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Treatment?

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14 years 9 months ago #16704 by nelsonba
Treatment? was created by nelsonba
I'm a 31 year male and went to a physician for a routine physical in December (My first in over 10 years). They did a blood test and found a platelet level around 30,000. They had me come back about a week later and found that it was still around 30,000 so I was referred to a hematologist. Since then I've had counts at 120K, 90K, 70K, and more recently 30K twice about 3 weeks apart. My doctor now wants to do a bone marrow biopsy and put me on Prednisone. Is this reasonable at this stage? I'm very concerned about the side effects, especially since I've never experienced any symptoms. Should I get a second opinion?

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14 years 9 months ago #16705 by eklein
Replied by eklein on topic Re: Treatment?
Yes on second opinion - why not! Hooray that your doctor at least isn't wanting to take out your spleen already. If your counts are bouncing around so much, maybe they'll go back up on their own - if you aren't bleeding or at any special risk (skydiver, knife thrower, etc.) then watching and waiting might be a good plan. 30k is the level that many doctors use as a borderline for treating or not treating and it seems you are staying above the line.
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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14 years 9 months ago - 14 years 9 months ago #16707 by Tad Moody
Replied by Tad Moody on topic Re: Treatment?
What Erica said.

Why start messing with your immune system if you're not having symptoms??

I'd suggest a second opinion to make sure you really have ITP. A low count can be caused by a lot of other factors - chemicals, quinine, infections, etc.

Search the PDSA.ORG website to see what other things might cause a low platelet count, see if any apply to you.

Good luck!!

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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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14 years 9 months ago #16718 by Sandi
Replied by Sandi on topic Re: Treatment?
Prednisone is reasonable, but not necessary at this point. Some people choose not to treat until they have symptoms. If you're not, it's a judgment call. Monitoring is a good idea though.

The bone marrow biopsy is also not necessary, but can give you peace of mind.

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14 years 9 months ago #16723 by eklein
Replied by eklein on topic Re: Treatment?
Tad,
A low count caused by chemicals or quinine or whatever can still be ITP, but it might be an acute case that could go away if you address the cause. My ITP is 'caused' by lupus but it's still ITP - the I is for immune not idiopathic, it was changed about a year ago.
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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  • 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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14 years 9 months ago #16727 by karenr
Replied by karenr on topic Re: Treatment?
Did your doctor tell you what dose of prednisone he thought would be advisable?

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14 years 9 months ago #16728 by Dean
Replied by Dean on topic Re: Treatment?
Before I was given the ITP diagnosis I had a bone marrow biopsy to rule out other possible causes of low Platelets. All was negative so Dr came back and said, you have ITP. I thought what the Hull is that. I felt like an alien. Second opinion is always a good idea if you are not confident with the first Dr. Sounds like you are bouncing around a bit so I guess I would just watch for symptoms, bruising, petechi,(red dots on skin) unusual bleeding. Test again in a few weeks and go from there. Counts might bounce back on their own.
Good Luck

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14 years 9 months ago #16732 by nelsonba
Replied by nelsonba on topic Re: Treatment?

Did your doctor tell you what dose of prednisone he thought would be advisable?


Nope. He only said that he would start me at a high dose and taper it down over 4-6 weeks.

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14 years 9 months ago #16753 by nelsonba
Replied by nelsonba on topic Re: Treatment?
Another question: When my general practitioner did my blood work my level was 30,000 (when all this started) He had me come back a week later to test it again and it was about the same. Two days later at the hematologist it was 120,000. Does it make any sense that this would have changed so quickly?

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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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14 years 9 months ago #16754 by Sandi
Replied by Sandi on topic Re: Treatment?
Yes, it can change that quickly. It's odd that it would go up, but anything can happen in ITP Land.

Question for you - when your GP did the labs, did the sample get sent out? When your hemo did the labs, did he have instant results?

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14 years 9 months ago #16764 by nelsonba
Replied by nelsonba on topic Re: Treatment?
They were both instant results.

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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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14 years 9 months ago #16794 by Sandi
Replied by Sandi on topic Re: Treatment?
Hmmmm. Forget that theory. It's odd, but not unheard of.

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14 years 9 months ago #17084 by nelsonba
Replied by nelsonba on topic Re: Treatment?
Did the biopsy last week and got the results today. It was fine. Doc wants to start me on 40mg of Prednisone and hopefully taper over 4-6 weeks. They didn't do counts last week or this week. I still feel like I should get a second opinion as far as whether or not to start treatment.

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  • Melinda
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14 years 9 months ago #17088 by Melinda
Replied by Melinda on topic Re: Treatment?
Your doctor is starting you on 40mg of prednisone and a count has not been done in 2 weeks? I'd want a count done first!

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14 years 9 months ago #17089 by nelsonba
Replied by nelsonba on topic Re: Treatment?
I thought that was strange as well. I even asked about it today. He responded by saying he didn't think it was necessary. I disagree. I've already set up an appointment with another doctor and I'm going to forgo treatment until I see him on Thursday.

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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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14 years 9 months ago #17092 by Sandi
Replied by Sandi on topic Re: Treatment?
Good idea.

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  • Melinda
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14 years 9 months ago #17093 by Melinda
Replied by Melinda on topic Re: Treatment?
As Sandi said - good idea! Your platelets could have gone up in 2 weeks. I'm from Missouri, Show Me! I would want to know I'm taking that 40mg a day for a reason :)

I'm too lazy to go back to read the other threads - is this a hematologist or an MD?

Take care!

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14 years 9 months ago #17097 by nelsonba
Replied by nelsonba on topic Re: Treatment?
Hematologist/Oncologist

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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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14 years 9 months ago #17098 by Sandi
Replied by Sandi on topic Re: Treatment?
Not very thorough, is he? You have great instincts for a newbie. If you end up with some symptoms though, it wouldn't hurt to take it in the meantime.

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  • Melinda
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14 years 9 months ago #17108 by Melinda
Replied by Melinda on topic Re: Treatment?
That really surprises me that a hematologist wouldn't do another platelet count before prescribing.

Yes, of course if symptoms appear you need to do something.

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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.