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TOPIC: my journey, crazy Emily

my journey, crazy Emily 4 years 5 months ago #47061

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Rituxan number three went fine. It took about three hours with no side effects. Platelet count was 176000 so I panicked over nothing. I have to say it was nice to be pleasantly surprised rather than completely disappointed. She dropped me to 50mg of prednisone starting tomorrow and then re test wednesday and friday to make sure there are no sudden drops. Trying to stay optimistic about the Rituxan. I know many of you have had great success and that is a club I would like to join!
Hugs
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #47062

  • Sandi
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Emily my friend! That means you spent time being sad and depressed for no reason! You'll find that doing that only wastes time that could have been spent being happy! Worrying won't change things anyway...

I'm glad that you got good news. One more to go!

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my journey, crazy Emily 4 years 5 months ago #47064

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Hi Emily

I've been reading your posts over the last few weeks and feeling your pain - I am a bit of a worrier about some things too and when it gets a hold its quite difficult to snap myself out of it.

I don't have ITP but my 16 year old son has had counts of around 10-20 for the last 6 years. I just thought it might be useful to tell you about his perspective on ITP. He sees it as being sometimes a nuisance, but never more than that. He never lets it stop him doing anything he wants to do, he doesn't worry about it and in fact, most of the time he rarely even thinks about it. I think he has had the benefit of being diagnosed when he was too young to worry about "what if's" and also of having very laid back doctors who have never really communicated that he was "ill" or that ITP was anything more than just a bit of a problem. ITP is definitely a part of him, but just a very small one.

Time and experience will definitely lessen your worry about things. You are already educating yourself really well about it and no doubt you've worked out that the overwhelming majority of people who have ITP are alive, kicking and living comparatively normal lives :-)

I really hope that the rituximab works for you, because a bit of a breathing space or even a permanent one would be lovely for you. But if it doesn't there are plenty of other things to try or not try and you really can get by quite nicely on a count of 30 or so.

Wishing you calm, Ali

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my journey, crazy Emily 4 years 5 months ago #47071

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Ali and sandi
Thanks for the words of encouragement. I am hopeful that a little less steroid will help me feel less depressed and emotional and more like me. I so much appreciate this forum to be able to "speak" about my experiences. My saint of husband can only take so much !
Hugs and with much appreciation.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #47082

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Emily..I am sure you will feel better as steroids drop. If I take more than 30mg a day I become a hyper manic insomniac ..down to 5mg a day at the moment and on a much more even keel but still having trouble sleeping.

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my journey, crazy Emily 4 years 5 months ago #47168

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Count dropped to 130,000 today from 176,000. I know that Rituxan can take some time to work so I am trying to be patient, but it is very hard. Monday is the final Rituxan IV.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #47249

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So I have now looked back at my numbers and have a question.
I was at 189,000 when I had my second dose of Rituxan and I was on 60mg prednisone.
It lookes like this:
3/2/15 189,000 (second Rituxan and 60mg Pred)
3/4/15 381,000 (60mg pred)
3/5/15 361,000 (60mg pred)
3/6/15 300,000 (60mg pred)
3/9/15 176,000 (60mg pred and third Rituxan)
3/11/15 136,000 (50mg pred)
3/13/15 99,000 (50mg pred)

My question, which I am not sure has an answer, did the Rituxan help me for three days and that is all? Is there still a chance it can work? Is this anyone else's experience?

I have the last Rituxan treatment on Monday, 3/16/15.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #47255

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No, Rituxan doesn't work that way. It takes a while to work and when it does, it will last from a few months to years. The only thing that is that temporary is IVIG. It is an odd thing to have counts like that, but I don't have an explanation. You're still fine, so all you can do is see what happens next. Yes, there is a huge chance that it will still work. This is about the time it can start working.

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my journey, crazy Emily 4 years 5 months ago #47261

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Well one more thing that makes me not normal. I think the doctor is perplexed as well but is being good about not changing course, at least yet.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #47269

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EmilyK wrote: So I have now looked back at my numbers and have a question.
I was at 189,000 when I had my second dose of Rituxan and I was on 60mg prednisone.
It lookes like this:
3/2/15 189,000 (second Rituxan and 60mg Pred)
3/4/15 381,000 (60mg pred)
3/5/15 361,000 (60mg pred)
3/6/15 300,000 (60mg pred)
3/9/15 176,000 (60mg pred and third Rituxan)
3/11/15 136,000 (50mg pred)
3/13/15 99,000 (50mg pred)

My question, which I am not sure has an answer, did the Rituxan help me for three days and that is all? Is there still a chance it can work? Is this anyone else's experience?

