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TOPIC: Newly Diagnosed

Newly Diagnosed 11 months 2 weeks ago #64443

  • hopp.maggie@gmail.com
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Hello,
I am 25 years old and was recently diagnosed with ITP. The diagnosis was a shock to me because I have lived my life with no major health problems. I found out about the diagnosis after developing petechaie, and then waking up the following morning with bleeding gums. I was scared, assumed the worst, and went to the hospital. It's a bit trickier for me because I am currently teaching ESL in China. I am here with my boyfriend, but besides that I am very far from any sort of a support system. I also don't speak very much mandarin so there is a huge language and cultural barrier when I go to the hospital. Anyways, they drew my blood and found that my platelets were at 27,000. From there, they insisted that I get a bone marrow biopsy. I did this all in one day (yesterday), and received the results today that I have ITP. I also developed blood blisters in my mouth, and I am now even developing petechaie on my face which is very upsetting to me. The doctor currently has me on prednisone, 3X daily. I will go back to the doctor in a few days to get my blood work checked again and to see if the prednisone is working. I have to return to work on Saturday, and I'm nervous because I work with very young children and my job requires me to be very active. I am currently debating if it would be in my best interest to return to America so that I can be closer to family and have more options in terms of treatment. I've done quite a bit of research on ITP but am still feeling very lost and in shock. I don't know how this diagnosis will affect the rest of my life, and if I will be able to continue teaching in China. Any advice would be greatly appreciated. I'm very grateful to have found a community where I can talk with people who are going through the same struggles. I would very much appreciate any information or advice you may have on stopping the development of petechaie and blood blisters, especially the petechaie on my face. In your experience, how long does it take for these symptoms to clear up, will the petechaie ever fade completely, and what would my count need to rise to for me to be symptom free? Thank you so much.

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Newly Diagnosed 11 months 2 weeks ago #64444

  • 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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Hi Maggie,
Sounds like you are managing very well despite the complications of being in China and not understanding the language. Hopefully you will respond to the prednisone as that will make a big difference. I have had petechia on my face, blood blisters and the other symptoms you describe. They will fade away when your counts start to go up. I worked for 18 years with young active children and was able to continue working most of the time. My hematologist recommended that when my counts were below 30k I could go to work but just do paperwork or meetings and not work with children. The students I worked with have special needs and when frustrated they would kick and bite which is why she made that recommendation. Other people on this site will give you more advice and I think it will be very helpful to you.
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Newly Diagnosed 11 months 2 weeks ago #64446

  • maria3132
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Hi Maggie,
Steroids are an appropriate first line of treatment, however, they do have risks about which you should be informed. Other therapies have other risks, but it's up to each patient-doctor team to weigh the pros and cons and decide on the treatment of choice. That's why I think it's very important that you're able to communicate clearly with your doctors.
If you come back to the US, would you have insurance? Life with ITP is manageable, and while you may want to think about teaching adults instead of kids if the kids take a lot of energy out of you, I can't imagine why you'd have to quit teaching. (If you were a professional football or hockey player, on the other hand, then you'd probably want to reconsider your career, given the risks of head injury.)
One thing I've found is that i've spent a lot of time researching ITP since my son's diagnosis, which has been disruptive to "regular" life. You may be the same way, or not, but just know that it's normal to have a period of learning and adjustment to your diagnosis, and that you may find yourself on a bit of a roller coaster in terms of your schedule, energy level, and emotional state. It will get better in time. Most likely, you will soon learn about various treatment options and understand that ITP is an unpredictable but manageable condition with which you are most likely to continue to live a very normal life. I would encourage you to read everything on this site and ask every specific question you can think of. This community is really supportive.
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Newly Diagnosed 11 months 2 weeks ago #64449

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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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Hi Maggie:

I'm glad you found us. Finding out that you have ITP can turn your world upside down, but most people live a perfectly normal life while managing it. It may or may not last a lifetime. Sometimes it's a one time thing and Prednisone gets the counts up and it's over. Sometimes Prednisone gets the counts up and they drop back down. You never know how it's going to go, but many people have remissions.

Prednisone can work quickly for some people. I would go from 3k to 125k in just a few days. You'll probably know if it's working or not by watching your symptoms. If they get better, it's probably doing the trick.

I'm surprised they did a bone marrow biopsy so fast. That's not normal procedure here in the US. Those are not normally done unless the patient is over 60 or the patient does not respond to any treatments. It's not usually necessary to diagnose ITP.

Prednisone can have nasty side effects so you might want to read up on that. We've all been there!
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Newly Diagnosed 11 months 2 weeks ago #64454

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Maggie I was the opposite of you - I was diagnosed shortly before we moved to Tokyo, from there to Hong Kong. I moved and was on 60mg of prednisone - that was in 1989 and I still am living an active life. I was at 11k platelets and dropping - put in the hospital, a bone marrow biopsy was done the next day. Prednisone isn't fun but it did keep my count good and I got off it when we moved back to the States 4 years later & have had decent counts since, only 1 set back after a tetanus booster - I did a very very slow taper so didn't have any side effects from the taper.

Where in China are you? What dose of prednisone are you on? Hang in there!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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