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Excellent Advice for newly diagnosed

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3 years 6 months ago #69920 by JMRN7643
Replied by JMRN7643 on topic Excellent Advice for newly diagnosed
Thanks for posting. This is both helpful and comforting. I was diagnosed 2 weeks ago, with a count of less than 7.
Hind sight is always 20/20, right? Well, I've been feeling lousy for months....and being a registered nurse, I've been working a lot. Thanks to COVID, there has been no shortage of overtime hours available. I had been having horrible headaches and petechiae on my face and around my mouth, which I just considered a result of wearing a tight fitting mask for the majority of my day and I excused my exhaustion on all the extra hours......until I took a week of vacation and did not feel any better. It was then that I started bruising excessively and so I the nurse in me thought I should probably get that checked out....Now here I am, newly diagnosed and starting my treatment journey. I appreciate the words of wisdom and this group! Thank you!!

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3 years 6 months ago #69985 by sleev-les
Replied by sleev-les on topic Excellent Advice for newly diagnosed
You're a couple weeks behind me. The 17th is a month since I was admitted to the ER to figure out what was wrong. So I'm a month in . Still on the primary treatment of Prednisone and weekly blood work. Petachea started for me after the prednisone started though which is odd, but hey, everything about this is odd and no one is the same in this journey. My symptoms were excessive bleeding (diabetic so insulin injections) and bruising around my stomach. Crazy that it just happens, but I am happy I found this site and some of the Facebook groups. Has been great to talk and hear others experiences.

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3 years 3 months ago #70453 by Zach Tarver
Replied by Zach Tarver on topic Excellent Advice for newly diagnosed
Hello my name is zach tarver, I am 25 years old and was diagnosed with ITP a month ago and in the hospital ever since because my local hospital transferred me to a different hospital out of state because our local one doesn't have a blood bank. I was admitted with platelets at 5, had purpura and petechea, bleeding gums. Dexa and IVIG were givin to me, my platelets shot up to 125k and crashed to 6 within a week. The same procedure was done and the same response was had. They started Retuxan and Nplate injections about 3 weeks ago with no response so far, I also started cyclosporine a week ago. My numbers are fluctuating between 0-3 for the last week. Petechiae and purpura are basically non existent, and no bleeding for a week. Anybody else out there?

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3 years 3 months ago #70467 by EdwardJacob
Replied by EdwardJacob on topic Excellent Advice for newly diagnosed
I know this is scary. My platelets are killed by my immune system. It is called autoimmune thrombocytopenia. Prednisone increases the numbers when they are low. Is yours autoimmune? Do they know the cause yet. I wish you well. You are not alone with this. There are many of us.

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3 years 3 months ago - 3 years 3 months ago #70468 by MelA
Replied by MelA on topic Excellent Advice for newly diagnosed
Hi Zach - you are from a beautiful State. You are probably in Colorado now?
Do you mean platelet of 5 or 5k, 6 or 6k?

Are you on Rituxan, Nplate and cyclosporine right now? Rituxan and take a long time to work if it is going to. IVIg is not long lasting. And since I've only had prednisone & WinRho I know nothing about the other.

Know this has your mind in a twist and I hope that your platelets will increase soon and stay at a good level. There is life with ITP - I've had it since 1989, and moved overseas with it.

Keep us posted!

PS - you probably would get more responses if you start a new thread in the Newly Diagnoses section as more people will see it.

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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3 years 3 months ago - 3 years 3 months ago #70469 by Zach Tarver
Replied by Zach Tarver on topic Excellent Advice for newly diagnosed
By 5 I meant 5K, Today i was at a 0 with just slight gum bleeding and was provided a platelet transfusion that bumped me up to 2k. Trying to stay positive! and I am from Wyoming, currently admitted in Montana. I currently have gone through 4 treatments of rituxan since December 16th, I started cyclosporine a week ago, and have been getting Nplate injections once a week. Currently being tapered off prednisone as they dont seem to be doing anything. Thank you all
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3 years 3 months ago #70514 by Columbia09
Replied by Columbia09 on topic Excellent Advice for newly diagnosed
It could be a long fight against ITP. Thanks PDSA for us to hang around sharing information and get inspired from each other. Personally, I became very
sensitive on my diet. Many food go against platelet, such as spicy, onion, tomato, milk, bee products. The one I found is helpful with platelet generation is guava fruit. The other thing to pay attention is if you have other immune issues, such as thyroid, psoriasis, which might have some inter-connected effects.

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3 years 3 months ago #70516 by gozorakgogo
Replied by gozorakgogo on topic Excellent Advice for newly diagnosed
what parts of Wyoming are you from? I was stationed at F.E. Warren AFB in Cheyenne a long long time ago in a decade far far away(1987-1991) I loved it there

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3 years 3 months ago #70519 by Zach Tarver
Replied by Zach Tarver on topic Excellent Advice for newly diagnosed
I have altered my diet too, cutting anything with sugars or dairy for now, platelets went up to 4 today which is better than a 0. I am from northern Wyoming, the Big Horn Basin. My dad lives just south of Cheyenne, I love Wyoming as well.

