I Need Advice on ITP Treatments and Lifestyle Management

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

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.

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.  

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.   
    

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   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 

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. 

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!!.

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 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

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.