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just diagnosed? 12 years 4 months ago #1431

  • ddunn
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First of all, what a great place to come and read. Thanks so much for all these wonderful posts.
I am newly diagnosed, scared, and searching searching searching for answers.

I went to hosp with high blood pressure and bad headaches, chest pressure and just felt yucky for about 2 wks.

During routine blood tests, they said my platelet level was 35,000.
They did blood work several times, started me on prednisone, and the next day i was up to 65,000. then the next day 95,000, and i was sent home.

I went to doctor 6 days later, was at 185,000...yahoo!! I thought.
They weaned me from 80 mg of pred a day, down to 75 for 3 days, then 70 for 3 days. Back today, and my count was 127,000! I was so upset that they dropped. I was hoping so bad for high counts, and that they would lower my prednisone a little more.

My red and white blood counts have been fine as well as my protein count.

It really scared me, as a year ago today my dad died from multiple myeloma, and in October, I lost my 55 year old sister to multiple myeloma..which is blood and bone cancer.
But the doctor said it wasnt hereditary, and she said my other blood cells would be abnormal......
Does anyone have any input, or can u tell me if it is a normal thing for your counts to go from 185 to 127 on 70 mg of prednisone a day?

Thanks so much for all of your insight. This has been a very comforting place to come.
Denise

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Re: just diagnosed? 12 years 4 months ago #1440

  • 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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Denise:

With ITP, there is no such thing as "normal". Everyone responds differently to treatments. Some people drop as Prednisone is tapered, some do not. Your initial response was very good. Keep in mind that this does not mean counts will continue to drop. They may go back up with your next CBC. Ups and downs are typical and just part of the disorder.

There is usually no quick fix for this, so you might want to strap in for the ride and try to go with the flow. As long as you can maintain safe counts (over 30), you are doing okay. Most people with ITP eventually attain remission, but sometimes it's not easy to get there and you might have to go through several treatment options. My advice is to read about the treatments, and don't be afraid to make suggestions to your doctor if you feel the one you are using isn't a good option for you.

In the meantime, stay here and learn. You will get a lot of advice; what you do with it is up to you.

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Re: just diagnosed? 12 years 4 months ago #1444

  • ddunn
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Thank you so much. Just reading here has been a big comfort. I lost my dad a year ago today to multiple myeloma, and lost my 55 yr old sister to the same cancer, so this has scared me..... I have been reading, and appreciate so much your expertise. I want to learn all i can, from you and so many others here. Thanks again!!

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Re:just diagnosed? 12 years 4 months ago #1453

  • julia
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Hi Denise, Glad you found this wonderful site! Take a deep breath and relax your going to be just fine! Sorry to hear of your dad and sister but dont for one min think you have the same thing. The pred surpresses your immune system so its not attacking the platelets as much. A lot of the time when you reduce the pred the immune system goes back to attack mode. Not all the time though some people get remmision from it.
I was on 60mg pred and if i tapered 10mg my counts went from 150k to 10k. I now take 50mg Azathioprine and my last count was 275k.
You have quite a good count without treatment, take it easy and try not to worry
Julia

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Re:just diagnosed? 12 years 4 months ago #1454

  • alisonp
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Hi Denise

I am the mum of a son with ITP.

I understand your concerns as my dad has myeloma and when my son was first diagnosed, I worried a lot about the connections too. However, my son's haematologist assures me that there is no link. I only understand myeloma a bit, but I think your doctor is right to say that other blood tests would show myeloma because I know my dad was diagnosed initially because of blood test results. Maybe you could try asking the doctor to explain your results in more detail to you so that you can see clearly that there is no problem with the ones that would show myeloma.

ITP is an annoying, irritating and nuisance illness, but as the other posters have said, a safe platelet count does not have to be a normal one. My son gets on fine with a count that varies between 20 and 100. He doesn't get treatment. I'm not saying that I don't worry about it, but I don't think he does very often. Try not to stress too much about it and don't let it take over your thoughts or affect your life in a way it doesn't have too.

