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Newly Diagnosed with very low platelet scare 11 years 9 months ago #3431

  • MondayLori
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:ohmy: Three weeks ago, suddenly noticed bruising and rash along with gums bleeding when flossing. I had had a nose bleed two weeks prior that was longer than usual as well. Then one morning getting ready for work, I woke up with blood blisters in my mouth! I knew I had to see my Dr that day and saw my Rheumy (I have Sjogren's). She had had hospital duty that day and saw me afterwords. She said I was the sickest pt she had seen that day. She thought, without telling me at the time, that I was probably low like 20-30,000 and handed me a RX for Prednisone to get filled the next AM. Once she got my lab report she would call me and tell me how much to take. However, she got called from lab middle of night that I was at 2,000 and she had me go to the ER.

Next day labs still come back at 2,000, I get a Hemotologist in and he took control with what would happen then on. First Solu-Medrol, then win-Rho, then prednisone, then dexamethasone. Third day I went up to 3,000, fourth day 7,000 and then finally by the fifth day I reached 33,000 and was able to go home. :)

I am 52 yrs old and have been through much legal issues in regards to my life changing; marriage, finances, etc., thought I was handling it all [OK] and then this.

I have already tapered down to 30 mg of prednisone while going back on plaquinil to try and get my Sjogrens calmed down. The course of treatment also includes monthly pulse packs of dexamethasone. My hematologist seems extremely confident in what he does and he is very kind and organized at the same time. It has given me a good feeling especially since I am really in shock with this new diagnosis.

My college age son had to spend his Spring break in the hospital with me :( thinking that I was going to check out any minute. I also have a daughter who is a senior in H.S.. This whole world of ITP has to get registered into my thought pattern now and I need to change so many things once again in respect to how I look at life.

I look forward to hearing what others have to say about this disease and how they manage with the ups and downs of it, as I am sure I will be experiencing sooner than later over these next few months.

-Lori

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Re: Newly Diagnosed with very low platelet scare 11 years 9 months ago #3433

  • 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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Hi Lori. My suggestion is to read the threads. There are a few people who have asked the same question lately and the advice and experience is there.

You sure got slammed with a lot of treatments at once. That's unusual in a short time like that...you don't know what is working.

I can tell you that this is just one more thing that needs managed. You are alredy managing one autoimmune disorder, so you know that it can be done, although it isn't always easy. You can live a normal life with ITP - you just have to adjust to it and that takes time.

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Re: Newly Diagnosed with very low platelet scare 11 years 9 months ago #3438

  • Ann
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Hello Lori, I'd have guessed that with blood blisters in your mouth that you were under a count of 5. It would be very uncommon to have such symptoms at a count of 20 or 30.

I can't imagine being on both dex and prednisone at the same time. Good luck with that.

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Re: Newly Diagnosed with very low platelet scare 11 years 9 months ago #3441

  • MondayLori
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Hi,

I was under 5,000 for at least 3 days that I know of starting with when my Rheumatologist first did lab test prior to being sent to the hospital.

I was or am not on the prednisone and dexamethasone together at once. I was started on prednisone in hospital, then on dexamethasone, then immediately back on prednisone 60mg.
That was end of March. now down to 30 mg prednisone and when I do the pulse dex, I will halt the prednisone those 4 days, then return to the prednisone. Sorry for the confuction there. My platelets have been around 220,000, they just went down a little last lab test. I am kind of nervous on where this will go. From what I've read now, it's anybody's guess, just have to wait and see.

I hope I can continue to work through this. So far I have made it through 3 and 4 day work weeks. Next week I hope to manage a whole week. :unsure:

I am scheduled to do the pulse thing during the work week at the end of this month. I wonder what my mind will be like on this medicine again. In the hospital I just laid around so it didn't matter much then when I was on it.

Lori

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Re: Newly Diagnosed with very low platelet scare 11 years 9 months ago #3443

  • 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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Lori:

Although you may not be taking Prednisone and Dex on the same day, you are on them both at the same time. I've never, ever heard of that sort of combination. Stopping Prednisone for Dex? That is very unusual. What is your Dex dose?