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2 years 9 months ago #71624 by justme
Replied by justme on topic Excellent Advice for newly diagnosed
Thank you. This is so helpful.

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2 years 9 months ago #71647 by Zach Tarver
Replied by Zach Tarver on topic Excellent Advice for newly diagnosed
Been a long time since I’ve updated, I got out of the hospital after 2 months with platelets at 0 basically. 2 weeks out of the hospital and my numbers went up to 300,000. I’ve been in that range for the last 6 month now! Get weekly Nplate dose of 1 and I’m almost off cyclosporine

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1 year 9 months ago #72455 by malizgue
Replied by malizgue on topic Excellent Advice for newly diagnosed
Hello, 
im having issues with my mother newly diagnosed not fond of meds, is there something natural or supplements that help out. My mothers doc hasnt give her anything at all, just said if she bleeds profusely to take her to emergency asap and tell them what she has..that's all.
we are currently looking for a doc that takes her insurance at this moment, that would be our dr number 6..yes the others just dont do anything at all which is worrying for us.
sorry if it is quite off topic, we are kind of lost

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1 year 9 months ago #72469 by MelA
Replied by MelA on topic Excellent Advice for newly diagnosed
malizgue what is your Mother's platelet count?

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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1 year 9 months ago #72474 by malizgue
Replied by malizgue on topic Excellent Advice for newly diagnosed
98. Her dr just said if she bleeds too much to to emergency room, to wait until body collapse then they can see what's wrong with her.
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  • 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.
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1 year 9 months ago #72477 by mrsb04
Replied by mrsb04 on topic Excellent Advice for newly diagnosed
Malizque
A count of 98 does not require treatment.  A watch and wait approach is the correct way to go. This is in line with the international ITP guidelines. Follow the link below 
  www.pdsa.org/images/InternationalConsensusReport2019.pdf

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1 year 9 months ago #72478 by MelA
Replied by MelA on topic Excellent Advice for newly diagnosed
malizgue a count of 98 is a good count really!  Treating at that count would never be done by my hematologist!
However if I had a hematologist (I'm assuming your Mother's doctor is a hematologist) tell me to just go to the emergency room if I'm bleeding too much & to wait for body collapse I'd find another hematologist fast!  That's ridiculous!

Are you near Houston, aren't there really good hospitals there?  (I'm talking about a 2nd opinion not to take her to the ER if she's bleeding a lot)  

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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1 year 9 months ago #72482 by malizgue
Replied by malizgue on topic Excellent Advice for newly diagnosed
Her blood count went to 65 no apparent reason. She was told a year ago she was a point from hitting leukemia, tbats how grandpa die and didnt find it until he died.
She lives in Houston. She will have a dr appt with a Dr next week (Dr #8) for whatever reason she's referred always to oncogist instead of hematology. The many Dr she had so far, only do the same blood test but dont do anything or say anything at all, no recommendations, diet, supplements, advice  at all. She's tired all time, she's sleeps a.lot, don't feel hungry buy force herself to eat. There are many times I believe she won't make it. She's losing faith. Is like when you turn off a fan that's stopping and shut down slowly.
That's why I make take her to a Dr  I heard a lot, hes close and across to the border a friend days he's an specialist in kidney  and liver and he cured a friend who's been suffering with anemia almost leukemia. My friend says he prescribed traditional meds along with natural  medicine and supplements.

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1 year 9 months ago #72485 by MelA
Replied by MelA on topic Excellent Advice for newly diagnosed
A hematologist is an oncologist too.  I just saw mine yesterday, the exam room was a hop skip & a jump from the infusion room - he specializes in blood cancers, GI cancer, and blood disorders [ex: ITP].    

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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1 year 9 months ago #72487 by JJ
Replied by JJ on topic Excellent Advice for newly diagnosed
There's nothing to do unless the platelet count goes much lower. Changing doctors won't help as none of them will treat. There are no supplements or diet that will help. You and she are worrying unnecessarily. 
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1 year 9 months ago #72495 by EdwardJacob
Replied by EdwardJacob on topic Excellent Advice for newly diagnosed
They thought I had ITP for several years. My platelets kept on a slow slide down. No treatment was needed, I was told, until they got lower. A number of treatments were finally tried. I too was tired all the time. Finally, I had a bone marrow biopsy. It sounds terrible, but is no big deal. The use lidocaine. It doesn't hurt. There is a dull ache which goes away in a few days. It showed blasts in my bone marry. I have Leukemia. I am 76. I am now going through chemotherapy. While there are risks at this age, I am fortunate that I have Medicare and a good supplemental plan. While the treatment and the disease are dangerous stuff, I wish I got the bone marrow biopsy 10 tears ago. I hope I survive the treatment and have a few more years. 
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3 weeks 1 day ago #73511 by Brookiesnana
Replied by Brookiesnana on topic Excellent Advice for newly diagnosed
Thank you for the excellent info. I was diagnosed with ITP 2 years ago and underwent several treatments, which really were ineffective. My hematologist started me on NPlate, but also started me on Rituxin with the hope of getting me off the NPlate. The Rituxin didn't work for me as well as the DR was hoping. I am currently receiving an NPlate injection every week and my count is holding between 130-170. My numbers fluctuate every week. My husband and I wear a mask wherever we go, and while wearing a mask in a grocery store is one thing, we also wear a mask around our family, specifically our daughter and 5 year old granddaughter, who is in preschool and you never know when she will get sick, which breaks our hearts. We have not kissed them in 2 years, we don't eat with them, or do anything family oriented for fear of us catching something and my count dropping. We can't seem to figure out how to live as normal a life as possible. Does anyone have any advice?
Thank you all so much

