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Newly Diagnosed with very low platelet scare
- MondayLori
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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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- 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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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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- Ann
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I can't imagine being on both dex and prednisone at the same time. Good luck with that.
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- MondayLori
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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.
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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- 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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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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- MondayLori
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- MondayLori
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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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- 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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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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- hairball01
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- Ann
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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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- 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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- MondayLori
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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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- 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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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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LIZ
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Sherrie C.
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- I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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