess your doctor. The decision of when to treat is a difficult one, especially for the newly diagnosed. You just want it all to end and throw everything at it, but sometimes ITP just isn't like that.

I can surely understand wanting to use Rituxan before counts drop, and hoping for a response so that you can get off of Prednisone. That makes sense. But the risks that come with these treatments can be worse than the lower counts. If your ITP turns out to be chronic, then you might just have years and years of treatments ahead of you and they do take their toll. Studies have shown for years that more people die from infection than they do from bleeding and these immunosuppressants can be nasty both short-term and long-term.

None of us can tell you what you should or should not do. These are your decisions. But I want you to be sure that these decisions are what you want and not just what your doctor wants. As someone else here said a few days ago, do not blindly trust. You have a right to discuss everything with him and set treatment plans and goals. You both have to be on the same page. Many doctors are not well versed in treating ITP and go by the old school methods. Those are not necessarily the best ways to treat ITP now. The best thing you can do for yourself is research and learn. Make sure the articles are credible and current. Over-treating ITP is more common than you'd think. There really is no reason to do that. Counts do not have to be normal for life to be normal.

I hope this works out for you and you get a nice, long remission. Sometimes that happens with Rituxan and a majority of people who are responsive get about a year. Some get even longer. We've all been where you are and believe me, in time, you will come to terms with it and realize that it's not as horrible as it seems now.

Keep us posted!

The reasoning behind the rutuxin with the high count was to hopefully nip thus before my count got to low as it takes time for the rituxan to work as my counts have been dropping by 50 every week. I am not sure it is the best thing to do but I am putting trust into the doctor. This is why I posted on here was to see what others had to say. I really thought that we would have waited longer but it did make sense that it was to prevent another crash. I have looked on here but every one varies so much. I am very open to suggestions that I can discuss with the hemo. I will get a cbc tomorrow to see if it is still dropping.

Seems kind of like chemo when you have no evidence of cancer, or drilling teeth with no cavities. Sure that could happen in the future, but it might not.
Erica

beagler wrote: The reasoning behind the rutuxin with the high count was to hopefully nip thus before my count got to low as it takes time for the rituxan to work as my counts have been dropping by 50 every week. I am not sure it is the best thing to do but I am putting trust into the doctor. This is why I posted on here was to see what others had to say. I really thought that we would have waited longer but it did make sense that it was to prevent another crash. I have looked on here but every one varies so much. I am very open to suggestions that I can discuss with the hemo. I will get a cbc tomorrow to see if it is still dropping.

Okay, since your are seeing your hematologist tomorrow, you might want to discuss the dose of rituxan that he/she has prescribed. There is a thread here on lose dose rituximab that has links to several articles suggesting a "low dose" is as effective as the "standard cancer dose" that has been used with ITP patients over the years. It's a little unfair for me to call it the "cancer dose," but it IS the dose that has been used to treat various cancers.

If you've already gotten a single treatment of that standard dose, and if you are inclined, you could discuss holding off on additional doses, or spacing them out further. I doubt there is anything magic about spacing the tx 7 days apart....other than the studies of rituximab with cancer patients used that dose.

I would not fault you for just going with the doctor's treatment plan, if you are comfortable with that. Many ITP patients have gotten the standard dose over the years, and there are lots of success stories here.

PS Did your count really go up from 133 to 178, or was that a typo?