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Are you planning to attend the ITP conference in T

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11 years 1 month ago #46990 by bethieofva
Are you planning to attend the ITP conference in T was created by bethieofva
Hello all,

I am brand new at this, so confused and scared. I was curious about the conference being held in Nashville in July. I was wondering if it would be beneficial to travel from Virginia to attend. Have you attended before ? Any thoughts?

Thank you.
49 yo recently diagnosed with ITP.

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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11 years 1 month ago #46996 by EmilyK
Replied by EmilyK on topic Are you planning to attend the ITP conference in T
I am new to all of this as well. I think it would be great to attend the conference. Sine it is pretty close to where you live I encourage you to go. It seems like it would be so nice to have so many people with ITP and knowledge all in the same place.

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11 years 1 month ago #46997 by bethieofva
Replied by bethieofva on topic Are you planning to attend the ITP conference in T
Not really that close, I live in Yorktown, Virginia. It is a good trot away...day's drive. I have looked for a support group, but nothing here. I just want information, but I am gathering from my research their isn't much. Sure doesn't make feel good that the doctors are operating just as blindly.

Thanks. Beth
49 yo recently diagnosed with ITP.

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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11 years 1 month ago #46998 by EmilyK
Replied by EmilyK on topic Are you planning to attend the ITP conference in T
Beth
I totally agree. There are such limited treatment options with no way to predict what might work or for how long and all with significant, including lethal, side effects. It is quite the nightmare. I was diagnosed in mid january. I know that at least i feel better now that i have more information. In fact I am pretty sure I have more information then my doctor. I wish we lived closer so we could grab a cup of tea and chat in person. I have a great support system but still feel very alone. Amazing how a number at the doctor's office can make or break my day.

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11 years 1 month ago #46999 by bethieofva
Replied by bethieofva on topic Are you planning to attend the ITP conference in T
Emily, so do I. I have great husband, kids and extended family, yet I feel so alone. I think I am more confused, than scared. I feel the same about my number. I was diagnosed last month completely out of the blue. I was 13, ivig took me to 170, down to 83 and who knows come this Wednesday. I don't want to be addicted or focused on a number my life. I have got things to do. :laugh:
49 yo recently diagnosed with ITP.

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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11 years 1 month ago #47000 by EmilyK
Replied by EmilyK on topic Are you planning to attend the ITP conference in T
I was diagnosed at 13000 also. I have been as high as 500,000 and as low as 4000. Luckily, no bleeding episodes since the first nose bleeds that took me to the doctor in the first place. I am trying rituxan and am on 60mg of prednisone right now. I ahve my third rituxan iv on monday. Fingers crossed for some remission. I really liked my life pre-itp and would sure like to get back in that direction. Everyone says they will find something to help us so i am trying to focus on that positivity.
Many hugs

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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11 years 1 month ago #47003 by EmilyK
Replied by EmilyK on topic Are you planning to attend the ITP conference in T
Beth
One other thought in case it is helpful to you. I have a small notebook i now bring to every appointment. I have a chart of the date, my current meds (including dose), platelet count, weight, blood pressure, symptoms etc. I have another section with my questions and any answers i get (always dated). I wish i did that from the beginning. I had one course of IVIG, but did not write down when or my level etc. it is much harder to go back and recreate all of that.

Also i consult with a naturopath. I do not know that anything she has suggested has helps, but none of it hurts me and i do the meetings via phone and she is so calm and reassuring. It's more for my emotional support than anything.

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11 years 1 month ago #47004 by bethieofva
Replied by bethieofva on topic Are you planning to attend the ITP conference in T
I just found an ITP tracking app on iTunes. I too am keeping a notebook. I am literally for UPS to deliver a FIRE for me, so I can download. I hope.

I would love a naturopath. I need to see who is around here. Excellent idea. I have been reading up different diets and food changes. See, you are a wealth of information!
49 yo recently diagnosed with ITP.

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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11 years 1 month ago #47006 by EmilyK
Replied by EmilyK on topic Are you planning to attend the ITP conference in T
Wow an app for ITP. Who knew!! My naturopath consults all over the country and she actually seems really familiar with ITP. She found some information that eating mushrooms might help boost Rituxan treatment and sesame oil might increase platelets. So now we have mushrooms with every meal and i put sesame oil on my body before bed. It is relaxing and helps me think i am helping myself with more than toxins.

You can email me directly if you want by just hitting my icon. I would love to talk but i do not want to be pushy. It has been great having this conversation. Thank you.

