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  • mrsb04
Yesterday 17:11 - Yesterday 17:11
Like Mel I would love to know what your doctors consider critical levels. My haemo let me fly from UK to Australia and back saying make sure your count is above 1 before you fly. Not exactly a martial art but cabin pressures have to be taken into consideration.
Doctors cannot order you to stop your BJJ. They can give you advice but is up to you if you follow it.
  • MelA
Yesterday 00:42 - Yesterday 00:46
Hi Taulaum - welcome but sorry you are here.
1st, what did your doctor (a hematologist?) mean when you were told platelets were at "critical levels" - that has different meanings with different doctors I'd think (my hematologist in Hong Kong would panic if my count went down to 40k it was all over the place when we lived there).    What was the "critical levels"?   When is your next count?

I've never had a hematologist (and I've had one here, in Tokyo and in Hong Kong) tell me to stop doing this or that, not even skiing.  Some on here have been told not to shave, not to use a knife in the kitchen - no comment.  

Since I don't know what your count is I can't have an opinion :)   And believe me I'd not tell you what to do!!  My ITP showed up in 1989, prednisone and then 1 IV of WinRho a few years later after a crash got my count to a decent, not normal, count. 

I am smiling because you are doing Brazilian Jiu Jitsu with your children training with you.   My son and wife are both 2nd degree black belts in Kenpo (Kempo) Karate, want to say Hawaiian Kenpo Karate, their children a boy almost 12 and a daughter 15 train with them and both are junior black belts (adult blue belts) - all 4 have been in tournaments in our State..  In order to go for the next degree black belt in Karate our son must go to a different discipline but I can't recall how many belts he has to earn before going back to Karate and working towards his 3rd degree black belt.   My son is now doing Brazilian Jiu Jitsu!!   A couple days ago his toe got caught in his opponents gi and now he is waiting for an appointment with an orthopedist to see if it needs a pin - last month he got a black eye.   So I can see why your hematologist has said no BJJ - do you think he probably means until your count gets to a better number?   

I for sure understand what BJJ means to you and your children, I am proud of you all and admire your dedication!!   I really hope you don't have to be away from it for too long.  Can you still teach?

Please keep us posted as to how you are doing and what your count was and is after the dex !     I sincerely wish you all the best!!

  • Taualum23
19 Jul 2024 09:00
Hi all, I was diagnosed with ITP in 1987, at age 13.  Platelets as low as 7.   DId steroid treatments with short term efficacy, and IVIG with the same.  By about age 18, my platelets had stabilized, and most tests were between 50-70K.  Not normal, of course, but high enough to live a normal life as long as I kept an eye out for bleeding, bruising etc.  Being that wonderful mixture of both a teenager and a bit of an idiot, I took up rock climbing and did it at a pretty high level until I was about 35.  Managed to avoid any bad injuries.  For the past approximately 15 years, I have been training (and now teaching) brazilian jiu jitsu.  My children both train with me, and it is a very, very large part of my life. 

Now, about 6 months ago I had a  colonoscopy that showed some pre-cancerous growths, so they needed to do a repeat pretty soon.  Before that repeat, my counts came back below 30.  So, two more rounds of IVIG, and the counts were over 100, and they could do the repeat.  All is good.  Yesterday morning I got blood drawn, and got the call from the doctor to immediately head to the ER because my platelets were at "critical levels".  They have started me on high dose Dexamethazone and sent me home with more of that and orders to talk to my hematologist promptly.  And a pretty firm "no more martial arts." 

So...if anyone know BJJ, if you aren't "rolling" (Sparring), or competing, with a gentle/understanding partner, the chances of head impact of internal bleeding due to organ impact or broken rib/bone is rather low.  ANyone ever face something like this?  A (seemingly) over cautious medical practitioner telling you t o stop doing something that is so central to your life?    
  • MelA
11 Jul 2024 00:47
Replied by MelA on topic Hemangioma on Spleen?
I just figure that if there is something to worry about my doctor/s will let me know.

That's why I really like my HMO, only the one portal and every doctor I have can see test results and emails to/from doctors, prescriptions, communicate with each other and me etc.