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3 weeks 1 day ago #73513 by Columbia09
Replied by Columbia09 on topic Excellent Advice for newly diagnosed
Not sure if it applies to others but food might be a source triggering the ITP. In my case, it's the propolis causing me trouble. It looks after my search that other bee related food such as honey more or less results in the drop of platelet count.

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3 weeks 1 day ago #73516 by CindyL
Replied by CindyL on topic Excellent Advice for newly diagnosed
Brookiesnana, speaking strictly for myself, even when my counts were low I didn't avoid my family.  With your numbers as good as they are, I would just live my life normally.  Back when I was first diagnosed, I had a young niece who liked to crawl over me.  My sister would get upset but I told her that if I got a bruise from my niece at least I'd know where it came from.  One Easter a few years ago, we went to my SIL's for dinner.  I didn't know that my other SIL was sick, but I didn't pick anything up. Each one of us is different and may not have the same reactions as someone else.  I had my spleen out in 2006 and still live normally.
Columbia, like I told Brookiesnana, we are all different.  I eat anything I want, including honey, and it doesn't affect my counts.

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3 weeks 17 hours ago #73518 by Brookiesnana
Replied by Brookiesnana on topic Excellent Advice for newly diagnosed
CindyL, thank you so much for your reply. It makes me feel better hearing that there is a possibility of living a normal life. I am slowly going to start taking my mask off around my family. unfortunately I have been masked since the pandemic began, and I am afraid that I will catch everything going around. T hank you again, you are my first response

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3 weeks 1 hour ago #73520 by CindyL
Replied by CindyL on topic Excellent Advice for newly diagnosed
Oh, trust me, I get it!  My husband and I still wear our masks if we go into stores.  My brother (who was a fanatic about staying away from people during the pandemic) and sister have both stopped wearing their masks in stores.  We see more people without them than without.  Hubby and I both have health issues which is why we still wear them.  I don't know if we'll ever stop.  The pandemic may be over, but Covid is here for a while.
I'm glad I gave you some peace of mind.

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3 weeks 40 minutes ago #73522 by Brookiesnana
Replied by Brookiesnana on topic Excellent Advice for newly diagnosed
My husband and I feel the same way about masks in stores and about Covid. We are just trying to get the courage up to try to start living life. I am glad you have reached out
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  • 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.
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2 weeks 6 days ago #73523 by mrsb04
Replied by mrsb04 on topic Excellent Advice for newly diagnosed
Brookiesnana
I have never worn a mask around my grandchildren even with counts as low as 4. I routinely wear them when I go for blood tests and medical appointments but other than that I assess the situation as to whether I wear one or not.
Are you still having weekly blood tests? It seems a bit excessive with a count that good.

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2 weeks 6 days ago #73524 by Brookiesnana
Replied by Brookiesnana on topic Excellent Advice for newly diagnosed
mrsb04,
 Thank you for your response. Yes, I do go every week to have my number checked and I get my NPlate injection then as well. The dose for the NPlate is still on the higher side, and it seems to be working. When I first came down with ITP I was in the hospital for 2 weeks with a count of 5000, and was told I was very hard to regulate since nothing seemed to work and was told by my hematologist to wear a mask around my granddaughter since she was in preschool. At this point I guess I am still spooked about taking it off around her, though my husband and I really want to. We do however wear our masks everywhere we go. My new hematologist, when we asked her if my body was actually making more platelets then it was destroying, said it is probably just the injection, which confused us.

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  • 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.
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2 weeks 6 days ago #73526 by mrsb04
Replied by mrsb04 on topic Excellent Advice for newly diagnosed
Basically N Plate (Romiplostim) tells your bone marrow to manufacture extra platelets because either it wasn't producing enough before injections started or your spleen is destroying your platelets. Yor haematologist should be able to tell you which it is. Have you had a bone marrow biopsy?
Over here in the UK injections are done by the patient at home which reduces the amounts of tests if counts are stable.

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2 weeks 6 days ago #73527 by Brookiesnana
Replied by Brookiesnana on topic Excellent Advice for newly diagnosed
I have not had a bone marrow biopsy, but my hematologist seems to think it is coming from my bone marrow. We are not allowed to give the injections at home, we have asked about that.

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