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Newly diagnosed isolated & frustrated

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1 year 3 months ago #72918 by PYager1313
Newly diagnosed isolated & frustrated was created by PYager1313
Hi everyone, my names Paige and I'm I've been newly diagnosed with ITP here in Canada December 2022.  I am currently in hospital as my counts have dropped down to 2 last week and Doctors felt it necessary to be admitted to hospital.  Myself and my family are beginning to be very frustrated with treatment as nothing seems to be working. I've had 3 IVIG transfusions since Dec.12 22, been on dexamethasone and prednisone and now on cellcept and dex to hopefully raise counts enough for me to go home. Before this I was an otherwise healthy 31 yr old mother of one.  My Doctors do believe that my diagnosis is isolated to having been vaccinated in late Oct. I am just wondering if there is anything or anyone that has maybe had a similar medication trial and error process or just where we can go from here. I've been in the hospital now a full week and just want to go home. 

Thank you 

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1 year 3 months ago #72920 by CindyL
Replied by CindyL on topic Newly diagnosed isolated & frustrated
For some reason the site isn't letting me see where in Canada you are.  I'm in NB.
It sounds like your doctor is throwing everything at you to see what sticks.  I did a full year on Prednisone when I was diagnosed in 2004.   I haven't been as low as 2, but was down to 7 and not hospitalized.  Do you have severe symptoms or is this just as a pre caution?  I think the doctor needs to slow down a bit and see if any of the treatments are working.  Sometimes it takes time for one to work.
Good luck and keep us posted.

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1 year 3 months ago #72922 by PYager1313
Replied by PYager1313 on topic Newly diagnosed isolated & frustrated
Hi Cindy, 

I'm located in Saskatchewan.  Yes they have really thrown it all at me lately.  I've had counts as high as 125 and then within a day they drop back down to below ten.  I do feel in very good care here. The hematology team at the hospital I am in is one of the top in the Canada. It just seems like so much trial and error and just no progress. 

Thank you for replying. I am beyond grateful for this group and discussion board and all the information available. Makes me feel less like on an island. 

Paige Y. 

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1 year 3 months ago #72923 by CindyL
Replied by CindyL on topic Newly diagnosed isolated & frustrated
We're a pretty good bunch here, Paige!  There are a few more Canadians here, mostly Ontario and Alberta. 
I was really happy to find this site too!
It does help that you are comfortable with your hospital.  If you trust your doctor(s), relax and breathe.  You can always come here and vent or ask questions.  We all have opinions, but it's your doctor(s) you should listen to.

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1 year 2 months ago - 1 year 2 months ago #72944 by gozorakgogo
Replied by gozorakgogo on topic Newly diagnosed isolated & frustrated
Hello Paige. I was in the same boat in July 2020. Perfectly healthy, 54 years old having never been a patient in a hospital except for my birth and having my tonsils removed back in the 70's  Out of the blue I started bruising everywhere. The bruising increased by the day and I felt weaker and more fatigued each day. Finally after someone at work told me I look really bad and that I had better get things checked out I did. When the CBC result came in I was told to go to the emergency room immediately because my platelet levels were at 2. This was July 2020. I didnt know what that meant but I feared the worst. I was in hospital for 6 days. Multiple IVIG's, a platelet transfusion, and high dose prednisone got my levels up to around 40. I was released but within a week the level was back down to 3. This time I was experience gum bleeding and had developed horrible looking black blood blisters in my mouth. I was put in ICU for 4 days. It was then decided to embark upon a treatment of 4 Rituximab weekly  infusions as well as a weekly Nplate injection. 

I did the 4 Ritux infusions and continued with the weekly Nplate infusions until November 2020(4 months) It took until around that November for my platelets to reach and maintain a level over 100. By Feb 2021 my levels were over 200 and have remained there ever since. Thats 2 years. 

Every case is different. Different physicians will embark upon different treatments and therapies based on their experience and the individual being treated. I suppose I was fortunate in that the treatment chosen for me eventually worked exceptionally well. There is hope. The first 6 months after diagnosis, especially the first couple of months, were horrible. Nothing worse than seeing your platelet level rise enough to be released from hospital and thinking(without yet fully understanding ITP) well I guess thats over only to have your platelet level crater and have to go back in. It was very discouraging and depressing. In the end, knowing what I know now it was no where near as serious as I feared at the time(platelet levels near zero are serious of course but I was in that range for only a couple of weeks) and was more of an inconvenience.

