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?

Does anyone have ITP AND End Stage Renal Disease and is on Hemodialysis.  I have Polycystic Kidney Disease which caused my kidneys to fail and as a result I am on Hemodialysis.  I also have been diagnosed with ITP with no successful treatments so far.  I am wondering if the ESRD has more to do with my problem with low platelets than the ITP.  Maybe I don't have ITP ?????

I took Doptolet for about 2 1/2 months. For a while it seemed like it was working and then it stopped

Hi Lul92,
I would post this up in the Adult section in General ITP Discussion - more people will see it there!
Good luck to your son, I hope he continues to have a good platelet count!

Wtow I am so sorry that happened to  you, and after that happened I'm even more sorry that your hematologist decided to try a smaller dose - bless you!!

WTow  Thanks for the link. How long were you taking Avatrombopag for? 
 

Hi everyone 
my son was diagnosed with itp last month. He had a fever and cough few weeks before he was diagnosed. He also had nose bleeds 1-2 weeks before his diagnosis. His count was 15K. 

Today and just 1 month after diagnosis his count is 150K … he didn’t receive any treatment.

But the thing is that I’m almost sure that he also had itp several months ago. When he started having nasal bleeds (9 moths ago). The nasal bleeds always happened after flu symptoms. 

Has anyone tried something like this- I mean itp only when sick and spontaneous remission?

The WinRho first caused me tot have the chills, then a fever of 102.2 and severe kidney pain (I have Polycsytic Kidney disease and am on dialysis) and weakness to the point that I could hardly walk. The dialysis center sent to the hospital. Not much was done other than observation.
About 3 weeks later I tried a weaker dose of Win Rho and I had negative results again including severe kidney pain that resulted in ruptured kidney cysts, hematuria and my HgB dropped to 6.6

WTow I would be interested in what happened with WinRho that put you in the hospital twice!!   I had one IV of WinRho about 22 years ago after a tetanus booster sent my count to the gutter - that one IV brought my count to a decent level and basically a steady count (not in the normal range but a good count).  I had no problem with WinRho - it was given as a slow drip IV not a push.

Thank you in advance !  
 

Hi, MelA-- and thank you for your response. We've changed pretty much all of our soaps, etc. and it hasn't made a difference. We appreciate your empathy, though-- it helps! Best, JandS

Here is the article www.ncbi.nlm.nih.gov/pmc/articles/PMC6058053/
Yes we tried Doptolet and followed the manufactures dosage regime.  The highest my platelets got were 32000