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itp back after 18 month remission

  • dru
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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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13 years 2 months ago - 13 years 2 months ago #30767 by dru
itp back after 18 month remission was created by dru
Am in the hospital now with plt ct of 4. This is the lowest count I ve had since I developed itp in 2005. Rituan tx in August 2011 put me in full remission. I had no symptoms earlier this wk but woke up today covered in petechia and blood in mouth. My hema saw me right away and put me right in. I've had 60mg of pred. Hoping for the best am a bit scared and am feeling bummed out!

Guess I just need some hellos from other itp people. They kind of don't know what to do with me here but I wld not let them put an iv in, last time I had one with low plt I got a huge bruise and seeping blood.

Dru

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13 years 2 months ago #30769 by eklein
Replied by eklein on topic itp back after 18 month remission
If they don't bounce back up, consider Rituxan again - a bunch of us have had an even longer remission from the second dose. You can try only to infusions instead of four.
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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13 years 2 months ago #30770 by jeffrey71
Replied by jeffrey71 on topic itp back after 18 month remission
Hi Dru!

How you doing now? I can understand the feeling a little down. You perk up! You are where they can help you. They will get your platelets up in a day or 2 and get you back home!

Keep the faith and let me know how you are doing! Anything you want to talk about just let me know and I will do my best to keep up my end! :)

Jeffrey
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  • dru
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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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13 years 2 months ago #30771 by dru
Replied by dru on topic itp back after 18 month remission
Thanks Erica. My first rituxan was in 2005 and I was in remission till 2011. It does work for me and my insurance pays for it, I will probably go that way and maybe try the 2 weeks instead of 4 tho my doc was not wanting to do that last time. Thanks for the reply, it made me feel better and not alone.

Dru

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  • dru
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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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13 years 2 months ago #30772 by dru
Replied by dru on topic itp back after 18 month remission
Thanks Jeffrey ...your post gave me a big lift. I have always responded well to treatments. Prednisone, IVIG, rituxan. Thanks for reminding me of that, and hope to go home in a day or 2.

Thanks for boosting my mood and hope the pred is working, I hate the side effects, makes me crazy and I never sleep.

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13 years 2 months ago #30776 by jeffrey71
Replied by jeffrey71 on topic itp back after 18 month remission
Dru,

Glad you feel better! Pred keeps me up too! Every 1 to 2 hours all night long, usually after about 4 nights I get a good nights sleep then the cycle starts again. My cats love it, we have snacks! :lol:

Try not to worry too much, but I know how hard that can be. Anyway I've got your back! I go back to my doc on the 28th and we are going to see if the IVIG is lasting and what my options are going forward.

Greetings and best wishes for a speedy trip home from northern Indiana! Try to get some sleep and touch base later!

Jeffrey

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 2 months ago #30777 by Sandi
Replied by Sandi on topic itp back after 18 month remission
Sorry to hear about that, Dru. Thought you'd get another long remission this time. Try not to worry. You respond well, you'll be fine!
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  • dru
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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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13 years 2 months ago #30779 by dru
Replied by dru on topic itp back after 18 month remission
Thanks, my attitude is getting more positive now. They just have never crashed so quickly from no symptoms to this in one night before. I'm trying to think of anything different I have taken in the past week. But I guess could go crazy trying to figure out what causes this.

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  • dru
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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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13 years 2 months ago #30780 by dru
Replied by dru on topic itp back after 18 month remission
Not good news today as still at 6k after 60mg pred. They gave me pred 60mg again today and waiting for dr to decide whether to do IVIG today or wait 1 more day.

Dru

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13 years 2 months ago #30799 by jeffrey71
Replied by jeffrey71 on topic itp back after 18 month remission
Hi Dru!

I hope your counts continue to go upward! Sorry I have not dropped you a note until now but my wife and I just got back home from seeing our mothers. We check on them on the weekends and they live 100 miles away.

Did you get to see your doctor today? I would give the Prednisone a while to work. So far I have responded well to the IVIG. As a matter of fact I just got my bill for my infusion! I told them that at that price I should not be able to find most of my clothing and there should be 3 days that I cannot remember! LOL :unsure:

Keep us posted on your progress! There was some good basketball on TV today! My Alma matter IU destroyed Purdue! :) Always a good thing! Relax, rest, and read!

Keep me posted!

Jeffrey

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  • dru
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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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13 years 2 months ago #30804 by dru
Replied by dru on topic itp back after 18 month remission
Thanks Jeffrey. I'm still in hospital, had a plt transfusion yesterday afternoon. But good news this am as they went up to 17k! So I can go home today but discharge a bit complicated by snowstorm here in MA on the coast. my husband has 4 wheel drive but we live a ways from the hospital.