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Re: Newly Diagnosed with very low platelet scare 11 years 9 months ago #3450

  • MondayLori
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20 mg twice a day

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Re: Newly Diagnosed with very low platelet scare 11 years 9 months ago #3451

  • MondayLori
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Sandi,

Let me tell you what I think the Doctor was saying to me about this treatment. He is an
Oncologist-Hematologist with 25 yrs experience firstly.

He is looking at my situation with Sjogren's (have had for 10 yrs that I am aware of)(Rheumatological Disease) involved as well here, and probably behind the trigger of ITP. He mentioned the role my lymphocytes play with this all and that the pulse dex treatments have shown to improve the odds in the long run with this type of issue. I will learn more as I ask more questions. My Rheumatologist is to talk to the hematologist this coming week. If they seem to be on the same page, I will most likely move forward with this as I am hopeful for some sort of success with these meds.

-Lori

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Re: Newly Diagnosed with very low platelet scare 11 years 9 months ago #3452

  • 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 do understand that you have other issues that might make the difference. That is just an awful lot of steroids.

Yes, Dex (even alone) has been known to cause ITP remissions according to literature. But you were already on Dex before ITP?

Quite a few of us have multiple autoimmune issues. Not much fun - I agree.

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Re: Newly Diagnosed with very low platelet scare 11 years 9 months ago #3460

  • hairball01
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A count of 2,000 may be misleading. When I was first diagnosed in 2004, the family doc phoned indicating a 2,000 count. But the reality: 2,000 was the lowest readable number on the equipment. We suspect the actual number was much lower but beyound the resolution of the test equipment. Saw a Hemo Doc later that afternoon and immediately started 80mg Pred.

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Re: Newly Diagnosed with very low platelet scare 11 years 9 months ago #3466

  • Ann
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Hariball, a count of 2 or a count of 1 or lower is not really much different and matters not here nor there. It's the symptoms that are important and blood blisters in the mouth is a reason to treat.

I've never heard of taking pred and dex like that. Being on them both at once is a very different regime. If it was the rheumatologist who prescribed it that way, I'd seek the advice of a haematologist before taking the dex if I were you. Let us know how it goes.

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Re: Newly Diagnosed with very low platelet scare 11 years 9 months ago #3471

  • hairball01
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Comparing symptoms is interesting and perhaps crucial. At the onset in 2004, I did not have any gum bleeding, blisters or any other overt signs of a problem. On a routine visit, I commented to my family Doc about how easily I bruised. She ran an CBC that morning and noted the low 2k count and sent me to the Hemo Doc that afternoon. Sometimes I wonder if a 2k count is realistic when the reality may be something approaching a "0" count. The more I read and search the web, the more I realize we all display different symptoms and react differently to the medications...... some work and some don't.

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Re: Newly Diagnosed with very low platelet scare 11 years 9 months ago #3483

  • Ann
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I don't understand what you're saying. There is not much difference between a count of 2 and 0. You'll likely need treating either way. What does it matter which it is?

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Re: Newly Diagnosed with very low platelet scare 11 years 9 months ago #3488

  • Sandi
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Yeah, I'm with Ann. You can't get much lower than 2,000. Under 5, it's all pretty much the same.

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Re: Newly Diagnosed with very low platelet scare 11 years 9 months ago #3519

  • MondayLori
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Hi Again,

My Hematologist has set this course of meds for me.

Everything you have mentioned here I will give some serious thought to and have my questions ready for when I get my labs done this week.

The side effects and withdrawals with the potency of the Dexamethasone is what I think worries me the most. After the four days of taking it, which starts next week, I will drop down to 20 mg of the prednisone. I just wonder what that will do to my state of being. :/

This is all so different, today makes almost a month since the inital onset of ITP in my life and I don't know that I have come that far yet in taking it all in.

My kids need me in their lives and I worry most about the count going that low again. But I won't let myself think about that right now.