Things sound ok, an d your spleen is normal size - glad to hear that!! Good you have that October appointment so you can discuss things with your hematologist - make a list of your questions to take with you :)
  • SHamlin
10 Jul 2024 14:13
Replied by SHamlin on topic Hemangioma on Spleen?
Update: ultrasound report popped in my medical portal this morning and was consistent with what tech said although it didn't even mention the cyst on my kidney. Just measurements of everything and mention of "a few" hemangiomas ('hyperechoic lesions') on spleen, the largest of which is 1cm in diameter. My spleen is in a normal size range (9.9cm) based on what I read online. I already sent the report to my hematologist, who replied recommending a repeat sonogram in 6-12 mos to make sure hemangiomas remain stable in size. I already have a standing appt with him for Oct and he said we could discuss further at that time. I look forward to peppering him with questions about it!
  • SHamlin
10 Jul 2024 09:10
Replied by SHamlin on topic Hemangioma on Spleen?
Thanks for your response.  I actually really appreciated the tech giving me that info.  She literally said that she hates when patients go away thinking they are dying or have something seriously wrong when they don't, and having to wait on their doctor for results.  The thing on my kidney was a cyst by the way, not a tumor.  She said they are extremely common particularly in folks over 50, which I am.  On the hemangioma on the spleen, it was kind of hard to miss that she was taking extra time and effort to get a good image of something since she kept having me change position to try to get a good angle on it. I said, what are you looking at, and that's what she told me.  Hey she told me not to google it when I got home, but you know I did!  I am not really stressed about it, and find it very interesting given my chronic ITP that there actually is something going on with my spleen. It's almost a relief to be honest because as my original hematologist explained, "ideopathic" just means there's no known cause, which personally I find frustrating. If you google "hemangioma on spleen" you will see it's considered 'rare' but doesn't require treatment unless it ruptures (also rare) or causes symptoms.  It will be interesting to get the report.  I've already messaged the GI place asking about the results because I've checked all my medical portals (general, GI, hematologist) and it's not showing up anywhere, although the appt shows up under my general because it's through that hospital system.  I hate having all these different portals to log in to!  

Other interesting factoid:  'strawberry' birthmarks on the skin are hemangiomas!  They're a build-up of blood vessels.  Mine just happens to be on my spleen.

I'm mentally prepared for them to order further imaging on my spleen but we'll see.  
  • MelA
10 Jul 2024 00:42
Replied by MelA on topic Hemangioma on Spleen?
That tech had no business telling you that you have a benign tumor on your kidney - how does she know it is benign? She had no business telling you that you have a hemangioma on your spleen either!! She had no business whatsoever telling you any of that, shame on her !!!

Will the ultrasound results also go to your hematologist? If not, they should. Also now your GI doctor and your hematologist should probably be in touch with each other.

And if I were you I'd call my hematologist and let him know about the ultrasound and what the tech mentioned and ask him to get with my GI doc to go over the results and also ask if I need to be worried about what I was told.

I recently was given 4 days of prednisone only because I needed gum surgery and my count for some unknown reason had dropped to 57k and my hematologist wanted it a bit higher for the surgery otherwise he wouldn't have treated for that count. I can't even recall what count my hematologist says needs treating. Oh and a number of years ago I had the real flu, my count increased to 401k & I was told I was cured (knew I wasn't) and a week later the count was back down.

Keep us posted please - I'd not heard of hemagioma on the spleen. But today an ITP friend had a splenectomy due to his spleen becoming very enlarged - hopefully he will get an answer from the pathologist as to why this happened - he's had ITP for a long time.
  • RR01
09 Jul 2024 11:09
Replied by RR01 on topic Promacta treatment
I have been on 12.5 mg alternate days and the count hit 25k so the Doctor asked to do 12.5 daily Promacta. Hope it brings up the count to 50K at least. Fingers crossed. What is the Promacta dosage that everyone is/has been on?
Thank you.
  • SHamlin
09 Jul 2024 09:50 - 09 Jul 2024 09:51
Hemangioma on Spleen? was created by SHamlin
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.
  • Dave
07 Jul 2024 18:31
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.  
  • MelA
07 Jul 2024 13:00 - 07 Jul 2024 19:04
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 :)
  • Dave
03 Jul 2024 16:01
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.  
  • MelA
03 Jul 2024 11:56 - 03 Jul 2024 11:57
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!!.
  • Dave
02 Jul 2024 10:26
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. 
  • MelA
28 Jun 2024 14:38
Replied by MelA on topic Pre-menopause/Menopause
Yeah, a lot confuse petechiae for hives. Actually my petechiae started on my belly, then legs.

