Hello ITP forum.  I am so happy that this group exists.   I am new here and working on research with my sister.   She has become a medical mystery.  She has a low platelet count, most of her platelets are immature and her blood will not clot.  She has almost died twice in the past 2 years before we realized that she had this issue (whatever it is).  The issue has developed over the past 2-3 years.  When you look at all the many cancer and non-cancerous clotting deficiency diseases, she has some symptoms but not enough of any pattern to have a diagnosis.  She has had loads of tests, including factor tests and bone marrow biopsies, multiple times.  Four different doctors at different medical centers have given up on her, including Moffit in Tampa.  Her arms all full of bruises from simple pressure, and her blood will not clot.  She has been ruled out for MDS.  She ‘may’ have ITP but has only a couple of the symptoms.   I am here asking advice.  When your case is not clear cut, where do you turn?  We are in the Tampa/St Pete area of Florida, and hunting for a Hematologist or any other doctors who will engage
with the puzzle and stick with it.    I even wonder if she had a reaction to the Covid vaccine, but who can help prove anything? We feel caught in the medical machine, but with no answers.  Can anyone offer advice?

Sorry It's been so long since I replied if anyone reads this I did not have ITP, I had aplastic anemia(bone Marrow Failure). I had to do a bone marrow transplant in February, Right now my Platelets are around 200. This forum was a big help during my early diagnosis. Promatca helped to hold platelets transfused until I got my bone marrow transplant. I'm waiting for other blood counts to continue to rise as I type this. It's going to be a tough journey but thank you everyone here for your help the last year.

Count now 5. Avatrombopag reinstated at 20mg on alternate days 

I got two bracelets from Amazon. On front has my name and ITP low platelets and no BP cuff (because of lymph removal.)
On the back has hubbys name and phone and my blood type and dr. I wear every time I leave the house.

Lman - curious what you decided to do!

A much better count mrsb!  This ITP is just one big guessing game isn't it?!
Hope things settle for you!!

Here's hoping you get to your comfort zone soon.

Cindy
I'm always twitchy with a count above 100. All those big juicy platelets circulating around my system. 
Physically I'm fine. 

Are you comfortable with that number, mrsb?  How are you feeling?

Count down to 243, Avatrombopag on hold until it is below 150.
As planned Fostamatinib reduced to 100mg twice daily, and Pred down to 3mg/4mg alternating for a couple of weeks then down to 3mg daily. 
Continuing  with weekly bloods and back to clinic in 3 weeks. 

My experience was different.  I had several reactions during the first infusion, but got through it.  That evening and the next, I ran a low-grade fever and felt flu-ish.  The second infusion was much smoother, but I developed serum sickness afterward and never took the last two. 

Each Rituxan experience is probably as unique as the person who undergoes it, and no one can predict what it will be.  I hope you're feeling good by now and will have few problems going forward.   Most of all, I wish you success from having done it! 

Hi. I had my first of four Rituxin infusion on Wed.  Had a reaction 3/4 way through.  Finally finished after a push of Benadryl and was sent home. Thursday I felt good. Was able to drive. Friday, I am dizzy, lightheaded, no energy, and emotional. Anyone else get delayed side effects? How long did they last?  Thanks 

Good heavens mrsb - you win the prize - oh my word!   Bet you never thought you'd see over 400k!!
Let us know what tomorrow brings!!

WOW!  That's quite a jump!  Hopefully your doctor(s) can get the correct dosage for you soon!

 Avatrombopag is now on hold as the increase in dose sent my count over 400. 
Count repeating  tomorrow 

From what I can find it has not got FDA approval for ITP. It certainly isn't licensed for IT over here.
There does seem to be quite a bit of research going on regarding treating ITP with it however. 

Another week till you see your consultant, right?  Will be interesting to see if the increased Avatrombopag has helped.
What are we going to do with you     Sorry to hear the side effect of Fostamatinib is causing trouble!   Take care & keep us posted please!!

Lots of "common side effects".
Has this been FDA approved for ITP or is it being used off label?

See links below:

(PDF) Long-term complete remission of refractory severe idiopathic immune thrombocytopenia (ITP) treated with daratumumab (researchgate.net)
Daratumumab as a novel treatment option in refractory ITP - ScienceDirect

I wish that is the case. But his titre seems a bit high at 1:320. We will see what his hemo will suggests.