I have the last Rituxan treatment on Monday, 3/16/15.


Emily, those are REALLY frequent counts. You're bound to see some anomolies getting counts that often. It would be much more common to just get a weekly count on the day of your treatment, and then you wouldn't know about those higher counts.

I suspect a lot of us have counts that bounce around like that (I know I do). You may want to take a break from such a constant focus on the platelet count.

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my journey, crazy Emily 4 years 5 months ago #47272

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I was just about to say the same thing as tamar - having frequent counts make you focus on trends that are sometimes not really there xx

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my journey, crazy Emily 4 years 5 months ago #47273

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Good catch, Tamar. I didn't even notice that. It does seem like count overkill. I got counts once a week too and my counts were between 3 and 11.

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my journey, crazy Emily 4 years 5 months ago #47276

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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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I agree with Tamar...no need for such frequent counts. I have had rituxan 3 times. My counts were taken weekly and fluctuated alot!
Here is an example
10/3/2006 first rituxan treatment and steroid Count 10K
10/11 second treatment rituxan and steroid. 92k
10/18 third treatment. Count 252k
10/25. Fourth treatment. Count 137k

Next count 3 weeks after was 60k
2 weeks after that 160k

Then had remission for about 5 years with counts taken every 6 to 12 months and fluctuating between 390k and 190k

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my journey, crazy Emily 4 years 5 months ago #47284

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My doctor was concerned that my counts had been dropping really fast before so he was trying to keep an eye on things. I have dropped from the 300,000s to 11,000 in a few days. I really appreciate all the input. This group is so important to help me feel that someone understands!
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #47337

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Did my final Rituxan this morning. That went fine. Platelets dropped to 74,000 (from 99,000) on 3/13 which was 3 days ago. Much less of a drastic drop then was happening but I keep being hopeful that they will stabilize soon.

I am still on 50mg of prednisone which is way better than the emotional roller coaster i had on 60mg. This will be week 2 on 50 mg.

The doctor and I talked about a next line of treatment if Rituxan is not successful. He thinks we should try WinRho which is fine with me. I know the risks and have tried to read any posts to this discussion group. I remain optimistic that Rituxan will give me some remission but i love having a back up plan. What confused me was that he said it is a treatment given every 21 days. I thought i would get a shot and if there was no response in 2 weeks it did not work and that was the end of that option. Can someone enlighten me?

I also asked about Cellcept but he has never used it for ITP and was unaware of it as a treatment option. I would try NPlate before cellcept but again am looking for input from your collective wisdom.

Lastly, they ran the anti-platelet anti body test and i am negative on all. I do not know if that means i am more anti body mediated or more t-cell mediated. I know it is not overly helpful information and you can have both, but i seem to have lost how to connect the test results to the possible conclusion. Any input to set me in the right direction?

Thanks for your time.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #47338

  • Sandi
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Emily:

I've never really heard of Win-Rho having a time schedule like every 21 days. If it doesn't work to bring counts up at all the first time, it's probably not worth trying again. If it does get counts up, you only need it again when counts start to fall. It can last months for some people. It used to be given as a five minute IV push, but now it should be given as an IV and you'd need to be monitored for a few hours, If your doctor doesn't know that, I wouldn't be comfortable with him giving that treatment.

At this point in ITP Land, no antibodies means that you have T cell mediated ITP. However, as I've said before, there could be antibodies that have not yet been discovered or maybe he didn't run all of them.

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my journey, crazy Emily 4 years 5 months ago #47341

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I will definitely make sure he knows about the IV and monitoring. I read that information on this site and all other sites about the product and am prepared to have reddish urine from the red blood cells. Am i right that it takes about 2 weeks to see a response if one will happen?
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #47344

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Gosh that is a lot of counts Emily. I'm on the fostamatinib trial and only have counts once a fortnight

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my journey, crazy Emily 4 years 5 months ago #47347

  • Sandi
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Emily:

I had five weekly Win-Rho treatments after I was diagnosed and didn't have any red urine, even having had them so close together. (I don't know why my Hemo did that; I didn't know any better and allowed it). You might not have any.