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11 years 1 month ago #47015 by bethieofva
Replied by bethieofva on topic Are you planning to attend the ITP conference in T
I sent you an email.

Also, if you are on FB look me up!
49 yo recently diagnosed with ITP.

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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11 years 1 month ago #47018 by EmilyK
Replied by EmilyK on topic Are you planning to attend the ITP conference in T
Beth
I wonder if something is wrong with my email! I did not get your message. I sent you one as well so hopefully we can connect. I am not on facebook. I look forward to talking.

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11 years 1 month ago #47022 by bethieofva
Replied by bethieofva on topic Are you planning to attend the ITP conference in T
I just tried again. It came back. I was curious how you use your sesame oil.
49 yo recently diagnosed with ITP.

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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11 years 1 month ago #47023 by EmilyK
Replied by EmilyK on topic Are you planning to attend the ITP conference in T
Did you get the email i sent to you? I out the sesame oil on the inside of my thighs and inside of my forearms. She said that is where you put hormone creme because your skin is thin in those areas.

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11 years 1 month ago #47024 by bethieofva
Replied by bethieofva on topic Are you planning to attend the ITP conference in T
:laugh: Not yet...I just accepted your connection here. Great to know..going to try starting tonight. I originally bought for egg drop soup.
49 yo recently diagnosed with ITP.

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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11 years 1 month ago #47026 by EmilyK
Replied by EmilyK on topic Are you planning to attend the ITP conference in T
I am also taking 2000 mg of vit c, 1000 mg of L Lysine and 1500 mg of acetyl l carnitine per the naturopath's suggestions. Again, i have no idea if anything helps, but from the little research i have done, there is no toxicity at those levels.

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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11 years 1 month ago #47033 by EmilyK
Replied by EmilyK on topic Are you planning to attend the ITP conference in T
Beth
I sent you an email with my cell in case you want to talk some time.
Emily

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11 years 1 month ago #47041 by bethieofva
Replied by bethieofva on topic Are you planning to attend the ITP conference in T
Got it!
49 yo recently diagnosed with ITP.

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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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11 years 1 month ago #47043 by karenr
Replied by karenr on topic Are you planning to attend the ITP conference in T
I've only attended one--when the conference was across the bridge, in San Francisco, but I'm glad I did. It was great to be around so many people who had some idea of what we go through! I also liked the opportunity to talk with specialists. I didn't have as far to travel as you, but I think the conference helped me be more comfortable with my ITP.

You can also read all the reports from the conference, but that doesn't give you the same feelings.

Karen
The following user(s) said Thank You: bethieofva

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11 years 1 month ago #47049 by TGalbs
Replied by TGalbs on topic Are you planning to attend the ITP conference in T
I'm thinking about attending. I am going to be living in Cincinnati, so the drive shouldn't be too far...
The following user(s) said Thank You: bethieofva

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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11 years 1 month ago #47220 by EmilyK
Replied by EmilyK on topic Are you planning to attend the ITP conference in T
Beth
How are things going?
Emily

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11 years 1 month ago #47222 by bethieofva
Replied by bethieofva on topic Are you planning to attend the ITP conference in T
Sorry, I have been MIA for a few days. I have been busy with kids, work and doctors appt. I did to go to my hematologist and platelets now 157. I will take that. Sadly, the prednisone has made my blood sugars CRAZY! I am diabetic, but my sugars are really wonky now.

How about yourself?
49 yo recently diagnosed with ITP.

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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11 years 1 month ago #47250 by EmilyK
Replied by EmilyK on topic Are you planning to attend the ITP conference in T
Beth,
Thanks for responding! Your number sounds great, particularly since it is a nice increase since you first posted. Can I ask your dose of Prednisone and if you are on any other medications or treatments?
My platelets continue to drop and my mood goes up and down. I'm trying really hard to stay optomistic that a remission is in my not too distant future, but sometimes it is really hard.
Emily

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11 years 1 month ago #47310 by bethieofva
Replied by bethieofva on topic Are you planning to attend the ITP conference in T
Absolutely, I started on 100mg and now on 10mg. I hope my numbers stays stable or climb. I hate the steroids. They make me feel very disconnected.
49 yo recently diagnosed with ITP.

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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11 years 1 month ago #47317 by EmilyK
Replied by EmilyK on topic Are you planning to attend the ITP conference in T
Sounds like things are going really well if you are down to 10 mg with such good numbers. I totally understand feeling disconnected. I am also very emotional and unable to concentrate. I am on 50 mg and just the decrease from 60 mg has been helpful. Sadly my numbers keep declining not sure if i will have to increase again. Stay in touch.

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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.