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TOPIC: Excellent Advice for newly diagnosed

Excellent Advice for newly diagnosed 4 years 9 months ago #44008

  • Melinda
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You keep us posted ok? Darling photo!

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Excellent Advice for newly diagnosed 4 years 9 months ago #44030

  • jbazemore05
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Thank you Melinda. I have received my second opinion and because my count has stayed between 3 & 5 I am going to have my spleen removed. The doctor here at Nash General have taken the time to sit and explain every thing to me. So that has put me at ease very much. So I will been having this today and I will keep you guys posted about my progress.



Thanks for the support
Diagnosed in Sept. 2014 with a 2 count and again in Oct. 2015 with a 2 count.

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Excellent Advice for newly diagnosed 4 years 9 months ago #44032

  • Melinda
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The very best to you - and an easy recovery and great platelet counts!

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Excellent Advice for newly diagnosed 4 years 9 months ago #44035

  • jerig47
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The very best of luck to you with your splenectomy! I know everyone is different, but had mine in the 70s and still high platelets. Let us know how you're doing.
Jeri

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Excellent Advice for newly diagnosed 4 years 9 months ago #44071

  • jbazemore05
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Hello everyone Thanks for the well wishes. Well I had the splenectomy Thursday and today is Saturday the pain has eased a lot I told that it can be a four to six week recovery. I am good with that and berry HAPPY that my count as of today is up to 13,000 it hasn't been that high in weeks.I know it is not much and everything does not happen over night I just glad it's going up and not down. I will keep everyone update on my counts until then stay Blessed
Diagnosed in Sept. 2014 with a 2 count and again in Oct. 2015 with a 2 count.

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Excellent Advice for newly diagnosed 4 years 9 months ago #44073

  • Melinda
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Well it is so good to hear from you so quickly bless your heart! Glad all went well and you are on the road to recovery - behave yourself and do what the doctors say :)
Any increase in count is good news, may your count keep increasing!!

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Excellent Advice for newly diagnosed 4 years 9 months ago #44074

  • jerig47
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Glad to hear surgery went well. Hoping this means high platelets for you! Thanks for the update and take care of yourself.

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Excellent Advice for newly diagnosed 4 years 9 months ago #44120

  • StoutRoots
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So I had the ivig and it boosted my numbers to 223. but just as you said after a week my number is back down to 36. They put me back on the prednisone at 40 mg a day and they want to wait till Friday to check again and see where I'm at. If I am still above 30 they are going to give it more time to see if I am stabilizing. If I am below 30 they want to have me try Rituxan. Does this seem like the best course of action? It kinda feels like I am just delaying having my spleen removed.

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Excellent Advice for newly diagnosed 4 years 9 months ago #44124

  • 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 wouldn't think of it as delaying having your spleen removed. It's more like preventing having your spleen removed. I was able to keep my spleen and am still glad that I did. I treated with Prednisone and Rituxan on and off for 8 years, and have been in remission for the past 9 years.
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Excellent Advice for newly diagnosed 4 years 7 months ago #45317

  • nitbit21
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Hi,

Can I talk to you to get some advice?

Thanks,
Nidhi

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Excellent Advice for newly diagnosed 4 years 7 months ago #45319

  • 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 can talk to anyone you want! Would you like to start a thread?

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Excellent Advice for newly diagnosed 4 years 7 months ago #45320

  • nitbit21
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Thanks for quick reply. I have this question for my sister in law who is in India and has chronic ITP for past 2 years. She has been on lot of different medications. She was doing well for past 8 months but all of a sudden on 1st Dec her count went around 4000 and also had some internal bleeding. She is in hospital and in on ventilator. Her hemo has gone down too. Has anyone come across such situation and can suggest something?

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Excellent Advice for newly diagnosed 4 years 7 months ago #45322

  • 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 don't know enough about her situation to make any suggestions. Why is she on a ventilator? What treatments has she tried?

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Excellent Advice for newly diagnosed 4 years 7 months ago #45323

  • nitbit21
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She is having internal bleeding so doctors are keeping her on ventilator to avoid any damage due to movement or anything else. Below is what she has taken. IVIG increased her platelets to 10000 but it is lower again so they are giving her another round of IVIG. She is also taking rivoled for past 10 days or not but that is not helping either.

ivig/ in 2 days 150gm
platlets 12units
SDP 4unit
prpc 1unit

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Excellent Advice for newly diagnosed 4 years 7 months ago #45325

  • 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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Of those four listed, IVIG is the one ITP treatment that is actually known to raise platelets and it is a temporary one. Transfusions will help in a bleeding situation, but it is very temporary....like hours. I've never heard of these for ITP: SDP 4unit and prpc 1unit.

