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What is common first line treatment options

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9 years 5 months ago - 9 years 5 months ago #54388 by ConnieP
What is common first line treatment options was created by ConnieP
I was diagnosed with ITP in 2008, my counts always stayed in the 50's and I did no treatments.
I was on a yearly check up for the last 3 years and count was always in the 50's.

My annual count 5 weeks ago was 18. Counts since then were 24, 26 and then 18 again.
I have no physical symptoms other then I do bruise easily when banging into things but no unexplained bruising. I feel great and do exercise and do a lot of physical activities without any fatigue.
My doctor is pressing me to do treatment with prednisone.

Is this common practise to do treatments without any physical symptoms with a count of 18?

If so does prednisone have to be the first line treatment? I am not wanting to do prednisone, as my mother took this drug (for a different ailment) with very bad side effects and liver damage.

Would love to hear your comments
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9 years 5 months ago #54391 by eklein
Replied by eklein on topic What is common first line treatment options
Is your doctor a hematalogist? If not, I'd suggest hooking up with one asap.

Sometimes a jolt of prednisone can knock your platelets back to a higher level. It's the long term usage that is more likely to cause big problems.

A count of 18 is not good, but no symptoms is very good. Advice from an expert doctor would help. Some watch and wait at those counts, some treat.
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
The following user(s) said Thank You: ConnieP
  • 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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9 years 5 months ago #54395 by Sandi
Replied by Sandi on topic What is common first line treatment options
Connie:

The choice of treating or not treating is yours. Some people choose to watch and wait and that is a viable option. Prednisone doesn't have to be the first treatment, but it is the cheapest and the other options can be even worse.

You could discuss other options with your doctor though. You could also ask him to wait it out for a few more weeks and see what happens. Tell him that if you get to 15k or become symptomatic you'll treat, or some other type of bargain that you both agree with. Maybe ask him to start with a moderate dose like 30 mg's to see if it will bump you up. At this point, it doesn't have to be either his way or your way. Maybe you can meet in the middle.
The following user(s) said Thank You: ConnieP
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9 years 5 months ago #54398 by ConnieP
Replied by ConnieP on topic What is common first line treatment options
Hi
Thanks so much for your reply. It helps to know other opinions. I'm seeing my hemo doc tomorrow, will keep u posted. Again thanks so much for your input.
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9 years 5 months ago #54465 by ConnieP
Replied by ConnieP on topic What is common first line treatment options
Hi Sandi & eklein

I saw my hemo doc yesterday .. she suggested 2 ways to proceed instead of using prednisone.

One was 40 mg of dexamethasone for 4 days. She said main side effect would be insomnia (feeling extremely "wired") and heartburn. (I haven't researched this one yet)

The other approach is to wait and watch for a couple of months and re-assess since I have no symptoms or bleeding.

I have chosen the wait and watch approach for now.

do you know how the dexamethasone works?

And again just want to say how good it felt to communicate with people from the IPT world. Thank you so much, it meant a great deal to me.

Connie
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 5 months ago #54469 by Sandi
Replied by Sandi on topic What is common first line treatment options
Connie:

Dex is a steroid that is much more potent than Prednisone. I think your doctor understated the side effects a bit. Some people find the drug intolerable.

Watch and wait is a good option if you are comfortable with it. Keep us posted.
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9 years 5 months ago #54473 by Charlottelaughs
Replied by Charlottelaughs on topic What is common first line treatment options
Connie,
I'm new to ITP, and started the Dex treatment today, having done the Prednisone route in February and again last month. On day one, the symptoms of Dex feel to me about like day two or three of prednisone80mg (so, about the highest dose they usually prescribe). I expect it will steadily get worse, but I guess I'll just have to see. At this point I'm not sorry I chose Dex this time--but I've had lower counts than you, and have been more symptomatic.

I agree that the watch and wait option would probably be a good one in your situation, especially since it seems to be what you feel best about doing!

If you want to read my journey so far, I've received what I felt was really helpful advice from more experienced ITPers in the thread where I share my updates. It's called "diagnosed in February, finding my way." It's here in the newly diagnosed section.
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