I think the response generally peaks at 7 to 10 days. It's been a while since Win-Rho was discussed, so the response should begin after a few days.

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my journey, crazy Emily 4 years 5 months ago #47349

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I understand that, but the insurance company has not complained, i have a port so there is no discomfort and it keeps me a bit more sane. The doctor is 10 minutes from my office so it is pretty convenient. I would just like some stables results!
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #47355

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I know, but it takes patience, Emily. You have had an awful lot of treatments in a short time. None of these are good for your body. They take a toll. ITP can be a series of ups and downs and I know getting used to that is hard, but that's the way it is sometimes.

There is still time for Rituxan to kick in, so you might not have to go any further. If you do and if you truly just want stability, consider N-Plate next with a doctor who knows what he is doing.
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my journey, crazy Emily 4 years 5 months ago #47361

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EmilyK wrote: I will definitely make sure he knows about the IV and monitoring. I read that information on this site and all other sites about the product and am prepared to have reddish urine from the red blood cells. Am i right that it takes about 2 weeks to see a response if one will happen?


As the former WinRho poster child, I can tell you that I saw a response within 24 hours, with a peak at about 10 days. I was just looking back at 2003, when I found out for the first time that getting sick tanked my platelet count (my count was 3K on the day before I got WinRho in March 2003). It was 60K the day after the WinRho, and 400K by day 10. By the 3rd week it had dropped to around 100K, and for the next few months bounced around between 40-90K.

I wouldn't hesitate to get WinRho again, but I am very familiar with the routine. I also have a very healthy hemoglobin level, so a small drop was not a problem for me.
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my journey, crazy Emily 4 years 5 months ago #47459

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Platelets down to 40,000. She left me on 50mg Prednisone, I assume to see how low they might drop over the weekend. I was feeling pretty secure that at least the steriods work for me (as they did with Solumedrol IV shots), but now I wonder if that will work in an emergency. Luckily no symptoms (yet), other than the dots. We will see what Monday brings. My hope for a quick remission is fading quickly. We leave for England on Friday, March 27 so I also need to talk to the doctor about making sure I have enough Platelets for the plane ride.

Some day I won't be the eternal complainer. Thanks to those who are willing to listen.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #47465

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I am sorry Emily. I am just a family member of a person with itp and I know how frustrated I can get. I can only imagine how it must feel to be the person. We are supposed to go to Aruba in June. Do you know what is a safe count to fly and what precautions should be done for while you are away?

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my journey, crazy Emily 4 years 5 months ago #47466

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From reading this list, it seems like 30,000 is a safe number. I will confirm with my doctor on thursday when i see him (as if anyone has control of the number). Others have suggested a medical alert bracelet and knowing where the closest hospital is. Sounds like your sister is doing well though so hopefully she will keep her numbers for a long time to come. I hope her new doctor gives her more confidence.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #47467

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Actually, Drew Provan, the one you are going to see, has said that a person can fly at any count. Hopefully he can reaffirm that when you see him. It's coming up soon!

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my journey, crazy Emily 4 years 5 months ago #47469

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Emily, her counts are up but I'm still afraid it is the steroids. She went up the last time and crashed about 2 months after they stopped. It was a different steroid though and I'm holding out hope that it is working.

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my journey, crazy Emily 4 years 5 months ago #47470

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Thanks sandi for the information from Dr Provan. I am very excited to have the opportunity to see him!

Mac, i hope your sister's count stays up. I thought she was only on about 10 mg of steroid and she seemed to have an increase after her awful rituxan experience so i will be cautiously optimistic that it was the rituxan and not just the steroids.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 5 months ago #47476

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No she was on that steroid everyone calls Dex.

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my journey, crazy Emily 4 years 5 months ago #47478

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EmilyK wrote: Platelets down to 40,000. We leave for England on Friday, March 27 so I also need to talk to the doctor about making sure I have enough Platelets for the plane ride.

I don't know if I was in LaLa Land or what but I never questioned if I could fly with whatever my count was - we moved to Tokyo while I was on 60mg of prednisone, later to Hong Kong & I can't remember what my count was then but still on prednisone, flew on vacations to Thailand & China & Singapore, also on home leave via Egypt & Italy & London - I just went and never asked.

Good luck on your trip!

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