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  • Chad89
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  • Diagnosed with ITP in 2007 at age 18.
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3 years 7 months ago #69942 by Chad89
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Well I’m new to this group but unfortunately not new to ITP. First was diagnosed at age 18 in 2007 after noticing all the bruises and petechiae. Had a count of 7k and was treated with prednisone only which worked. After a few years it became kind of a distant memory and eventually something I stopped thinking about. Fast forward to last month and I guess it came back. Noticed bruising and went in to the er at night to have my blood drawn. Sure enough my platelets were in the 30’s. Saw a Hemo the next day and they started me oh high dose Dex. Did t work. Then they tried IVIG X2 which worked for about a week. I’ve been on 80mg/ day prednisone for the last two weeks and it doesn’t seem to be working. So this Friday I’m scheduled for Rituxan. Does anyone have a similar issue with steroids not working the second time around? Hopefully the Rituxan works. Not sure why it came back after 13 years.

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3 years 7 months ago #69944 by MelA
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What is your count on the daily 80mg of prednisone? Are you still on it? If it isn't working I'd want off of it!!
Your count is in the 30ks? A lot don't even treat until down to 20k (me, I prefer to be at a count of 60k). IVIg usually is short term.

I was told once we start making those antibodies that attach to the platelets we always make those antibodies.
I'm sorry your count is down again!

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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  • SusanMichelle28
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  • I was diagnosed with ITP in March 2012. I've tried almost every treatment under the sun. Nothing really works without creating a new issue. Just taking it all one day at a time!
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3 years 7 months ago #69945 by SusanMichelle28
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Hi!
Yeah, prednisone worked for me the first time only. Hasn't really worked since. One hematologist had me on it for 2 years straight! 80mg a day. Almost had myself committed after that. LOL Took a long time afterwards to recover from the steroid-psychosis I experienced.

I really hope the Rituxan works for you!! :) That is also my next thing to try. It's sort of my last hope.

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  • Chad89
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3 years 7 months ago #69946 by Chad89
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Yeah I asked the Dr if we could start tapering me off the prednisone and she said she will as soon as the Rituxan hopefully works. Yeah I’m in the chair right now getting more IVIG. Just to boost numbers until the next infusion. Just bummed that the steroids didn’t work this time. Especially because it’s keeping me from work and I’m a very active person. I’d be happy I think with any count sustained above 50k.

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  • Chad89
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3 years 7 months ago #69947 by Chad89
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2 years?! Yeah I don’t want to be on prednisone anymore. I couldn’t imagine 2 years of it.

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  • SusanMichelle28
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  • I was diagnosed with ITP in March 2012. I've tried almost every treatment under the sun. Nothing really works without creating a new issue. Just taking it all one day at a time!
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3 years 7 months ago #69948 by SusanMichelle28
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Yeah, it was terrible.
I hated it. I refuse to take again. Luckily my hematologist agrees and won't put me on it.
I hope you can get back to work soon. I am grateful that I get to work from home; because my baseline is 6k-12k without being symptomatic.

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  • Chad89
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3 years 7 months ago #69949 by Chad89
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I’m so sorry your count says so low. Have you tried Rituxan or nplate? Yeah I don’t think I’ll do steroids again.
Oh and Mel, I was at around 75k on prednisone but it started slowly falling.

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  • SusanMichelle28
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  • I was diagnosed with ITP in March 2012. I've tried almost every treatment under the sun. Nothing really works without creating a new issue. Just taking it all one day at a time!
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3 years 7 months ago #69950 by SusanMichelle28
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NPlate works awesome but it gives me crazy insomnia that ends up giving me terrible anxiety.
My hematologist is super hopeful for Rituxan.

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  • Chad89
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3 years 7 months ago #69951 by Chad89
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Yeah the side effects are almost worse than having low platelets. I hope Rituxan works for you. I’ll update on whether mine works or not.

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3 years 7 months ago #69956 by MelA
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Chad are you still on that dose of prednisone?

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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3 years 7 months ago #69958 by gozorakgogo
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my situation is a bit similar however I was diagnosed the first time this past July in the hospital with a count of 2. Prednisone only had minimal effects brought me up to like 12. Was on 60 mg a day and gained like 15 lbs in 7 weeks until I tapered off. The worst ever. IVIG only kept my levels elevated for like 5 days upwards of 44 and then back down to 3 and back into the hospital where they started the 4 weekly retux infusions along with the weekly Nplate injection which I still get every week. My levels have been consistently over the "normal" level of 150-400 with some fluctuations within that range for well over a month now. I had bad insomnia and hunger with Pred but no insomnia with Retux or Nplate. Just joint pain in my hips.

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  • Chad89
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3 years 7 months ago #69961 by Chad89
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Yes Mel but my hemo and I discussed it and she’s going to start tapering me off of it. I’m glad to here the Rituxan has been working for you Gozo. I’m hoping it works. Just not sure why this all came back after 13 years, what triggered it, or why it’s not responding the same way.

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3 years 7 months ago #69970 by MelA
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Good luck with the taper Chad - and with Rituxan, it may take a while for it to kick in is my understanding. I've been fortunate and have only had prednisone and Win-Rho. I do know what triggered my ITP back in 1989, unfortunately that hasn't helped knowing.

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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  • Chad89
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3 years 7 months ago #69971 by Chad89
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Yeah they said if it works it will take a while so they are doing IVIG in the short term. I guess I was lucky to have it gone for 13 years. Just wish I knew what to avoid. Or why the prednisone isn’t working this time. Count was at 48 today.

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3 years 7 months ago - 3 years 7 months ago #69976 by MelA
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With a count of 48 do you need the IVIg? Will you be off pred by the time you start Rituxan?

