I was diagnosed with ITP almost 15 years ago and have been considered "low but stable" and not requiring treatment ever since.  My counts have ranged from the low 80s with occasional dips into the low 50s.  Covid vaccine had no impact but when I finally got covid in March of 2023, my platelets shot up to 115 (immune response) right after, and then back down into the 50s, where they have stayed ever since.  

I have been having some GI issues and my GI doc just ordered an abdominal ultrasound to check my liver and gallbladder as well as my spleen because all of a sudden she's concerned about my low platelets (!?) Full disclosure, I do not have the report on the ultrasound yet (just had it yesterday) but the tech told me I have a benign cyst on my kidney and also a hemangioma on my spleen.  She said neither was anything to worry about, but not to tell my dr that she told me anything, lol!  And not to google anything!  

Of course, I've been all over the internet trying to find out if the hemangioma could be related to my ITP but am coming up empty (other than some kind of rare syndrome that seems to affect infants).  

Has anyone ever heard of this, or had any experience with it?  I'm a little frustrated because my hematologist has been very laissez-faire about treatment, just monitoring things, which is fine, except when I had the covid-related increase and decrease, he started talking about actual treatment to bring my platelets up for the first time, and I had to remind him that that precipitous rise and drop was covid-related, and statistically not that significant.  (would be nice if he would read his own notes on past appts, but I digress!).

I don't have significant symptoms from my ITP which I guess is the other thing that has helped me avoid treatment over the years.  Except for the occasional petechiae.  I'm just now super curious that I have had ITP all this time and now am finding out there's this hemangioma thing on my spleen.  And I guess worrying a bit that this is going to stir things up with my hematologist and he might pressure me to start treatment (or even get a splenectomy?)

Thanks for listening and for any thoughts or experience you might be able to share.

Sounds like you and your son had some great times at games.  I’m glad your gum surgery went well, but sorry to hear about the shingles.  Hopefully it does pass fast.  I’m glad your count is at least back to decent and hope it always remains at least that good.  

Dave our younger son would give me 2 tickets to a Rockies/Cardinal game for Mother's Day and the 2 of us would go to the game dressed in both colors, one of us would wear a Cardinals hat & the other a Rockies hat - it was so much fun!! Now I can't walk that far [to seats] so unfortunately that is no longer an option to go to the game.

My ITP journey is decent, thank you. Except recently for some unknown reason my count dropped a week before gum surgery so I was put on 4 days of a low dose of prednisone - gum surgery went well  , and a couple days later shingles appeared on my face  .   I was not concerned about the gum surgery but it stressed my body and stress can be an immune suppressant, prednisone is an immune suppressant so the combination was a perfect storm and allowed shingles to surface. This was the beginning of May - my count is below norm but good, I still have shingles pain on head/forehead/eye. This too shall pass - fast I hope

She is.  We had a fun trip to St Louis 2 months ago for the Sox vs Cardinals series.  Aside from that weekend, being in different leagues does make it very easy to cheer for each other’s teams.  

Thank you for being happy for my counts.  I hope your ITP journey is going well also.  

Dave your wife is a true baseball fan    My friend in Chicago is a Sox and Cardinals fan - that makes it a bit easier doesn't it since both are different leagues.  I hope sometime the 2 of you will be able to make it out to Denver to see our beautiful stadium for a Rockies/Cardinals series!

I am justso happy for you that after 13 years your count is still good - that is fantastic!!.

Thank you MelA.  I was raised right.  My wife is a huge Cardinals fan so we cheer for them together, especially against the Cubs.  Coors Field looks amazing on TV and it is on our bucket list to visit for a Cardinals series. 

swijung   Welcome, ITP can be daunting but you will get to grips with it. 
 As others have said everyone is different. Meds that work for some don't for others. I've had ITP for 10 years and tried several treatments.  Some have worked, some have not, some have worked for a while then stopped working, some worked but the side effects were intolerable. I still have my spleen. I am not parting with it. It is a healthy organ doing its job properly. 

I trust you are having investigations to discover if your ITP is caused by reduced platelet production  or increased platelet destruction.