Good luck with the treatment

Ali :)

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Re: just diagnosed? 12 years 4 months ago #1460

  • ddunn
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Thank you for your response. I think half the fear is not knowing......and it is people like you that lend your experiences that help those of us new. Thank you!

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Re:just diagnosed? 12 years 4 months ago #1461

  • ddunn
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hello. I came to the boards earlier and answered every post, and now they arent showing up!!!! Thanks so much for your input on this subject. I have been down and out worrying about it.
Before treatment i was at 35,000...so i guess 127,000 is better than that!

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Re:just diagnosed? 12 years 4 months ago #1462

  • ddunn
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Ali, Thanks so much for your input. Where does your father have his myeloma?
I am trying to read all i can, and educate myself on all of this, it is just still new to me, and a bit scary! But all of your posts and experiences help me realize i am not alone.
Thanks again.
I came to the board earlier today and posted several posts, and they arent here!!!!

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Re:just diagnosed? 12 years 4 months ago #1463

  • alisonp
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Hi Denise,

It must be very worrying for you to have had two members of your family with a rare disease like myeloma. I worry just about my dad having it. He had some treatment in early 2009 that put it into remission for a while, but it seems to be reappearing again according to his blood tests - so maybe another round of treatment coming up for him. He has problems in his hips and one of his thighs with it.

You need to remember that ITP is a diagnosis of exclusion as I understand it, so in order to have diagnosed it, your doctor must have ruled out everything else such as a cancer. If you are not clear about this, go back and ask again - its not good to sit worrying about things unnecessarily.

Its funny in a way because when Dad had his last lot of treatment it was when my son was first ill with ITP. Anyway, Dad had low platelet counts because of his treatment that concerned his doctor, but they were always above 30K or something, and my sons were 1K or 5K and nearly always under 10. Dad used to go and discuss my son's latest count with his doctor and being someone who mainly dealt with cancer, she could never understand how he was managing to walk around and go to school normally and everything with a count that low! He even played football (against my orders I hasten to add) through most of his very low counts and came out the other side - I wouldn't recommend that though!

The thing about ITP is that in most cases, it is a nuisance but you can just get on with 95% of your life without changing anything. Having gone through it with my son, I think it is really really important not to let it take over your life and your every waking thought. I know it is probably difficult now, but 6 months down the line, you will probably look back on this period and think how did you get that panicked about it. This board is really useful becuase there are people here who get on with ITP and life on a daily basis - and some of them have more problems than that too!

I hope that things go well for you with the treatment, and that tapering the prednisolone doesn't drop your counts too far - there are loads of other things to try if it does though

Good luck, Ali

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Re:just diagnosed? 12 years 4 months ago #1466

  • ddunn
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Thank you Ali. I do appreciate your post, and am going to take your advice and do my best not to worry about it. U are right, 6 months from now, i hope i will be saying to you....that you were right and there was no need for all this worry.
This board is very useful, and i take great comfort here and am learning alot.

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Re:just diagnosed? 12 years 4 months ago #1492

  • Bunnie
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I also have a sister with myloprolific issues and both her hemotologist and mine assure us that there is no connection. I've been dealing with ITP for over 16 years, 15 of them with counts in the 50K range and no treatment. I'm currently doing Winrho every 4-6 weeks and it's annoying to have to schedule weekly or biweekly counts and take the time for the infusions, otherwise I don't have any changes in my lifestyle.

It takes a bit of time to get your mind around the diagnosis and not panic at any symptomes, but you'll come to the point where you relegate it to the background as one more thing to periodically schedule and get on with enjoying life.
"I am an old man and have known a great many troubles, but most of them have never happened.\" — Mark Twain\\\\\\"Worry is a misuse of the imagination.\" — Dan Zadra

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Re:just diagnosed? 12 years 4 months ago #1501

  • ddunn
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i know you are right....but it is scary......i am trying to remain positive, and know i will feel better after i get over the original diagnosis and know more. thanks for your posts. They do help!!!!!!

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