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TOPIC: Counts with Promacta

Counts with Promacta 5 years 8 months ago #37861

  • 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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Slammed - don't be envious. Empty nest is a horrible thing. My second daughter moved out four years ago. I was busy helping her move, painting and all that, plus working. Every day, I planned to go home and have a good cry but things kept coming up and I just didn't have time. Someone would stop over or call, whatever, but I wasn't getting my cry time. I avoided looking in her room.

Finally, three weeks after she moved, I went into her empty room, sat on the floor, and wailed for about two hours. When I was finished, I sat up, sniffed and looked around her room. The carpet was filthy and the room needed painted. I decided right then that I'd throw myself into redecorating that room and cheered up instantly. I redirected my thought process and distracted myself with the room. I got over the sadness, but each one that moves out leaves a hole in the home. It's never the same.

I hope counseling helps your daughter. It certainly can't hurt. Has she been tested for Asperger's?

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Counts with Promacta 5 years 8 months ago #37867

  • Slammed
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Vdeutsch85,

Thank you for sharing your story with me. It helps to know that with the right help, she can get better and be a happier child. It seems everything about her is difficult, the pregnancy, she was tested postive for Down's, but we did the DNA test, which came back normal. When she was a baby, she hated any kind of noise, we had to ride in the car in silence, no talking, no music, no dvd's...which my son loves. We can't take her anywhere or she would just cry bloody murder...so we as a family just stayed at home. She does not adapt well to any changes and everything has to be in order, in a routine. She is very "detailed oriented".

Sandi,

No, she hasn't been tested for Asperger's. I spoke to a couselor for an hour yesterday, and he told me that from what he heard from me and talking to my teacher, she's a "genius" or someone with a very high IQ...at this point, I'm just happy we made a step forward...

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Counts with Promacta 5 years 8 months ago #37868

  • 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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Children with Asperger's can have a high IQ. It's just a suggestion. I'm sure it will get sorted out with help. Good luck!

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Counts with Promacta 5 years 8 months ago #37876

  • Vdeutsch85
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Slammed,

I work with high functioning children with Autism. They do display many of the characteristics you are describing. One has to wear head phones to block out noise or else he gets very agitated. They need structure and routine. They thrive using visual schedules and checklists. They have challenging times discussing emotions and are socially awkward. One of my students has an IQ off the charts and two are average. I do ABA therapy and all three of them have come such a long way. They will eventually be able to attend school in a main stream classroom. I see students with Aspergers leading very normal lives. However, they thrive when given the proper tools, such as social groups and counseling for issues such as anxiety and OCD ( which often go along with the disorder)

I am not a doctor, but Sandi might be on to something here. It is def worth a shot to see a psychiatrist. If it is indeed Aspbergers, there is a wealth of information and resources out there. If it is not Aspergers, at least someone will be able to help you address both her needs as a child and your needs as a parent so that you can both feel better emotionally! :)

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Counts with Promacta 5 years 8 months ago #37877

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Thank you for all your priceless advice for dealing with my daughter. I feel lighter and hopeful! I hope that after several months of counseling that she improves. I can't wait to see the benefits of couseling and then see how we can help her to live a "normal" life and be able interact with her classmates and make lifetime friends.

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Counts with Promacta 5 years 8 months ago #37883

  • amberyard
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75mg and getting re count tomorrow.
diagnosed 4/12

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Counts with Promacta 5 years 8 months ago #37884

  • Slammed
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Good luck Amber! I have a good feeling that your count is going to be good. :)

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Counts with Promacta 5 years 8 months ago #37888

  • Vdeutsch85
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I second that good luck tomorrow! Keep us posted!

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Counts with Promacta 5 years 8 months ago #37889

  • Vdeutsch85
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Slammed,

I think it will be all about finding the right person to help your daughter. Given the right person she can def learn how to handle emotions, make friends and overall be a happier person. I am also here if you need to talk. I am a special education teacher who has worked with many kiddos so if you need anything or need any questions answered about anything school related I'm your woman!

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Counts with Promacta 5 years 8 months ago #37890

  • Slammed
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Vdeutsch85,

Can I please have your personal email address? If you don't, I would love to get your professional opinion. I don't want to bored people here with my non-related ITP issues!

Thank you so much!

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Counts with Promacta 5 years 8 months ago #37891

  • Vdeutsch85
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Absolutely! My email is vdeutsch85@gmail.com

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Counts with Promacta 5 years 8 months ago #37892

  • Vdeutsch85
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I want to share an inspiring quote . As you know I'm in avid dog lover and special ed teacher.i do think it relates to all aspects of life.
Attachments:

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Counts with Promacta 5 years 8 months ago #37895

  • jeffrey71
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I liked that one.

Jeffrey
The following user(s) said Thank You: Vdeutsch85

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Counts with Promacta 5 years 8 months ago #37922

  • amberyard
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37k today he said as long as it stays above 30k I will stey on Promacta.
diagnosed 4/12

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Counts with Promacta 5 years 8 months ago #37923

  • jeffrey71
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Amber!