Latest guidelines suggest steroids should only be used for a maximum of 6 weeks at diagnosis.
There are many treatments to choose from, the link is lengthy but  worth reading. [url] pdsa.org/images/InternationalConsensusReport2019.pdf [/url] . Make sure any consultations you have are a 2 way discussion process. Do not let medics dictate to you. The more informed you are the better you can fight your corner regarding treatments.  Regarding dietary advice eat what you want. There are many hypothetical theories regarding diet  out there but  there is no sound medical evidence to support them.    Most importantly  ITP  is an inconvenience and can be irritating at times but do not let it take over your life. However I would not recommend you partake  contact sports.  
Hope you get sorted out 
NB I have formatted this  several times so flows better but once submitted it changes the layout. I have screen shotted and will send to the IT guy Jeff 

Dave - it is nice to see you are a Sox fan and not a cub fan  - I bleed Cardinal red since grew up in St. Louis, and am also a Rockies fan (guess I go for the losers).  You are amazing I think and I'm so glad your counts are normal now!   Take care!!
 

swijung as mentioned we are all different, and the only thing certain about ITP is there is nothing certain about ITP 
I've dealt with ITP since 1989 and the only treatments known then were prednisone and splenectomy - later found out IVIg was also a treatment but glad I didn't know because most likely the cause of my ITP was a gamma globulin injection required by my husband's company in order to go to Tokyo to find an apartment to move there.   Between getting ready for the move and selling the house I didn't really have much time to think of ITP except to make sure I'd be able to get a hematologist in Tokyo (I was able to and small world, he knew my hematologist here).    I really don't know what to tell you - I was 11k and dropping when diagnosed and looked horrible from the bruises - I chose prednisone as treatment because a splenectomy would not guarantee a cure so I didn't want to remove an organ that was just doing it's job of cleaning the blood.     Nowadays I rarely don't even think of ITP unless must, like when I had knee replacements and gum surgery.   The only thing I've given up is skiing many years ago as I wanted to keep my bones in the same shape as they were when I was born - but really nothing else, I do check new meds to make sure they won't mess with my platelets.    You will learn to not let ITP rule your life.   May have told you already, we moved to Tokyo shortly after diagnosis and while I was on 60mg fo prednisone, once there I'd even ride my bike to the hospital where my hematologist was, never even thought about maybe I'd fall - we went into China, Thailand, Macau, Singapore and more and I really never even thought to get a platelet count first.  We moved from Tokyo to Hong Kong before moving back to the States.  I didn't want ITP to tell me what to do nor did I want to miss out on the opportunities of this move.  My only treatment, so far, has been prednisone and 1 IV of WinRho after a tetanus booster sent my count to the gutter - I have a decent count but usually not in the normal range.  Recently my count dropped to 57k, I'll never know why.       When looking online be sure you go only to legit sites - one I like is medlineplus.gov, also the mayo clinic - there is so much wrong info out there stick with the good ones.   
    

I remember vividly the whirlwind around my ITP diagnosis in 2011. It’s a tough time, but will make you tougher for getting through it. For most adults who get diagnosed with ITP it’s something that stays with them long term, but most find a treatment or treatments that work. I was one of the few lucky ones who got over ITP quickly without losing my spleen.

I was hospitalized with a platelet count of 1 and petechia and bruising all over. 5 days later I was released with a count of 40. Within a week my count was normal and has been ever since.

In the hospital I was started on a heavy regimen of prednisone and given IVIG twice. The second IVIG treatment stopped the platelet destruction. For most people this is a temporary fix, and I knew that, so I stayed with my prednisone regimen all through the slow taper and also took a PrevPac to eradicate H Pylori. American studies showed eradication of H Pylori was useless, but some foreign studies showed it helped sometimes. It was worth a shot and I might have had a foreign strain of it. Praying helped me a lot too. Every CBC I’ve had since has showed my platelets in the normal range.

I had no side effects from the IVIG. Prednisone was like being on a caffeine high all day. I had a ton of energy and needed less sleep. I liked it, but the long term effects would have been bad so I’m glad I tapered off of it. The PrevPac did what you would expect, but nothing more. The ITP experience made me a better person and prepared me to handle tough situations going forward. It also taught me to do my own medical research since the local doctors didn’t specialize in ITP and were just following a published treatment guide. I saw a GI doctor to get my PrevPac.

Good luck to you with finding something that works as quickly and minimally invasive as possible.  

Hi swijung.  First thing to know is that we're all different, so responses to treatments may vary.
For me, personally, I have tried WinRho, Prednisone, IVIG and Rituxan.  Also had a splenectomy which worked for about a month, then went back to being low.  Finally did Rituxan in 2011 which put me in remission.
With the Prednisone, I gained a ton of weight and had some nasty mood swings, which was one reason I went with a splenectomy.
I didn't have any side effects from the IVIG until after the splenectomy; wicked headaches and nausea were the worst.
Since 2011, I have lived my life normally.

