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new here... 11 years 10 months ago #1703

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  • newcreationchangingdaily
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Hello all,
My name is gretchen, I'm 45 years old and was diagnosed with ITP on 2/11/2010. I'm married to Greg and have 2 beautiful daughters ages 15 (almost 16!) and 13. As I'm sure you all know it's been a roller coaster since diagonisis.
It all started with "female" problems. I went to the ob/gyn because of it and while there I just mentioned that I bruised easily. He ordered a CBC and called me later in the day and said I had ITP and that my doc might hospitalize me! I was getting ready to go to work! What the heck was this!? Anyway......my doc didn't hospitalize me but did more tests, sent me to a hemotologist etc...etc... My count has been anywhere from 7 to 38. The 38 was after one of the 3 platelet tranfusions I've had. I was immediately put on prednisone, but it isn't working. Let me tell you....that medicine is evil! I HATE it. Just found out yesterday that I can taper off of it now and we're going to try Rituxan. Not sure how I feel about that yet. At least I won't have the side effects like the prednisone. Oh, and found out yesterday that my bone marrow is normal! What a relief that is!
So, for now I'm not sure what to expect. I'm tired of the bruises. ugh.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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Re: new here... 11 years 10 months ago #1706

  • ddunn
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i was diagnosed Feb 23, so i feel your pain!!! I have had the periods from hell. I am 52.
Did they do a bone marrow biopsy? I have not had that done. How did they determine your bone marrow was normal? What tests have they done?

All my blood work, only my platelets are abnormal. Everything else is fine.....
I go to the hemo tomorrow ....first visit since diagnosis, which was in the hosp. I went there for chest pains and high bp, came out with ITP!!!!
I would love to compare notes.

Denise

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Re: new here... 11 years 10 months ago #1715

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Hello Denise,
When I went to the gyn he gave me some provera so that is controlling my periods. Whew! maybe you should ask about it. Yes they did a bone marrow biopsy. They say the test is terrible, but it didn't really bother me that bad. The worst part is the numbing of the area. You can do a search online and get specifics. My husband was more worried about it than I was! I went to the hemotologist right away and he ordered it. It took two weeks to get the results. Longest 2 weeks of my life! The rest of my blood work is not normal. I have anemia too and all the other numbers are out of order too. Maybe that's why the ordered mine so quickly. I dunno. My hemotologist said I have a positive lupus anticoagulant too. Still trying to figure out that that means! Everything I've read so far says that that mean my blood can clot to easily! I dunno there either! I'm starting the Rituxan soon, so I'll have my list of questions ready for that!
Looking forward to talking with you more.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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Re: new here... 11 years 10 months ago #1723

  • 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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Gretchen:

Research APS (Antiphospholipid Syndrome)...that's what your Lupus anticoagulant is. 33% to 40% of people with ITP also have APS. I have also had the antibodies. It does mean that blood clots are possible, even with low platelets. Knowing that might make a difference in how you treat ITP.

Yes, Prednisone is evil....we've all been there. Sorry it isn't working. That's sort of a double edged sword though...you want it to work, but if it does, then that is what you get stuck on. I did it way too many times before I finally asked to move on.

Hang in there and stick with us. You'll learn a lot!

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Re:new here... 11 years 10 months ago #1753

  • juliannesmom
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Gretchen,
For the bruising, you might try extra Vitamin C. (The time released capsules are more palatable. The pills can be big, dusty, and too sour.) I don't think it ever improved my teen's counts, but it seemed to make a huge difference in bruising and petechiae. It is said to improve vessel integrity, to help prevent all those capillary breakages.
Norma

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Re:new here... 11 years 10 months ago #1757

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thank you for the info. I will research the APS. As far as I'm concerned, can't have to much info! Right? :unsure:
My feet are really bothering me today. Always cold, numb and tingly. My left ankle is swollen. I'm guessing it's from the prednisone because I never had this problem before taking that. I've not had a problem with bleeding, except for the female thing, but yesterday I noticed some blood in my nose. Not flowing blood just some stuck up in there. Gotta keep a watch on that. Still waiting on the doc to call about the new meds.
The sun is shining today, gonna be 60+. What a beautiful day!
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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Re:new here... 11 years 10 months ago #1773

  • Sandi
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I always found that information was great - knowledge means everything. Every once in a while I get to a point where I'm on info overload and it gets depressing (I also have Lupus), but it means a lot when decisions need to be made and you are familiar with options.

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Re:new here... 11 years 10 months ago #1836

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I start the Rituxan next Tuesday. Kinda anxious about that. Not what to expect. I've read everything from no problems at all to a risk of infections that can kill you! I do know that no matter what the outcome, I know my Maker and I know He's in charge, so it's all good! My feet are bothering me to the extreme. Getting the purple dots now so I know my count is low. It was 7 on Tuesday had the platelet transfusion Wednesday but I can just tell that they are down again. I bumped my shin on the bottom of a shopping cart today and had an instant bruise. Ugh. I'm so tired of seeing all the bruises. It gets overwhelming sometimes. I'm grateful I don't have the bleeding part of this though.
I'm concerned about going back to work too. I work as a server in a restaraunt. I have concerns about falling on a slippery floor. Lifting to much, what if I tear something inside and start bleeding? And the risk of infection from other people. Working with the public, especially where contact with food, silverware they have used and such is the majority of what I do! I've got to do something though. I've been on a leave of absence for almost a month now and unfortunatly money doesn't grow on trees! And I've always been a worker. Staying at home ALL DAY LONG is becoming more than I can bear, but I don't have the energy to do much. UGH. Will the new meds make my immune system even worse? I dunno. Thanks for listening.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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Re:new here... 11 years 10 months ago #1840

  • 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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Gretchen:

I'm not sure what to tell you about work. Everyone has to make their own decisions based on their situation. I never really thought about the "what if's" because they are too massive. What if you fall down the stairs at home? What if you get in a car accident going to the grocery store? What if you break a glass washing dishes? A lot of thngs can happen just being at home. Even eating lettuce or tomatoes bought at the grocery store has the risk of E coli. I can't think like that. I'd go crazy.

The thing about Prednisone is that it does make you feel weak when you taper, but staying inactive can make things worse. You lose muscle mass and it's hard to build that back up. Maybe you can take shorter shifts?

Here is a good article about Prednisone and how it affects the immune system. It's not quite as bad as most people think.

www.gihealth.com/html/education/drugs/prednisone.html

As for Rituxan, most people find that they do not get sick more often. I didn't. The only real dangers are Hepatitis B reactivation and PML. Those can both be serious. Luckily, both are rare.

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Re:new here... 11 years 10 months ago #1896

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Sandi, I appreciate you! I don't even know you but your wisdom and insight are inspiring.
I'm not much of a worrier, really. It doesn't do anything to help the situation in fact it only makes it worse! The thoughts do cross my mind but they don't become who I am. I don't let they rule my attitude and actions. Life's to short!
I will go back to work. Not so many hours as before at first though. I'm looking forward to it even. Just gotta readjust my approach and pay more attention.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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Re:new here... 11 years 10 months ago #1903

  • 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
  • Posts: 12436
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Attitude is everything. I know it's hard. Check with your doctor to see what he thinks and go from there.

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