Sounds positive! Now don't forget all of us! B) I am so happy for you!

Jeffrey

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Counts with Promacta 5 years 8 months ago #37929

  • amberyard
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I am thankful for everyone on this form, you all know what and how I feel. Its good to have people have your back with the same problems.
diagnosed 4/12

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Counts with Promacta 5 years 8 months ago #37940

  • Vdeutsch85
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Amber,

Yay that is great news!

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Counts with Promacta 5 years 7 months ago #38174

  • Slammed
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Had my CBC, my count is 32K (so, no glass of wine). Two weeks ago, it was at 22k. Hema is happy as long as it's above 15k. My daughter is doing much better with counseling and the stress level is decreasing! I'm definitely is not going to let crowd at the grocery stores get to me! :P

Have a great Thanksgiving ITP friends! Be safe.

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Counts with Promacta 5 years 7 months ago #38184

  • Vdeutsch85
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Yay! Maybe some pie instead! Have a great Thanksgiving! I'm glad your daughter is going to counseling! Things look like they are getting better for you!

I'm on 50 mg every other day since my count was 214. Having insurance issues that I will not bore you with. I do qualify for the GSK assistance program but may take a few days or even longer since it's thanksgiving week. All will be ok in end.

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Counts with Promacta 5 years 7 months ago #38185

  • Slammed
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Vdeutsch85,

When is your next CBC? It would be interesting on what the count will be.

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Counts with Promacta 5 years 7 months ago #38188

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A week from wed....I'm taking a week off from doc...,it will be interesting to see

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Counts with Promacta 5 years 7 months ago #38447

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I need some advise. I will be seeing my hema on Tuesday. I got my CBC done today, it's at 22k again. So, it seems like the past 6 weeks, I'm in the 20's or 30's. I'm still on 12.5mg Promacta.

My question is: should I increase my dosage to 25mg? Lately, I noticed that when I'm super stressed, my counts really drops. I'm ok with my count being around 20's-30's (I can live with these numbers).

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Counts with Promacta 5 years 7 months ago #38452

  • 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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I think you answered your own question. If you're okay with counts in the 20's and 30's, why change anything? Has your count been dropping lower than that? If so, what's the harm in raising the dose for a while to see what happens.

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Counts with Promacta 5 years 7 months ago #38456

  • Slammed
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Last weekend, I woke up and got a huge bruise (it was quite pretty, blue/purple) on my leg, then comes the petchiae on the arm. Next day, it was starting to fade, but then it appeared on my side. Usually, when this happens, I'm usually under 10k. I waited a couple of days to see what happens. I went for my scheduled CBC's today. The liver is normal. On Wed, the petchiae was starting to fade away, with no new ones appearing...so I knew my counts were going up.

I think my fear is that my body is adjusting to the Promacta...I'm trying to hold on to each dosage as long as possible...

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Counts with Promacta 5 years 7 months ago #38461

  • 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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It would be interesting to know what your count was when you had the bruise and petechiae. I'm saying this because I've been fooled by both symptoms several times and have had them with counts around 50k. I'm one who usually didn't have symptoms until under 10k or 15k.

As long as they are going back up though, that's a good thing.

I don't know if this is done with Promacta, but what about every other day dosages? 12.5 mg's, 25 mg's, 12.5 mg's, etc.....

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Counts with Promacta 5 years 7 months ago #38466

  • Vdeutsch85
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Sandi,

I am on 50 mg every other day. It's along story about how I ended up like this (fighting for the insurance to cover it) so it can be done. I was at 77 on wed so waiting to hear what doc will say as far as dosing goes. We had a huge storm today so probably won't hear back until mon.

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Counts with Promacta 5 years 7 months ago #38470

  • 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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Well, there's an option for you, Slammed.

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Counts with Promacta 5 years 7 months ago #38478

  • Slammed
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Sandi,

I will definitely ask my hema about your suggestion on Tuesday!

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Counts with Promacta 5 years 7 months ago #38528

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Had another CBC done today since I was at my hema's office anyways...and I was feeling pretty good since the petechiae faded...but the bruises were still there. I know bruises take longer to go away...and here is the shocker...count is at 53k! I was like...I haven't seen that high of a number since October! I haven't done anything differently other than eating red grapefruit, which I rarely eat...I seriously doubted it was the red grapefruits... :P Hama says he's happy, of course I'm excited...I'm staying at 12.5mg. He will not increase my dosage unless I'm under 10k. Next CBC's in 1 month! My goodness....that's totally unheard of for me!

I did ask him about the alternating the Promacta dosage..he says in his experience, it hasn't work. He says that it seems like the body needs a steady dosage or counts can drop really fast.

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Counts with Promacta 5 years 7 months ago #38532

  • 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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Slammed:

Your theory about grapefruit is possible. Many people don't know this, but grapefruit can interact with a lot of medications. I have no idea if it interacts with Promacta.

www.dailyrx.com/grapefruit-can-interact-number-medications

www.webmd.com/news/20121127/grapefruit-some-medications-risky

Great count, btw!

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