I haven't heard of dizziness being a symptom, but fatigue can be.  I did confirm that with my heama doctor.
Maybe someone else will chime in about the dizziness.
Sorry you're going through that.

Hi arsh1425 - how long have you been diagnosed with ITP? What was your last count? Are you seeing a hematologist or just using your PCP (asking because I don't think bleeding is the only symptom, and by bleeding what does he/she mean actual bleeding or brusing or what)? Have you had any treatments?

I've had ITP since 1989 and have never had fatigue due to it but I know others have (we moved to Tokyo shortly after I was diagnosed so I just didn't have time to be fatigued with meeting new friends and so much to see  ).   And I've never had dizziness.  I'm sorry you are having both! If the dizziness is due to ITP I don't know - have not heard of that yet.

I'm sure someone with more knowledge about this will see your post and respond. In the meantime take care and keep us posted as to how you are doing!

Have been on 50 mg daily of Promacta for 2 yrs. now. My platelet counts have been in the 200's and 300's over the last few months. The Foundation will no longer pay for it though as of the end of the year so will have to switch to something else and don't know what. Also thinking that I should reduce dosage gradually beginning with taking every other day.

I feel dizzy and lightheaded everyday since being diagnosed. Sometimes even like I'm going to faint. And of course fatigue.

I asked the my doctor if its due to ITP but he said the only symptom of ITP is bleeding.

Just wondering if anybody else experiences a low level of dizziness through out the day.

I have had a full blood panel work-up for almost everything and even an EKG- everything is normal. Even electrolytes.

Thanks

Well, I consider myself fortunate. Every six months or so when revisit this site just to keep up I feel for those who have been newly diagnosed as well as those who have suffered for years without finding the "right" treatment(s). 

We were never promised a rose garden gozorakgogo (I'd get stuck with the thorns so I'm glad I wasn't promised one) - I sure most of us never heard of ITP before we were diagnosed with it. Prednisone worked for me but not with a count in the normal range. WinRho IV worked for me when a tetanus booster tanked my count. The only certain thing about ITP is that there is not anything certain about it! It wouldn't hurt you to have a count done yearly along with a physical, a smart thing to do for your own good.

What is most unfair about dealing with ITP is the myriad drug and treatment combinations that work well for some and not so well for others. For what it is worth, I ended up in the hospital for 10 days in 2020 with a platelet level of 2. I was 54 at the time and had not been a patient in a hospital since my tonsil removal as a kid in the 70's. I was in really good health and had never heard of ITP which is what I was diagnosed with.

They tried a platelet transfusion(which was doomed to failure) along with prednisone and two IVIG treatment sessions. After 10 days with little improvement they changed that course of action to four Rituximab infusions(over a four week period) along with an Nplate injection with each infusion. I then continued with weekly Nplate injections over the next three months. A week or so after the final Rituximab infusion my platelet levels had finally climbed to well above 100 where they have remained since. I havent even had them checked in a couple of years.

I am one of the fortunate ones I suppose. Now its as if I never had the issue to begin with.

Have you ever taken IVIG while on Doptelet and if so, did your numbers rise dramatically (like into millions). We had that issue where nothing worked until we combined Doptelet with IVIG or with dexamethasone.

After noticing this effect, we started taking Quercetin Phytosome together with Doptelet to see if any immunosuppression from it would clear the way for Doptelet to raise levels. 2 weeks into taking Quercetin Phytosome and her numbers started rising for the first time in almost 1 year without salvage IVIG or Steroids. No other changes were made. It has been a few weeks since taking and her platelets are around 220 and rising. Hoping to lower Doptelet dosage if it continues. I wrote a post on it in the natural treatments forum.

Hello all,
Is anyone on 12.5 mg dosage promacta daily?

Hi.  I found a research article stating red light therapy reversed ITP on mice.  I could not get the link pasted in here so just google red light mice itp.  The article is in the NCBI database.:

So I tried red light therapy for my ITP.  I did 3-4 times a week for a month at home  The light is an LED with 660 nm visible red light and 850 nm infrared.  It has worked so far, with no side effects except relaxation.  Time will tell.  My platelets went  from 93 to 131 on one month.  I also drank one cup of papaya leaf tea 5 x week.  I bought a huge bag of organic super cheap tea bags online.  Some of my immune markers on my CBC also improved a tiny bit, like WBC, neutrophils and a few things that were low.  I got a little more energy and slept a little better.  Hope this helps somebody.  Stay strong, you are beautiful!

My computer bit the dust since I was last here - I forgot to turn it off for the night and the electricity went out, when it came back on the computer just would not start.  Finally have a new computer as of today & am trying to learn Windows 11 after being on 7 for so darn long - so will get back to you soon Taualum !    I was delighted to see that your count went up after the Dex !!    Now don't get discouraged if it drops some, the count doesn't stay the same all the time it moves around.   Not sure I mentioned that when I was diagnosed I looked like I had been beaten in a back alley with a 2x4, count 11k and dropping. 

I enjoyed reading about how much you love BJJ and are now starting Sho Bjin Ryu - will have to look that one up. 

Later,
Melinda

 

This isn’t medical advice in any way, but I wanted to report a natural flavonoid which I believe has helped my spouse.