Chad you want to know what triggered mine and why it doesn't do me any good to know?
It was a gamma globulin injection given to me before my husband and I went to Tokyo to look for an apartment - his company wasn't going to let us go unless we each got a gg injection 1st (why? who knows since Japan isn't a 3rd world country). He did fine and I got ITP, symptoms showed up very shortly after the injection. And the kicker is, IVIg (which is gamma globulin) is a treatment for ITP and was being used as a treatment when I was diagnosed, but I hadn't heard that until a number of years ago.

Chances are you will never know what triggered your ITP - most do not know.

I just hope Rituxan works for you. Know you must be itching to get back on the job!

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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  • Chad89
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3 years 7 months ago #69981 by Chad89
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Yes it keeps dropping without it and the steroids aren’t working this time so they began the taper. Nervous about the Rituxan tomorrow though. Hopefully it works. Well it sounds like you got lucky that it’s been gone for so long. That’s awesome. Looks like it’s harder to treat for mine this time around.

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3 years 7 months ago #69983 by MelA
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Oh no no, my ITP is NOT gone - it has been with me since spring of 1989 & will be with me forever, my count goes up and down but I have not had to treat since 2002 which is fortunate. I do have side effects from the prednisone since I was on it over 3 years straight, my Hong Kong hematologist would panic when my count dropped & want my spleen so I stayed on pred until we got back to the States - guess the worst is the skin on my forearms is thin and if I bump an arm I get a nice pool of blood just under the skin or my skin tears.

I remember a man here from way back who had Rituxan - his advice was to drink plenty of gatorade I believe it was.
I hope all goes well, let us know!

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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  • Chad89
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3 years 7 months ago #69987 by Chad89
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Oh ok gotcha. Well it sounds like you have a good handle on it and a positive outlook which is inspiring. Had the first Rituxan today and feel ok.

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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3 years 7 months ago - 3 years 7 months ago #69988 by mrsb04
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Mel
I know exactly what you mean. I lather moisturiser on my forearms every day.

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3 years 7 months ago #70003 by MelA
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Chad it is great to hear Rituxan treated you well today! When is the next round?
I have tried never to let ITP keep me from doing what I want - the first thing shortly after diagnosis was our move to Tokyo then Hong Kong. There were times I even forgot I had ITP - never checked count before flying from HK to various wonderful locations, mentioned before the only thing I've stopped doing since diagnosis is skiing and that's because I wasn't good at it anyway. For a number of years I only had a count done once a year for my physical. Now I go every few months or if I feel my count has gone down. Being positive is 1/2 the battle.

mrsb I do the same with the cream - sometimes 2x a day because where I live it is very dry.
My son's puppy has given me some doozie tears on my forearms - she has long quicks so her nails aren't very short.
I also think pred may have had a part in the arthritis in my knees and right shoulder - breaking my left shoulder 2 1/2 years ago started the arthritis in that shoulder.

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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  • mrsb04
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3 years 7 months ago #70004 by mrsb04
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Mel
Having done 6 years of Pred I have no doubt I will end up with arthritis in my wrists after the garden mishap incident.

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3 years 7 months ago #70005 by MelA
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I hope you don't mrsb - it's a bear! I started arthritis in my right shoulder a while back but it isn't as bad as that in my now unbroken broken shoulder. Did get a steroid shot in the unbroken broken shoulder and oh wow has that made a difference, hoping for longer than 3 months relief but 3 months would be fantastic.

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
The following user(s) said Thank You: mrsb04

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  • Chad89
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3 years 7 months ago #70057 by Chad89
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So I had my first Rituxan last Friday and my Dr said my next one is on the 30th. So two weeks apart. She also said she’s only doing 2 doses. I’ve heard that sometimes people get 4 doses. 1 a week. Hopefully the 2 doses works.

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3 years 6 months ago #70065 by MelA
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I know nothing about rituxan - but back in the day it was 8 doses, then it went to 4.
Not sure I've heard of just 2 doses. Did you ask her why 2?

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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3 years 6 months ago #70068 by gozorakgogo
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I had the 4 Ritux infusion treatments over 4 weeks along with Nplate. The ritux ended in august but have been getting the Nplate injections every week since with my hemo adjusting the dosage based on my count that morning. It took a couple of weeks after my final Ritux treatment to see improvements but when they came I have averaged well over levels of 150 for about 8 weeks now.

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  • Chad89
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3 years 6 months ago #70083 by Chad89
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So today’s count was 98k. On Thursday it was 100k so it dropped 2. It’s been about 2 weeks since the IVIG and the one dose of Rituxan last Friday. My next Rituxan is this Friday. Hopefully it’ll work.

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  • mrsb04
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3 years 6 months ago #70089 by mrsb04
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Good news Chad. A drop of 2 is so negligible I would venture to say you have stability.

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3 years 6 months ago #70090 by sleev-les
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Chad89 wrote: So today’s count was 98k. On Thursday it was 100k so it dropped 2. It’s been about 2 weeks since the IVIG and the one dose of Rituxan last Friday. My next Rituxan is this Friday. Hopefully it’ll work.


That's great man. I'd love to be within a 2k variance. Hope it continues to hold for you.

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  • Chad89
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3 years 6 months ago #70121 by Chad89
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Had the second Rituxan on Friday and my count as of that morning was at 97k. Hopefully the numbers start going up after the second dose and hold.

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3 years 6 months ago #70126 by sleev-les
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Chad89 wrote: Had the second Rituxan on Friday and my count as of that morning was at 97k. Hopefully the numbers start going up after the second dose and hold.


Even stable at 97 is a great number. Keep us posted on your Rituxan outcome.

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