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TOPIC: my journey, crazy Emily

my journey, crazy Emily 4 years 2 months ago #50958

  • 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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Good news, Emily! I am so happy for you! I knew it would all level out at some point. Too bad it took so darn long.

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my journey, crazy Emily 4 years 2 months ago #50961

  • EmilyK
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Thank you so much!
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 1 month ago #51210

  • mac
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Hi Emily,
I have been thinking about you. How are things going?

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my journey, crazy Emily 4 years 1 month ago #51213

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Mac
Thanks for thinking about me. I am doing well. Count was 92000 last monday. I do 25mg of promacta on sunday and wednesday and 12.5 the other days. Still getting tested weekly and seeing the doctor once a month. Luckily I have no side effects from the promacta and it seems to be working. I still look myself over every morning! Hope your sister is doing well. Again, thanks for asking about me.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 1 month ago #51214

  • Sandi
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I figure no news is good news! Emily has been quiet....

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my journey, crazy Emily 4 years 1 month ago #51215

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I'm so glad things are going well for you. My sister is still ok with the last count being 156,000. It is a drop but still okay for now. She goes for counts once a month.

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my journey, crazy Emily 4 years 1 month ago #51216

  • 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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Ha, Emily and I posted at the exact same time.

I'm so glad that Emily and Mac's sister are both doing well. I think both were going through a bad time at the same time. I said, "It will get better". See? It did!

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my journey, crazy Emily 4 years 1 month ago #51217

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It was hard to imagine a light at the end of the tunnel last January!
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 1 month ago #51218

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Yes, Sandi you were right! I agree with Emily..the light was difficult to see. You were all so helpful during that time. I'm just glad there is no more rituxan allowd for my sister! Those reactions were terrifying. I so believe what you said about the treatments being worse than the disease.

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my journey, crazy Emily 4 years 1 month ago #51221

  • 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 remember the days with the long tunnel. Been there! I know ITP seems horrible, but most people do get on track so it can be one of the better autoimmune disorders to get if you have to have one. Things are so much better now too with the newer treatments. Trust me on that one!

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my journey, crazy Emily 4 years 1 month ago #51232

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I haven't been on here as much lately. But I wanted to check in to see how you were, too, Emily. So glad you're doing so well!!
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my journey, crazy Emily 4 years 1 month ago #51395

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Count is 168,000 so the doctor reduced me to 12.5mg only, no more 25mg. We will try that for a month and see what happens. He is hopeful that maybe some day I won't have to take the Promacta every day. I am just glad to have things currently "under control" for however long it lasts and to be on such a low dose of medicine. Thanks for the support along the way.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 1 month ago #51400

  • Sandi
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SO happy for you! :laugh:

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my journey, crazy Emily 4 years 1 month ago #51413

  • mrsb04
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Great news Emily

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my journey, crazy Emily 4 years 1 month ago #51464

  • mac
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Fabulous news!
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my journey, crazy Emily 4 years 1 week ago #51816

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109000 today with no change of dose. Will stay at 12.5 a day. It has been as high as 197,000 on the same dose. Weird. Any way hoping it continues to stay over 50000 on this low dose. As you might expect, a bit worried that maybe my body has grown "tolerant" for lack of a better description and will need to keep increasing the dose to get the same response. I know the number is fine, just disappointed with the drop by half with no other changes of anything.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 1 week ago #51817

  • Sandi
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Emily! I would so love to meet you someday! :)

I, on the other hand, would feel relieved by the drop and would hope that it dropped more on that dose. I happen to like the 50k mark and wish I were there now, as a matter of fact. Don't get too hung up on 'normal'. Stick with 'safe'. You're doing great and you have a lot of leeway as far as dose goes. That should give you a lot of comfort....imagine being on 50 mg's right now and feeling this way!

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my journey, crazy Emily 4 years 1 week ago #51818

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I would love to meet you as well! Maybe some day we will be in the same place at the same time.

On the numbers, i agree that lower is better on promacta, just don't get why it drops so erratically without a change of dose. Oh well. Time will tell!

Cheers
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 4 years 1 week ago #51819

  • 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 wish there were an answer to that as well. There doesn't seem to be much consistency with these meds and that seems odd. If blood pressure meds worked like that we'd all be in trouble.

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my journey, crazy Emily 4 years 1 week ago #51821

  • mrsb04
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I wonder if we sometimes unknowingly come into contact with antigens which cause an immune system blip and that affects our counts.

Emily I know it is disheartening when count drops but I agree with Sandi on getting to a count of 50k, the aim of treatment is to keep level safe not normalise the count. Mine is 52 at present and I'm delighted with that.

Anne xx
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my journey, crazy Emily 3 years 9 months ago #52706

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I am now on 12.5mg of Promacta 5 days a week. I skip Tuesdays and Fridays. Last week my count dipped to 60,000 from about 100,000, which was fine with me. This week it is 210,000! I have made no changes in diet, exercise, supplements or Promacta. We will see what next week brings when I see the doctor.
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 3 years 9 months ago #52708

  • 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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Still looking good although those are some odd inconsistencies!

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my journey, crazy Emily 3 years 9 months ago #52710

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Sandi,
You would have been so proud of me. Last week the nurse kind of freaked out at the 60,000 given that it was a drop of half and said I should probably start taking Promacta every day. I knew I had no symptoms (other than a sore in my mouth that didn't want to heal) and used my willpower to stay the course of 5x a week and now look what has happened. We will see what next week brings!
Diagnosed Jan 2015 at age 50 with 13,000.

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my journey, crazy Emily 3 years 9 months ago #52711

  • 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 AM proud of you! Wow, that is huge for you. I'll bet if it ever happens again you will do the same thing without having to bring out the will power. It's a good thing you did stick to the same dose!

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my journey, crazy Emily 3 years 9 months ago #52716

  • mrsb04
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Good for you Emily, mine dropped suddenly last week too (hopefully just because I had a cold). I was told to up my N Plate dose but am giving it another week to see what happens as over the cold.

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my journey, crazy Emily 3 years 9 months ago #52718

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Anne,
Hopefully it was just the cold. I do a feel a little like my own personal science experiment!
Diagnosed Jan 2015 at age 50 with 13,000.

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