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my journey, crazy Emily

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

10 years 1 month ago #50958 by Sandi

Replied by Sandi on topic my journey, crazy Emily

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.

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 1 month ago #50961 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

Thank you so much!

mac
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10 years 1 month ago #51210 by mac

Replied by mac on topic my journey, crazy Emily

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

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 1 month ago #51213 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

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.

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

10 years 1 month ago #51214 by Sandi

Replied by Sandi on topic my journey, crazy Emily

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

mac
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10 years 1 month ago #51215 by mac

Replied by mac on topic my journey, crazy Emily

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.

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

10 years 1 month ago #51216 by Sandi

Replied by Sandi on topic my journey, crazy Emily

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!

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 1 month ago #51217 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

It was hard to imagine a light at the end of the tunnel last January!

mac
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10 years 1 month ago #51218 by mac

Replied by mac on topic my journey, crazy Emily

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.

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

10 years 1 month ago #51221 by Sandi

Replied by Sandi on topic my journey, crazy Emily

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!

Taz
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10 years 1 month ago #51232 by Taz

Replied by Taz on topic my journey, crazy Emily

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!!

The following user(s) said Thank You: EmilyK

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

10 years 3 weeks ago #51395 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

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.

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

10 years 3 weeks ago #51400 by Sandi

Replied by Sandi on topic my journey, crazy Emily

SO happy for you! :laugh:

mrsb04
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ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.

10 years 3 weeks ago #51413 by mrsb04

Replied by mrsb04 on topic my journey, crazy Emily

Great news Emily

mac
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10 years 2 weeks ago #51464 by mac

Replied by mac on topic my journey, crazy Emily

Fabulous news!

The following user(s) said Thank You: EmilyK

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

9 years 11 months ago #51816 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

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.

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

9 years 11 months ago #51817 by Sandi

Replied by Sandi on topic my journey, crazy Emily

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!

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

9 years 11 months ago #51818 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

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

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

9 years 11 months ago #51819 by Sandi

Replied by Sandi on topic my journey, crazy Emily

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.

mrsb04
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ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.

9 years 11 months ago #51821 by mrsb04

Replied by mrsb04 on topic my journey, crazy Emily

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

The following user(s) said Thank You: EmilyK

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

9 years 9 months ago #52706 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

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.

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

9 years 9 months ago #52708 by Sandi

Replied by Sandi on topic my journey, crazy Emily

Still looking good although those are some odd inconsistencies!

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

9 years 9 months ago #52710 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

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!

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

9 years 9 months ago #52711 by Sandi

Replied by Sandi on topic my journey, crazy Emily

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!

mrsb04
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ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.

9 years 9 months ago #52716 by mrsb04

Replied by mrsb04 on topic my journey, crazy Emily

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.

EmilyK
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Diagnosed jan 2015 at age 50 with 13,000 platelets.

9 years 9 months ago #52718 by EmilyK

Replied by EmilyK on topic my journey, crazy Emily

Anne,
Hopefully it was just the cold. I do a feel a little like my own personal science experiment!

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