Yeah I also experienced some stomach troubles initially when the MMF was started but just like you my body got adjusted to it in a month. I have been on mmf since last year and my docs were also going to taper it and end it by this year's end. But unfortunately I had this cold and crash and now again one step up for the next two months.
I am quite surprised to see that the medications you received are similar to what i received ( except for the fact i received an ivig course due to an invasive C-diff Infection).
I wanted to ask what was the tapering regime your doc followed? And did you have anything along with mmf like some dietary changes and did you take mmf empty stomach or with food? My doc says you can take it either way , it does not affect its absorption a lot.
And what I think I experienced were not some side effects of MMF rather something like a panic attack. I havent experienced anything like that since.
BTW this is my treatment regime
1g - 2 weeks ( no response)
2g- 6 months ( count b/w 100-120K)
1.5g - 5 months ( count b/w 150 -200k)
1g - 2 months till now but crashed due to cold otherwise the plan was 4 months 1g and then 2 months 500g and then stop it

So sorry to read what you've been through! I hope MMF will help you.
I took MMF for about a year, after "kickstarting" my platelets with prednisolone from a low of 12k. I started on 2000 mg MMF a day, and I did have some side effects, upset stomach and some nausea, but not the tingling you described. This was only in the early stages - my body seemed to get used to it and after 6 weeks (ish) I had no problems with it. But - nb - my haemotologist said I was lucky, many patients have much more severe effects. I was told it takes 2 months to take effect. I took that high dose for I think nearly 6 months, and then gradually reduced it. My count has stabilized (for now) at around 70k and I haven't taken any treatment for about 4 months.
If the side effects are manageable it's worth perservering with the treatment. But it seems everyone's experience is different and there are other options if MMF doesn't suit you

Aaklon I know nothing about Cellcept at all as I've been lucky to just have had to use prednisone & WinRho for treatment.
Would what you felt yesterday be side effects from Cellcept?

This is my very favorite site to look up drugs [supplements too], maybe it can help you - sometimes if looking for the brand name it will give you the generic name to click on to read about the drug. medlineplus.gov/druginformation.html

I'm still hoping mrsb sees your messages - she is very knowledgeable and doesn't mess around.

Thanks for your wishes.
Yeah it is cellcept. And yesterday the doc again me put me on 1.5g for 2 months. According to him It must be due to cold only. I do have a gut feeling that my count will go up again but yesterday i had a very strange experience. I felt like throwing up and had a tingling sensation in my abdomen like the one that happens when we get way too excited but actually it felt not good. I also had a feeling that my heart was beating faster. It alleviated after i took deep breaths for few minutes and then slept. Hoping it was just something random and wont happen again.

Aaklon you have not wasted anyone's time! Your story is unreal, you have been through so much for a 19 year old, bless you!
I believe MMF is also called CellCept but I'm not sure. If so, yes there have been ITPers here who have been treated with CellCept. I cannot help you though as when I was diagnosed the only treatments available were splenectomy or prednisone - I took prednisone, later when a tetanus booster dropped my count I had a WinRho IV.

Hoping that mrsb will see your message, she is an ITPer and also a retired renal nurse. Please keep us posted on how you are doing, I too hope your platelet count will stay at a decent level. Take care!!