A virus such as the common cold can produce a temporary positive ANA.  

More test results are coming back today. I am really frustrated now. His ANA is positive, but dsDNA, Anti-SM, and Anti-RNP are all negative. Don't know what to think now. Waiting for our appointment with Hemo next Tuesday.

Well darn it th - would have been nice if the prednisone had increased your son's count to a decent level - how long was he on it?
Good you are getting some blood test results that are normal - hope that continues.  It does seem that so many new ones here that were just diagnosed have been bombarded with many treatments all at once, the body can't like that (my opinion).  Maybe it is good to hold off on treatment for a bit to see if he may rebound on his own but watch closely for symptoms.  Boy it would be a blessing if his count would rebound to a decent level - fingers crossed for him!!

I've had ITP since 1989 and I certainly do not daily check for anything - I'm happy to be getting out of bed and being on the right side of the grass      And actually when my count did hit the gutter after a tetanus booster I didn't have 1 symptom, it was just a feeling that my count was low that sent me for a CBC.

Hang in the th - sounds like you are doing right by your son and that your son is handling this well.   

Honestly, this time we are so much calmer. I remember 5 years ago, when this happened the first time, our entire family was in panic and almost came to a standstill. This time he has very few symptoms, only some petechiae so far. Our hemo also agreed to wait for a little without any treatment and closely watch for symptoms. I thought 5 years ago, we really over-treated him. All these IVIG (12 rounds in 4 months) and prednisone (up to 100mg) caused a huge up and down of his count in a short period of time. I think it actually messes up his body and makes the symptoms even worse.

Good for you. It doesn't rule my life either.  I just take a few seconds each day to look.  No harm in that is there?

I'm certain most of us are checking ourselves for petechiae and purpura daily.

I most certainly am not. ITP is not ruling my life to that extent.  I have better things to do than look for symptoms. 

We visited Children's Hospital today for a follow-up. Unfortunately, same as last time, 60mg prednisone did nothing at all. His count is still at 4k. But he has mild symptoms this time, just some petechiae on his legs and shoulder. So we agreed to go back on Promacta again. Also, our hemo said since he relapsed, he will dig a little deeper to rule out any other cause of ITPs. He drew 9 vials of blood and ran a full autoimmune panel to check for everything. So far, C3, C4, DAT, and LDH results are coming back which are all normal. I am sure there are dozens more results that will come back in the next couple of days. Hopefully, everything is good, and he is still just ITP.

I relapsed after 11 years of normal counts.  Long story short, woke up to see blood spots in my mouth. Went to the ER and found out my platelets were at 2K.  IVIG and dexamethasone infusions for a week brought my counts up to 230K but they dropped back down to 20K only 10 days later.  Went back on steroids for about 7 weeks but told my doc that I wasn't going to take them any longer than that so I tapered off. I then started Promacta at 25mg daily and my counts have steadily risen...quite dramatically. Last count was 390K.  I should note that I am taking 1600mg of papaya leaf extract daily (split into two doses of 800mg), also, and avoiding processed foods and sugar.  Now I'm worried my counts will become too high, which I never thought would happen. I'll talk to my doctor about this and see if it makes sense to reduce the Promacta dose to every other day.   I'd be happy with a stable, medication-free count of 50K. But nothing is for certain with ITP.  I'm certain most of us are checking ourselves for petechiae and purpura daily.  Hoping your son's relapse is only temporary.

Counts are good but it sucks that you can't tolerate the dosage.  Hopefully when your dose gets reduced, that part will get better and still maintain the count.

Update
Last Friday my count was 48.
Current meds; Fostamatinib 150mg twice a day, Prednisolone 4mg daily and Avatrombopag 20mg weekly.
I am not tolerating the increased dose of Fostamatinib as well as the 100mg one, and am having to take Metoclopramide regularly to combat the nausea. 
I see my consultant again in 2 weeks. Spoke to her on the phone earlier this week,  she has increased Avatrombopag  to twice a week and is planning to reduce Fostamatinib back to 100mg when I next  see her.