Common ITP treatments include:

Prednisone
Decadron
Rituxan
Promacta
N-Plate
Win-Rho

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10 good ITP life pointers 4 years 7 months ago #45331

  • jhills4198
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Thanks for this post. My daughter has recently been diagnosed with itp. She is 12 years old and is just devastated about not being able to participate in her favorite sports and gym class. We took her to doctor for some bruises and was then forwarded to hospital. At that time her level was 14 and now not even two weeks later it is at 7. Her doctor says they don't want to complete any treatments unless she is actually bleeding. I'm a little concerned as her level is so low. Do you think no treatment is the right thing?

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10 good ITP life pointers 4 years 7 months ago #45335

  • 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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More and more, doctors are leaning towards not treating children due to long term side effects of the medications.

Here are some articles for you:

pdsa.org/forum-sp-534/12-newly-diagnosed/27819-managing-itp-in-children-update-12-4-14.html

Here is a current discussion that might be helpful:

pdsa.org/forum-sp-534/6-general-itp-discussion/28428-labwork-and-questions.html

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Excellent Advice for newly diagnosed 4 years 5 months ago #45952

  • Hernas
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Thanks for the info and putting my mind at ease. Newly diagnosed in early Dec. 2014. I was hospitalized for four days and released/prescribed prednisone-60 mg per day. Platelet levels increased and decreased prednisone. Level last week was 242,000; dr reduced to 12 mg. Platelet level decreased to 3,000 on Tuesday. :( bruising on thighs and petechia on lower legs. I went to ER for platelet transfusion,level did not increase; however increased prednisone to 60 mg per day. Level is now 9,000. Doctor doesn't have answers why level reduced drastically from 242 to 3. Anyway, thanks for your encouraging article. :)

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Excellent Advice for newly diagnosed 4 years 5 months ago #45955

  • 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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Platelet counts often drop when Prednisone doses are reduced. That is the nature of ITP, unfortunately.
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Excellent Advice for newly diagnosed 4 years 5 months ago #45993

  • Hernas
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I've been reading about side effects of prednisone. Is there a time frame when one should stop using and try other treatments?I've been on prednisone since December 13th at 60 mg per day-platelet level over 400; reduced to 40 mg a day a week later- platelet level over 300; reduced to 15 mg a day the following week-platelet level 242; reduced to 12 mg-platelet level 3; now, back at 60 mg a day-platelet level now 9. It has been an exhausting, stressful and worrisome time for me and family. Plus, I recently had a knee injury 3 days before prednisone was reduced to 12 mg. Dr. said injury had no bearing on reduction of platelets. How true that is, I don't know. Thanks.

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Excellent Advice for newly diagnosed 4 years 5 months ago #45994

  • milly
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The side effects are awful and the longer you are on it the worse they are, I had prednisone for 12 months, started on 75mg and reduced very slowly over 12 months, worst year of my life.... Did it work, yes it did. Would I do it again..... Don't think so. From what I have seen on here over the last few years it's rare to get remission from pred, so I guess I was lucky.
I think I stuck with it because there was always a pattern, reduction in dose.... Platelets dropped but after a week they would go back up again, this happened every time the dose was dropped.
It's a cruel drug but it's also one that worked for me.
There is no practice run in life.
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Excellent Advice for newly diagnosed 4 years 5 months ago #45995

  • Sandi
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There is not a set time to stop using Prednisone; it is up to the patient and the doctor. It seems that your doctor tapered you in very large doses which can cause major drops in counts. You had a great response and a slower taper may have held your counts longer. A fast taper usually ends up with the patient having to start all over again. Back to square one.

The side effects are horrible, we've all been there. Most of us are on it for a few months and counts can drop after that, maintain at a safe level or stay up. Everyone is different.

I did two rounds of Prednisone when I was first diagnosed and then had three treatment free years. I did relapse after that and went on and off of Prednisone a few more times before I stopped that Merry-Go-Round, then used Rituxan.