Hi everyone,

I just got hit with a diagnosis of ITP, and let me tell you, it's been a whirlwind. I'm trying to wrap my head around everything, but there's just so much info online, it's hard to know what to trust.

That's why I'm reaching out – has anyone else here been dealing with ITP?  I'm particularly confused about the treatment options. I've seen stuff about steroids, IVIG, and other meds, but I'd love to hear real-life experiences.  Did they work well?  Any side effects I should be on the lookout for?

Beyond treatment, I'm curious if anyone has found any lifestyle changes or natural remedies that helped.  Diet, exercise, stress management – anything that's made a positive difference for you?

Honestly, the emotional side of this whole thing has been tough. It's been a real rollercoaster.  Just connecting with others who understand what I'm going through would be a huge help.
I also check this:  www.pdsa.org/patients-caregivers/di looker sease-information.html

Thanks in advance for your support and advice!

Respected community member

swijung welcome to the forum. You are losing your hair? I've just never heard of that on here until now. I hope you are doing well

swijung Jeff is a great guy - very helpful and nice to boot    Any problems let him know.

I also check this link. It is helpful!

I also facing the same problem.

I'm sorry mrsb - I figured with your background someone with renal problems would be happy to have your knowledge & experience passed on to them.       I appreciate you and I don't have renal problems!.
 

Well said, mrsb

That's a 5 stage protocol starting at stage 4 then going back to stage 2. As you appear intolerant of my questions I will not communicate with you any more. I hope you get sorted out.

Thank you mrsb - I was hoping you would see this thread since you are/were a renal nurse!

Hi, everyone

My son is 18 years old, he was recently diagnosed ITP. His platelet count dropped to 16 in a month but he didn't have symptoms.
Does anyone have any recommendations for a great ITP doctor near Pennington, Princeton or Lawrenceville NJ?
Thanks!

I'll try this agian: According to Tabke 2 ;IF PLATELETS ARE LESS THAN 50 AFTER AT LEAST 2 WEEKS INCREASE THE DOSE LEVEL PER TABLE 3.  Wait 2 weeks to assess the effects of each regimes.
At no time did my platelet level get any where near 50.
1 st 2wks took 20mg per day
2nd 2wks took 20mg 2 x wk for 2 wks
3rd  2wks took 20mg 3 x wk for 2 wks
4th 2wks took 40mg 3 x 20mg 4 x wk for the same 2 wks
5th 2 wks took 40 mg daily for 2wks
TOTAL OF 10 WKS (2 1/2 MONTHS)

AT THAT TIME MY PLATELETS WERE STILL WELL BELOW 50 WITH NO SIGN OF RISING SO AS PER DOPTOLET WE STOPPED TREATMENT. 
Actually Doptolet says: Discontinuation: Discontinue DOPTELET if the platelet count does not increase to greater than or equal to
50×109 /L after 4 weeks of dosing at the maximum dose of 40 mg once daily.

The highest reading I got was 36 one week and then it went back into the 20's.  Just no signs of working
 

I am fully aware of the dosing regime. I have been on it for over a year. I was  just wondering if your protocol was different to over here in the  UK. It appears it is the same but I was puzzled as you said it took you less than 12 weeks to reach stage 6. 
 

If you go to this website   doptelet.com/themes/pdf/prescribing-information.pdf    and download the PDF and look under sections 2.1 and 2.2 you will see the prescribing info.  That is what I followed

So you did all 6 stages in 2.5 months. 

No Heparin
Again, I followed what the Doptolet manufacturer said. You started out taking Doptolet on a stagerd regimen and the worked up to an every day routine

Did you regularly change doses or give it a few weeks at each dose ? I only ask as my dose kept getting changed and my count was all over the place. Then a consultant pharmacist suggested I stay on the same dose for about 3 months to see what happened and my count levelled out.  

Do you have Heparin on dialysis?

I followed the dosage recommendations from manufacturer which were different over the time I took Doptolet

I was a renal nurse for many years.
Haemodialysis itself does not lower platelets but if you are being anti coagulated with Heparin during your treatments you may well have developed HIT, (Heparin Induced Thrombocytopenia). In which case you will need to try something like Lepirudin instead of Heparin.

Did you have multiple different doses in that time?