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Newly diagnosed

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11 years 11 months ago #37796 by Pattyjj7
Newly diagnosed was created by Pattyjj7
I was diagnosed with ITP on oct 22. Levels were 14 and I started presnidone 140 mg for 5 day. Then 120 for 5 days, decreasing mg by 10 every 5 days. Levels increased to 200. This week on 60 mg and levels have decreased to 48. Have to decrease presnidone every 3 days and be back in Dr office on mon for more blood work. Is it common for platelt levels to decrease while on presnidone. I have been really sick on this med.
  • 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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11 years 11 months ago #37798 by Sandi
Replied by Sandi on topic Newly diagnosed
Patty:

Unfortunately, yes, platelet counts often do drop as the dose is tapered. Some people get lucky and counts do stay up. Sometimes staying on a dose of about 60 mg's for a few weeks works better than starting at a super high dose (like you did) and tapering it quickly.

Once in a while, counts can rebound when you least expect it, so anything could still happen.
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11 years 11 months ago #37817 by Pattyjj7
Replied by Pattyjj7 on topic Newly diagnosed
Went back to Dr today. Levels dropped from 48 to 31 in five days. Doctor wants to start IVIG therapy. Was on presnidone for five weeks. Tapering off at 20 mg now. Any thoughts
  • 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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11 years 11 months ago #37820 by Sandi
Replied by Sandi on topic Newly diagnosed
IVIG is sort of just a rescue treatment. It can work to get counts up, but it takes a long time to infuse and doesn't usually last long....a few days or weeks. It's good for emergencies but not long term. Side effects can be bad at times. Ask for pre-meds and drink lots of water the day before and the day of.
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11 years 11 months ago #37956 by Pattyjj7
Replied by Pattyjj7 on topic Newly diagnosed
I had a port put in on Thursday. Had to receive platelets while getting port because of low platelets. Friday night noticed rash on upper inside of right leg. Could this be reaction to platelets. Also noticed small amount sod blood on tissue when I blow my nose. I have Dr. Appt Monday am. Should I call dr. Before then. This is all so new to me.
  • 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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11 years 11 months ago #37957 by Sandi
Replied by Sandi on topic Newly diagnosed
Patty:

What were your counts? What was the reason for the port?

It might be a good idea for a second opinion. Some of that just doesn't sound right.

The rash could be due to a platelet reaction, but it's possible it could be petechiae. I don't think you need to call the doctor about a small amount of blood unless you feel uncomfortable about it. Of course if it gets worse, you should bring it to his attention.
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11 years 11 months ago #37982 by Pattyjj7
Replied by Pattyjj7 on topic Newly diagnosed
The port is to receive IVIG treatment. I did call Dr. Yesterday. Ended up in ER. Count was 25 received 10 units of platelets and came home. The redness was due to low platelets. Today redness is still on upper legs and under right arm. Nose bleeds. Will see Dr in the am. Kinda of scared
  • 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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11 years 11 months ago #37984 by Sandi
Replied by Sandi on topic Newly diagnosed
Are you over 60 years old? I still think you need a second opinion.
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11 years 11 months ago #37985 by Ann
Replied by Ann on topic Newly diagnosed
Twenty-five is a great count!

If it were me I'd seek a second opinion from a doctor experienced in treating ITP. Your treatment so far has not been really typical.

Here's the latest international guidelines...

bloodjournal.hematologylibrary.org/content/115/2/168.full
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11 years 11 months ago #37986 by Pattyjj7
Replied by Pattyjj7 on topic Newly diagnosed
I'm 62 and have no idea who to get a second opinion from
  • 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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11 years 11 months ago #37987 by Sandi
Replied by Sandi on topic Newly diagnosed
In which area do you live? Maybe someone here can help you out with the second opinion.

Ann is right. Your care does not seem to be typical according to ITP protocol.
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11 years 11 months ago #37988 by Pattyjj7
Replied by Pattyjj7 on topic Newly diagnosed
Columbus GA area
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11 years 11 months ago #37999 by Rob16
Replied by Rob16 on topic Newly diagnosed
Perhaps someone else has a closer referral, but I would make the trip to Atlanta. My wife Ellen has been happy with her hematologist at Emory University (Winship Cancer Center). Emory also has a Clinic with a hematologist in LaGrange - Emory Clark-Holder Clinic - but I wouldn't start there unless someone can recommend the hematologist there (Dr. Noreen Khan) and I don't know how closely she is affiliated with Emory proper.

If you are interested in making the trip to Emory University, please e-mail me for further info.

You might also look for "amberyard" postings and contact her. She has LOTS of experience with Northside Hospital in Atlanta.

Good luck!
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11 years 11 months ago #38000 by Ann
Replied by Ann on topic Newly diagnosed

Rob16 wrote: You might also look for "amberyard" postings and contact her. She has LOTS of experience with Northside Hospital in Atlanta.

Good luck!


Amber's treatment has not been typical either. I'd look for a haematologist whose interest is non-cancerous conditions, who has experience with ITP.
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11 years 11 months ago #38001 by Rob16
Replied by Rob16 on topic Newly diagnosed
Ann wrote:

I'd look for a haematologist whose interest is non-cancerous conditions, who has experience with ITP.

I'm with you on that, Ann, but easier said than done! Ellen's hema does seem experienced with ITP, though her office is in Emory's Winship CANCER Institute. We were biased toward a University affiliation. The hema's recommended approach has followed current protocol, and she has been respectful of Ellen's wishes not to have a splenectomy, and to allow her platelets to drift lower than protocol before treating with Rituxan.

In any case, Patty, there is no substitute for studying what others here are saying, reading as much as you can, and being willing to put your foot down if necessary to get the treatment YOU are comfortable with.
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