ITP does not usually have a quick fix and it can take time to acieve remission or attain stable counts. In the meantime, you just have to try to hang in there, be patient and go withe the flow. That is hard to do on Prednisone, I know!
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Excellent Advice for newly diagnosed 4 years 5 months ago #46450

  • Daveeda
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Great advice I really needed that.

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Excellent Advice for newly diagnosed 4 years 4 months ago #46989

  • bethieofva
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Thank you for this information. I am brand new to ITP and grateful to have found this site. I am also nervous and confused. I have just begun my journey and glad to have found friends along the way.
49 yo recently diagnosed with ITP.

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Excellent Advice for newly diagnosed 4 years 3 months ago #47902

  • Elisa
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Hello, Thank you so much for this! It was honest and funny at the same time....gave me some ease but also gave me a lot to think about.


I first found out I had issues with my platelets 1/2014...but since I was around 100 count on my last test that year, I didn't think much of it. This past Jan, I was tested again during my routine check up. My count was in the 50's...freaked me out a bit because I kept reading about what it could mean (worse case in my mind, was cancer since my mom had cancer). Was referred to an Oncologist again and had another test right before I visited him; it was in the 30's. That is when I found out I had ITP...all other test that were done came back normal which I was relieved for...but didn't really think much of ITP. My doctor didn't seem so worried so, I wasn't so worried. But yesterday, my count was at 18; the on-call doctor had a nurse call me within an hour of having my blood drawn; I really freaked out! I've never had a nurse/doctor call me so quickly after a test! The oncologist called me this morning and asked me to get tested one more time on Monday to see if it continues to drop. I don't have any bleeding or headaches...bruising I do have...but it's due to things I can account for; I was hit by a branch as I was running through a trail 3 weeks ago and fell off my bike last week. However, Wednesday, I woke up with a bruise on my right foot (this is what prompted me to get on track with my tests...I had been avoiding them). We will talk again Monday to determine the next step. I'm worried but keeping myself calm as much as I can...no sense in worrying about something you can't control at the moment....I keep telling myself that.

Again, thank you! I am happy I found this forum and website :)
— Elisa
35yrs old recently diagnosed with ITP in 1/2015

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Excellent Advice for newly diagnosed 4 years 3 months ago #47919

  • 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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Great attitude! It seems like you are not having many symptoms and that is what matters most. If you do need to treat, you will manage it and do just fine! Stick with us, we can help with any questions or fears that you have!
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Excellent Advice for newly diagnosed 4 years 3 months ago #48021

  • Elisa
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Thank you!

So I ended up starting treatment on Monday as my count came back at 17. Prednisone 20mg daily...from what I've read, that's a pretty low dosage. I'm hoping that means low intensity of side effects (wishful thinking??). Anyways, I have to get a CBC every Monday, Tuesday, and Friday. Today, 3 days in, platelets went up to 24...I thought this was odd because Oncologist said it would take 1-3 weeks to see any improvements. The oncologist also added a red blood cell morpholog which says my platelets are "Large." I read somewhere that's normal as it means older platelets (which are smaller) are the ones that were attacked and the newer ones (which are larger) are what's left. Also, I found out my aunt on my mothers side also has ITP. My family has never been good at sharing medical information mostly because they don't know how to explain it nor the exact medial term in English which makes it harder to understand. It's scary because she's had some very strange medical stuff come up. Last year she had a mass removed from her abdomen but it was benign which was good news but can't help to think it may be related.
— Elisa
35yrs old recently diagnosed with ITP in 1/2015

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Excellent Advice for newly diagnosed 4 years 3 months ago #48023

  • Sandi
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Elisa:

I doubt the mass is related to ITP. ITP has nothing to do with tumors or masses, benign or malignant.

20 mg's is a fairly low starting dose and side effects shouldn't be as bad. Some people can respond in days, so I'm not sure why your doctor told you it would take weeks. Three times a week is sort of overkill for counts; hopefully he will cut that back soon.

Yes, large platelets are common with ITP.

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Excellent Advice for newly diagnosed 4 years 2 months ago #48595

  • merlotyouandme
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Thank you for the very insightful message. I probably learned more here than from the Doctor! Great thoughts and advice

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Excellent Advice for newly diagnosed 4 years 1 month ago #48976

  • seglenny
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I'm soo glad to have found this place! Just diagnosed and very scared and confused!

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