Its going to be difficult for you having to deal with the roller coaster CBC results. After my second Ritux infusion my level reached around 110. I was ecstatic. I thought well Im over this ITP stuff. A week later the CBC before my third Ritux infusion had my level back down at 30. I was devastated. Luckily my level continued increasing after that setback but I kept waiting and expecting the platelet levels to crater for the next six months or so but thankfully they never did. Honestly, at the one year mark I no longer thought much about it. Now, almost two and a half years later its like it never even happened. I visit this forum usually, when I remember, every 6 months or so just to see whats up.  

To sum it up. Being confused, worried, and even a bit distressed and even depressed at this stage is perfectly normal. In time however you will find yourself less confused, worried and distressed by the day until you reach the point I am at now. It will be like it never even happened. Take care

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1 year 2 months ago #72945 by PYager1313
Replied by PYager1313 on topic Newly diagnosed isolated & frustrated
Update:

We got news today that the splenectomy may be off the table for now, as they want to wait one more week on the Cellcept treatment. Also the only surgeon available in my province is a 6 week wait window.  My Hematologist team has also brought up Rituximab treatment if after this week the Cellcept still shows no response.  We are just hoping that my body shows some response this week, counts go up that I can be transferred closer to home and wait a surgery date or go home and manage outpatient until then.  

Thank you for all the support and information.  

Paige Y.
Saskatchewan, Canada 

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1 year 2 months ago #72946 by PYager1313
Replied by PYager1313 on topic Newly diagnosed isolated & frustrated
Thank you

I really appreciate the reply and kindness.  It has been a very big, long Rollercoaster of emotion.  I'm still trusting i am in the right place to get better, getting the right treatments and just taking things day by day. 

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  • dmurashi09
  • Offline
  • Diagnosed with ITP in 2011 at age 45. Remission 11 years until 2022.
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1 year 2 months ago - 1 year 2 months ago #72947 by dmurashi09
Replied by dmurashi09 on topic Newly diagnosed isolated & frustrated
Hi Paige,

Sorry you are going through this.  Typically your medical team will test for viral infections such as Hep-C and HIV to eliminate those as primary causes for low platelets.  In addition, it might be a good idea to get tested for H. Pylori bacteria which is associated with low platelets as well.  ITP is diagnosed based on elimination of these as well as other potential causes. In my case, I was tested for all of the above in addition to having a bone marrow biopsy to rule out bone marrow disorders.  These all came back negative/normal for me.
Regarding splenectomy, it seems odd they would recommend this so soon for a newly diagnosed patient. It's only been about 6 weeks since your diagnosis.  If a short course of steroids (prednisone or dexamethasone) don't get your counts stable above 30-50k, the usual 2nd line therapies are one of the TPO-RA meds, Promacta(eltrombopag), NPlate(romiplostim), Doptelet(avatrombopag), which stimulate production of platelets. Another 2nd line therapy is Tavalisse(Fostamatinib) which aims to block the destruction of platelets. I'm currently taking 25mg of Promacta which after only 9 days raised my count from 15k to 138k, which is remarkable.  However, I've learned to temper my expectations with this disorder.  More time and labs will tell if my counts can stabilize.  50K or higher is acceptable to me, I just need to determine with my doc if/when a reduction in med dose/frequency is warranted. Still too early to tell.  Splenectomy is irreversible and makes you more susceptible to infections.  I would recommend asking your docs about TPO-RAs.  Best of luck and know you're not alone in this.  

Derek

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1 year 2 months ago #72949 by MelA
Replied by MelA on topic Newly diagnosed isolated & frustrated
Paige of course you are on a roller coaster of emotion - you were diagnosed in December 2022 and it is now towards the end of January 2023 and you have been slammed with 4-5 treatments in a very short time!   Were any treatments given time to see if they would work?    When I was diagnosed in 1989 with a count of 11k and dropping I had only 2 choices, splenectomy or prednisone and I chose prednisone & still have my spleen.    Remember that Rituximab takes a while to work if it is going to work.   Be sure you read up on all treatments and splenectomy (that is not a guarantee or a cure).

The best advice is to read read read and know what your options are and to remember it is your body.
Good luck!

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

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4 months 4 weeks ago #73387 by Daryl
Replied by Daryl on topic Newly diagnosed isolated & frustrated
My ITP came about from vaccination also. Which I never even knew was a thing. I'm similarly on a rollercoaster though my counts have not been too bad. The idea that something from the medical industry caused my disease is difficult to process and difficult to talk about.

One thing you can be grateful for is Canadian healthcare. Hopefully your treatment costs are manageable. I'm in the US and I'm completely stumped on how I'll afford treatment. The insurance companies here are absolutely ruthless when it comes to rare diseases and "specialty drugs."

Anyway best of luck and hope the ride ends sooner rather than later.

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