Thanks for all your feed-back. I will get back to you soon.

Lori

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Re: Newly Diagnosed with very low platelet scare 11 years 9 months ago #3537

  • 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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Lori:

My kids were young when I was diagnosed with ITP. I've been under 5,000 a few times. It never once occured to me that I wouldn't live to see them grown. ITP is generally managable, very few people die, so I wouldn't make that a priority worry. You'll be there for them.

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Re:Newly Diagnosed with very low platelet scare 11 years 9 months ago #3543

  • Ispep671
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Hi everybody . Just new to this post. I was told I had Itp again after a seven years of remission. I am 45 years old . Its all new to me again. I had a very bad period and went to my dr for cbc . At that momemt my platelets were at 6,000 . Was rush to emergency room where I was given Platelet transfusion steriods and Gamma something. Stay three days and left with a count of 60,000 Its been two weeks and up and down. 60,000 ,30,000, 14,000 up steriods 60mg a day . Than up again 60,000 and lower steriods 40 mg.Its been a rollercoaster. I like to hear what has help peoples. I dont feel comfortable working while my platelets are all over the place. I feel in Limbo. any suggestions ?
LIZ

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Re:Newly Diagnosed with very low platelet scare 11 years 9 months ago #3547

  • hairball01
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Ispep; No suggestions, but possibly your sensitive to Pres. levels. I'm 68 and have been trying to taper off Preds for a couple of months. At 20mg, my count hovers around 150-185k. When I drop to 15mg and the count falls to 10-15k. Hemo Doc want to taper-off 1mg/week. But I will start Promacta next month and hopefully stop the Preds altogether. I wll be happy if I can just maintain anything above 30k, but the ups-and-downs are worrysome.

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Re:Newly Diagnosed with very low platelet scare 11 years 9 months ago #3550

  • Ispep671
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Thanks for your reply. yes its draining just thinking what your count next dr appt would be. I have not been to work because I am worry it would drop low. Its been two week since it all started. so we wait and see all it goes. thanks again Liz
LIZ

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Re: Newly Diagnosed with very low platelet scare 11 years 9 months ago #3556

  • sherrie1c
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I was just diagnosed with ITP with a count of 2, but in actually they said it was more like 1 1/2. It was quite a shocker to even think I had some kind of blood disorder, but the strange bruses over the past 9 months, getting sick easy and always being tired started to make sence and all come together. I'm on 20mg of pred. with it to decrease on thursday to 10mg. I'm kind of scared to see what happens as the pred. is eleminated. My count after gamma globlum was 539, 9 day's later is was 329, I just had a CBC today so I am anxious to see what it is right now. I see my Hemotologist for the 1st time next Tuesday,have no idea what he is going to do.
Sherrie C.

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Re: Newly Diagnosed with very low platelet scare 11 years 9 months ago #3591

  • Ann
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Ispep, what sort of work do you do? Most people can work okay with any count as long as it's not really heavy work. Don't let ITP stop you from living your normal life.

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Re: Newly Diagnosed with very low platelet scare 11 years 9 months ago #3596

  • Angel85
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I agree with Ann, i am in the middle of treatment and my platelets have been fluctuating since about november last year, but i have been going to work and trying not to worry. I make myself busy when i am at work, so i don't have to worry about it, my main concern when i am at work is to make sure i satisfy my customers needs.
You've gotta' dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.


Lauren

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Re: Newly Diagnosed with very low platelet scare 11 years 9 months ago #3604

  • Ispep671
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I work in a prek class. I travel for 45 minutes to hour to get to my job so its not near me. In my job I have 18 children which I am responsible for and I am always on the go.No sitting time or relaxing except of cause for lunch. I dont sleep as its is because of the steriods . So very disturb sleep. I am still bruising and occasionally blood in my mouth . And now I am waiting to see how my period goes. Tired most of the time. Trying to maintain a normal life since I do have a nine years old son and a husband . So I do have to maintain some normal life. Its only been three weeks so I guess I just have to see how it goes. Thanks for the reply.
LIZ

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