She had been admitted to the hospital in Oct of 2023 with rectal bleeding and a single digit platelet count. 

She has taken in this order:
1) Dexamethasone - raised platelet counts but dropped rather quickly.
2) Prednisone - maintained longer but dropped eventually to single digits and bleeding.
3) IVIg infusions as salvage but effect only lasted approx two weeks.
4) Promacta - no effect and Alt and AST increased beyond threshold.
5) Rituximab - reduced rate of drop but eventually back to single digits and bleeding.
6) IVIG - again as salvage but would wear off quickly…however after Rituximab, the response would last between 3 and 4 weeks.
7) Avatrombopag - no effect, however when salvage therapy with IVIG was taken, platelets would rise into millions and then Avatrombopag discontinued until platelets reduced into 400 k range. Started Avatrombopag again but platelets eventually back to teens whereas this time took 20mg dexamethasone and would jump back up into 200 range and hold for 2-3 weeks.
Doctor has been unsupportive of taking any natural supplements as is unproven, but after 9 months of nothing sustaining we decided to go ahead and try a combination of 500 mg daily of Quercetin phystosome and Turmeric Curcumin phytosome. 

our thinking was that the immuno destructive/ consumption process once suppressed allowed the Avatrombopag to work. Given these two reported antinflammatory properties, we wanted to see if they would help clear the way for the Avatrombopag. Also with some studies suggesting quercetin Anti CD38 and Stat3 inhibition, which seem to be targeted pathways for some drugs in the pipeline, we figured why not give it a try.

Her numbers started decreasing as expected and went from mid hundreds down to 86 from Wednesday to Friday. At that point we discontinued the Turmeric Curcumin Phytosome out of concern of further drops and its blood thinning properties but continued with the Quercetin. She had started the supplements the previous Wednesday and we wanted to really give them 2 weeks to see if any effect. We had blood work scheduled on Monday and were tentatively expecting to start Fostamatinib the following Friday. On Monday her platelets were at 100. We hoped it was the supplements and continued optimistically. On Wednesday her platelets were at 130…the first time we saw a rise without any Steroids or IVIG. Today (Friday July 26, 2024) her platelets are at 180. 

Her doctor was ecstatic and asked what we had done differently and was skeptical that she had taken a steroid.I Advised that all we did was take the Quercetin phytosome and have been praying a whole lot.

Not sure if this is what did the trick for her, and we pray this response continues, but after 9 months of just life altering refractory condition, we will take this win and celebrate.

For my spouse, her condition seems to be very highly mediated by destruction/consumption and not so much production. Our hope is that we continue to see a rise over time that would allow us to follow the Doptelet dosing schedule down. But even if not possible for now, we are so excited and I wanted to share with you all in the event that anyone may be experiencing similar characteristics worth their ITP and wanted to discuss with their Doctor.

Taualum23
Great news..fingers crossed your count stays up

So apparently the dex worked (at least for the shrot term). My counts from this morning were slightly over 100K! That means I can go back to BJJ tonight, and just need to go back for labs next week to see if they are staying up. THen we';ll need a plan to monitor more closely and perhpas start treatment of another typoe should they fall again. Whew!

Huh, my response just disapeared to you both. My count was down to 9K, when they called it critical. On retest it was 12 and then 16, and with heavy doses of the Dex, I got back to 33K. I've been told that below 30 skiing, BJJ, and rock climbing of any sort are "out." Between 30-50, I have been advised to only "top rope" rock climb (as opposed to lead climbing, which in theory should lower, but not eliminate the risk of head impact or body impacts that could lead to substantial bleeding. "Careful skiing" and drilling, but not sparring (rolling) in BJJ. I actually went to our school's "testing and curriculum" day att 33K and did VERY careful showing of my skills in the curriculum, and watched my eldest get promoted from a youth belt to an adult belt, and was actually awarded a strip eon my own belt despite being forced to show a somewhat limited degree of techniques (no takedowns, no rolling submissions or recoveries, etc).

My next test is tomorrow, which will be 48 hours after the last heavy dose or steroids. Hopefully it is high enough to go back to at least light training, and then plan for more treatment that can get me back about 50-60 and I get get back to really training the way I like. I am hopeful, if not terribly opptimistic for a "quick fix." I am trying to learn about the newer treatments that seem to have been studied in the years since I have been holding steady on my own. Perhaps some of them may help get me where my body needs to get.

I have no intention to stop coaching, as spreading my love the the art is ALMOST as important to me as the devlopment of my skill.

Mel, I love to hear about arts that require other belts to cntinue. My main instructor is an extremely high rank in a few arts, and most of which require at least a blue belt level (if not an awarded belt) in BJJ in order to get to some black belt degrees. I love working with other systems' black belts on their BJJ, as they always have so much to share. I have recently actually started as a white belt in Sho Bjin Ryu, and the instructopr I have been mainly training under is preparing for his 2nd degree, I beleive, so I am learning from him and hopefully helping him with BJJ. That sharing aspect of the martial arts has always been wonderful for me.

Taulaum
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.

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!!

Melinda

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?    

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

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!

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.  

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.

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.

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