You are right about regretting looking up medical photos - I just had my 3rd bout of shingles, this time on my face/head on the right side - I looked to see what photos were out there of facial shingles and decided not to do that ever again.
  • mrsb04
28 Jun 2024 04:06 - 28 Jun 2024 04:22
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] [/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 
  • arsh1425
28 Jun 2024 01:07
Replied by arsh1425 on topic Pre-menopause/Menopause
The first question my doctor asked was about petechiae on my lower legs area. She even looked to confirm. I never had that.

Yeh don't look up hives. I always regret looking up medical pictures. Ha
  • MelA
28 Jun 2024 00:29
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!!
  • MelA
28 Jun 2024 00:24
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, also the mayo clinic - there is so much wrong info out there stick with the good ones.   
  • MelA
28 Jun 2024 00:05
Replied by MelA on topic Pre-menopause/Menopause
Oh I don't need to look up hives online - I've had them and they are no fun at all!!    The reason I asked is because some ITPers say they have a rash when it really is petechiae.
You have been through the wringer haven't you - I sure hope things will calm down for you.  You are listening to your body and that is important.  Good luck and keep us posted!
  • Dave
27 Jun 2024 11:55 - 27 Jun 2024 11:56
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.  
  • CindyL
27 Jun 2024 09:25
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.
  • swijung
27 Jun 2024 08:42
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: looker sease-information.html

Thanks in advance for your support and advice!

Respected community member
  • arsh1425
27 Jun 2024 01:48 - 27 Jun 2024 01:54
Replied by arsh1425 on topic Pre-menopause/Menopause
Swijung- Glad it helped you:)
  • arsh1425
27 Jun 2024 01:46
Replied by arsh1425 on topic Pre-menopause/Menopause
I started getting itchy hives(rashes) all over my body. My arms and inner thighs were the worst and back area. They would fluctuate but always popping up daily. It was sudden- the dermatologist and doctor could not say why because I didnt start anything new or come into contact with anything new. This went on for over 6 months. Clariton made me dizzy and so did Zyrtec. I'm a very sensitive/allergic person so couldn't really take anything and either way I wanted to find the root cause.

Anyways, after months of research I discovered that low estrogen causes skin changes in menopausal women causing itchy dry skin and in some hives/rashes.

I connected the dots that maybe my body was reacting this way to estrogen levels dropping and my platelets were also affected hence the gradual drop over the years. So I took a chance and its working so far. I'm going in for another blood test July 20 to see if I stay steady or if my platelets have dropped again. Lets see what happens.

I would need to get blood work done every three-four months to confirm that the estrogen is working - that it wasn't a fluke. I was going to wait to post anything until I've had at least three tests to confirm or a year has gone by but I wanted to see if there were any other women going through the same issue.

If I stay steady for over a year- then only can I confirm without a doubt that estrogen levels was the cause. I may have to adjust estrogen levels as time goes on though.

Look up hives pictures online- big patchy ones- that was how mine looked.
  • MelA
27 Jun 2024 00:24 - 27 Jun 2024 00:24
Replied by MelA on topic Pre-menopause/Menopause
arsh - when you say hives what do you mean?

  • swijung
26 Jun 2024 05:23
Replied by swijung on topic Pre-menopause/Menopause
I have not experienced anything yet but thank you for sharing me your experience it helped me a lot.
  • MelA
26 Jun 2024 00:37
Replied by MelA on topic hair loss
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
  • MelA
26 Jun 2024 00:35
Replied by MelA on topic Question for Jeff
swijung Jeff is a great guy - very helpful and nice to boot :)   Any problems let him know.
  • swijung
25 Jun 2024 02:31
Replied by swijung on topic Question for Jeff
I also check this link. It is helpful!
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