But it will be great to get home, my cats enjoy extra snacks with me too when I'm on prednisone. :)

So am feeling encouraged and will see my doc Tuesday to see how the count is.

I really appreciated your checking in, just what I needed to pick up my attitude.

Dru

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13 years 2 months ago #30810 by jeffrey71
Replied by jeffrey71 on topic itp back after 18 month remission
Hi Dru!

Go home and rest up! Everything is getting better now! I am very happy for you! I have some connections to the Boston area. It is a long story.... LOL

Anyway, stay in touch and keep me posted on how things are going for you.

Let me repeat! Yeaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa for you!

Jeffrey
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13 years 2 months ago #30844 by DTMEDIC
Replied by DTMEDIC on topic itp back after 18 month remission
Hi Dru...hope your platelets rebound quickly. Glad you can go home...take care of yourself!

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  • dru
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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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13 years 2 months ago #30863 by dru
Replied by dru on topic itp back after 18 month remission
Platelet count at 20k today, pretty much the same as Sunday 17k. I get to decrease prednisone to 40mg from 60. The doc said I can't go back to work until they are 70k! That seems a little harsh so we decided to discuss it at my appt next Tuesday after seeing what the counts are.

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  • karenr
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  • Diagnosed in 2000, at 59, after being on moderately high doses of NSAIDs for arthritis. Splenectomy and rituxan both failed (2004). Did well on prednisone till summer 2018--then terrible reactions. Promacta since 11-19.
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13 years 2 months ago #30870 by karenr
Replied by karenr on topic itp back after 18 month remission
Dru, is your work very physical? If you feel okay, I don't understand why low platelets should keep you from your job. As a teacher, I didn't ever need to miss school because of low platelets (even single digits).

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  • dru
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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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13 years 2 months ago - 13 years 2 months ago #30873 by dru
Replied by dru on topic itp back after 18 month remission
I am an occupational therapist and work in a public school with children who have special needs. It is pretty physical which I think would be okay, but a few of my students will get frustrated and bite or kick when they cannot communicate their needs. The doc has occasionally seen me bruised up from work when my counts are low.

This is our school vacation week in Ma. If my platelets go up to 30 I will probably get the okay to work next week if I can arrange for my assistant to see some of my less predictable little friends.

It is important to me to be able to work, I love my job.

Dru

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13 years 2 months ago #30891 by jeffrey71
Replied by jeffrey71 on topic itp back after 18 month remission
Hi Dru!

How are you doing?

Jeffrey

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  • dru
  • Topic Author
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
More
13 years 2 months ago #30898 by dru
Replied by dru on topic itp back after 18 month remission
Thanks for checking in, I'm feeling fine except for hyper from the prednisone. No bleeding symptoms but I don't usually get any when counts are at least 20k. Still cleaning my house and (carefully) picking up sticks in my yard left from big storm.

Hope you are doing well also!

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  • dru
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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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13 years 2 months ago #31099 by dru
Replied by dru on topic itp back after 18 month remission
Back to work this past week with counts at 148k on 40mg pred. That's a lot of pred for me, it is making me crazy! I have taken everything out of my closets today and put it all back in all lined up and neat.

Now cutting down to 20mg and back to doc on Tuesday.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 2 months ago #31110 by Sandi
Replied by Sandi on topic itp back after 18 month remission
I'll take some of that energy off of your hands! Hang in there gal!
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13 years 2 months ago #31120 by DTMEDIC
Replied by DTMEDIC on topic itp back after 18 month remission
So glad to hear your counts are above 100...thats awesome! Praying that they'll remain in check as you taper off the prednisone. Wish I had a LITTLE of your extra energy to clean out MY closets and stuff. HA HA Take care :)
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  • dru
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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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13 years 2 months ago #31152 by dru
Replied by dru on topic itp back after 18 month remission
Well I had a great doc appt today as counts have gone up to 327k! So I was really happy as they went up even with prednisone decrease...... Have not had that ever before.

So now I get to decrease to 15mg pred for a week. Still hyper and cleaning , wish I could share some of this energy and platelets too.
Hope to calm down soon and doc increased ambien to 10mg from 5 so maybe will sleep better.



Dru

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13 years 2 months ago #31176 by DTMEDIC
Replied by DTMEDIC on topic itp back after 18 month remission
That's really awesome news!! You've had a really rough time so that's great that you've had such a good response while tapering down your prednisone! Happy for you.
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