TOPIC:

A little background on me. I’m 38 now but in June 2009 at the age of 26 I was diagnosed with chronic ITP. My levels were hovering between 10-15K. Hematologist started me on a prescription of Prednisone for 2 or 3 months. Nothing changed. So my doctor had me try 4 treatments of Rutuxin. Also no real change to my platelet count from any of those 4 treatments. So by that October 2009 my Dr recommended a spleenectomy. Had the surgery and by all accounts it’s been a success and haven’t had any bruising or bleeding since and never had a low count at any of my check ups. I take no antibiotics, just a flu shot every fall as was recommended I do. Now since COVID began I’ve been a little extra concerned not having my spleen and with the vaccine I’m on the fence still about wether or not I want to get it. But my question is, would 4 months from diagnosis to removal of my spleen be too quick? Should my dr of tried other treatments first? Kinda looking back now and wondering. It’s been some extra anxiety not having my spleen this last year thru the pandemic and even though the spleenectomy was a success for my platelet count it’s a little concerning still of my spleen was removed before maybe it should of been? What do you all think. New to the site just looking to hear from those who can relate.
Thank you!!

Medicine is forever evolving, in 2009 there were less medical options than there are now.
Splenectomy is now rarely recommended within the first year. When I was diagnosed in 2014 it was mentioned very early on but never again after I flatly refused to have a perfectly healthy organ removed.
As for Covid if insufficient people have the vaccination it will never be brought under control.
Spleen or no spleen there are 2 choices. Either have the jab and risk a platelet drop that can be rectified medically or don't have the jab and risk not only infecting others but also the possibility of ending up on a ventilator in ITU and dying.

I had my spleen removed in June 2020, seven months after my initial ITP diagnosis. Yes, it's rare that it's recommended in the first year, but the doctors had tried literally everything to raise my platelet levels, and nothing worked for more than a few days. My count was not stable above 0. Emergency IVIG infusions would elevate my count up to about 50k for a few days initially, but after a few months, my ITP became resistant to even IVIG. I had two uncontrolled bleeding events during that time, and the risk of me having a brain bleed was high since the treatments they tried were causing my blood pressure to skyrocket (even while taking blood pressure medications). I went into surgery with a platelet count of 7k (and dropping) after a massive IVIG infusion. After the splenectomy, my platelet went up to 145k and then declined back to 9k over 8 weeks. At that point, I was put on Promacta (which failed to have an effect before the splenectomy), and that has slowly brought my counts up to around 200k and holding.

I understand your concern with the Covid vaccine. I'm struggling with this myself. I've registered for it but haven't been called in yet. My ITP was triggered in 2019 by a MMR vaccine booster. I know many people without ITP who have had the Covid vaccine, and many of them had nasty reactions, so I'm somewhat concerned that I'll end up back in single digits or at 0 after going through almost a year of hell to stabilize it. I've chatted with my primary care physician and my hematologist about this. They've both recommended that I take it, but they do understand my concerns and have told me that it's ultimately my decision. I'll probably get it, but I don't for a second think that anyone should be criticized for not getting it.

mhprice. How long were you taking promacta for prior to your splenectomy?

mhprice - what are the nasty reactions of the people you know who have been vaccinated? How long did their reactions last? So many people are afraid of the vaccine because they know someone who had a reaction - I know an RN who had a reaction 7 hours after the 2nd, it was chills a temp and body aches which lasted 24 hours, she said big deal & a small price to pay for some protection from covid and that she would do it all over again.

Of course no one should be criticized for not getting the vaccine - I don't think anyone was were they?
This is a decision one has to make for themselves and that is that!! I personally don't care for what the alternative could be if I didn't get the vaccine. I had my 2nd injection of Pfizer last Saturday and am doing fine. Have had ITP since 1989.

They tried two different dosages (50mg and 75mg daily) over the course of about 3 months. It didn't have any effect--my counts would always fall back rapidly to single digits (triggering another round of platelets and IVIG in the clinic).

I just posted about this one of the other threads, but I had my second Moderna shot on Friday (April 9). It is now two days later. I had a very nasty reaction to the vaccine (sustained fever between 101f and 102f) along with full body aches yesterday. This morning, I woke up with petechiae on my hands and arms, which usually don't appear until I'm below 20k. I was at 230k prior to the first Moderna shot. I am not looking forward to next week, since I really don't want to spend it in the hospital.

mhprice wrote I am not looking forward to next week, since I really don't want to spend it in the hospital.
Maybe so but better than being on intensive care receiving life support.

This is true--given my reaction to the vaccine, my reaction to the actual virus would've crashed my platelets and made me very ill. Nevertheless, I tend to have widespread uncontrolled bleeding when I get to low platelet counts, so this could easily be as critical. I was very lucky last year that I didn't have an ICH, since my count fell to 0 several times. Given that my initial ITP was triggered by an MMR vaccine booster, and it has upended my life, career, and family, I have no love for the vaccine industry.

Glad to hear that you were able to complete your vaccine series! I hope that your count drop is short-lived and corrects on its own as many of ours have done. Have you ever tried Tavalisse or Doptelet? I recently started Doptelet after years on Promacta and it seems to be doing well for me so far. There are some relatively new medications that your hematologist can try if the Promacta doesn't pop your counts up as quickly as you want! Hopefully none of that will be necessary, though, and you won't crash too bad. Keep us posted.

As I suspected, my count was at 8k this morning and I’m starting to bleed. I’ve just been direct-admitted to the hospital. But at least I won’t be on a ventilator, right?

Back up to 36k after one round of IVIG. Apparently, I’m much more responsive to IVIG post-splenectomy than I was before. One more round of IVIG tonight and then discharge tomorrow if my count keeps going up.