So I have been a silent reader for more than one year since i was diagnosed with ITP. Before beginning I would like to describe my unusual story of ITP.
So 2 years ago around mid-August I got HFMD ( HAnd Foot Mouth Disease) and after a weak all my ulcers healed. Post that in September I was diagnosed with Acute Hepatitis with a Total Bilirubin Count 7 which i and my current doctors think was caused by the same HFMD that i had the prev month. Moving on to October I had developed Acute Pancreatitis was treated in a local hospital and discharged after 10 days. And in a period of 3 months around mid January my liver enzymes went back to normal and i was weaned of the medication. Note that during this entire period I had Platelet Count between 250K-400K. As I felt that life was getting back to how it used to be, i was unaware of the fact that my fate had something else written. So last year in mid feb that is after 1 month after being off medication, we travelled to my grandpa's house. I dont know whether i contracted while travelling through the train or before or after that, i developed a fever after 2 days of reaching my grandpa's house. We all thought it was some normal infection but it wasn't. 
In the next two days I developed Shortness of breath and chills and we rushed to the local hospital. I remember I had elevated Bilirubin which i thing was due to fact of taking paracetamol every 6 hours which i still regret due to consultation of our family doctor along with a 70K platelet count (this was the first time in my life i had low platelets)high neutrophils and very low absolute lymphocyte count. I was also tested for some common viruses like malaria dengue etc. which all indicated no current infection due to this viruses. I was happy that I had no such virus and was reassured by the doc it was just some normal viral infection and my counts and liver levels will get normal once i get fine. But things took a wrong turn. The next day I did not have much of fever as much as i remember it was not above 100F however contrary to what i thought my body had actually lost the fight. In night I could not sleep had pain in my left hypochondrium. My morning i could not even move i had vomiting. I could not even breathe. Upon reaching the emergency i was admitted in saturation. I had subconjuctival haemorrhage in both eyes, very high pulse rate, very low bp, 20K platelet count, 9 hb, 3k wbcs, 1500 ferritin, high liver enzymes, high creatnine, high triglycerides, high crp and i dont remember what more the only thing which i was told was i will be fine and later found out that my parents had been told that it was nearly 10% chance based on my results and symptoms that i would survive and i managed to pull it off . I was diagnosed with Secondary HLH and ARDS. Was started on 2000mg Pulse Prednisone, Broad Spectrum Antibiotics and was on Bipap Support upon which i heard the docs saying that if i dont improve on it i would on a ventilator so i pushed myself as i did not wanted to ventilated. Multiple viral and bacterial tests were sent which all came out to be negative. They only didnt sent a blood culture and also didnt do  marrow biopsy which could have actually did i even have hlh or was it something like sepsis. Anyways I soon improved was moved out of the ICU in 5 days and with improved blood results and clean x ray was discharged with antibiotics and tapering steroids (120 mg initially) and with a platelet count of 245K and was referred to one of the best hospitals in our country which is about 3 hour distance from my house for further follow up and investigation so as to detect if i had primary hlh or some other autoimmune disorders.
So two weeks later i visited their rheumatology clinic and was given a big list of tests and cbc along with some nk cell activity perforin tests and few more to rule out primary hlh. To my good luck which i thought that time all tests were coming normal only had high cholestrol as i didnt stop binge eating as i was not told that i did not know anything about steroids at that time.  So I was slowly reducing the dose of steroid and all my tests coming in my favour i noticed blood tinged nose secretions and also multiple red spots in my mouth. My next appointment was month later and i had been on 10mg pred for a while and the day i had to start 5mg pred my sister noticed bruises in my hand and several petechiae. I googled up and found a video about blanching dots on the skin. SO on performing the test myself i found it was no ordinary dots and it was something serious. I went for a cbc and found out i had a platelet count of 8K and MY JOURNEY OF ITP BEGINS - MAY 2023
So i was landed in a local hospital for platelet infusions that did no good and increased my platelets by mere 1K. They could not understand what was going on and I was sent tp the hospital back again where i had my followup the next month. Again loads of tests and infusions which all came negative. Finally a marrow biopsy was done to rule out some malignancy which it ruled out as well. I was sent back to home with an increase in the dosage of pred. I hit 40K and was tapered to 50mg from 60mg and was called to weeks later. But due to my intelligent family doctor i was again in trouble. I was taking PPIs with steroids and i developed some diarrhoea and he told me your immunity is weak so you need to take antibiotics right away and i did what he said and the cherry on top was he even added a small tablet which would cost my family a huge loan that we were able to completely repay the last month and that was loperamide. Within few hours i developed Invasive C-diff and started heaving blood stools. Again a trip to hospital but this time i was referred to the hematology clinic by the rheums. Had a platelet count of 2 and 16 hb to the docs surprise and was treated with a course of ivig for 5 days with vancomycin for c diff which our insurance provider didnt cover. Was discharged 5 days later with 343K platelets and the decision of stopping steroids. I was told to wait and watch and taper the steroids as per their protocol and reach them once platelet reaches below 100k. So the next days after stopping the steroids i had dropped to 70K and visited the doc next day and was started on MMF 1g per day

july 2023 - 1g no reponse 20K platelets
august 2023- 2g started
sep 2023 - 2g had a very bad flu my platelet wen to 90K but sadly dropped to 26K within two weeks
oct - 46-50K 
november - 70k
dec - 90-100k
jan - 120k
feb -120k
march till my last test in august my platelets had been around ( 145 to 196 K) and was tapered from 2g to 1.5g in feb and 1,5g to 1g in july
In august after one month of being on 1g I had a count of 144K
but sadly in the last week of august i had a cold and since than i have been seeing multiple petechiae on my arms and thigh. I thought it will get better in a few days and it did but again i had been seeing some red dots on my arms and i went for a cbc today and had a count of 16K . I dont know what to do. My dad will visit the doc tomorrow let us see what happens. I have not seen my docs since last 11 months as they advised my parents of not bringing to the hospital until i have any problem due to the risk of infections PS i am a young adult (19) M . I had been writing this since the last hour and feel better now. I have had no one to tell my story so i wrote everything that came in my mind so sorry for wasting your time
Fingers crossed hope my counts go up again and i since the last year i had searched and only found a few studies on mmf in itp and not found much about it on the forum. Is anyone being treated with MMF for their ITP solely?

Thanks aileenrh. I am on 12.5 mg and am doing 4 days a week just so that I don't build any dependency on the drug but with ITP we never know. The platelet count is at 30-40K with that and I am fine with that count for now.

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.