Hi,

my 18 month old son was recently diagnosed with ITP. His platelet count has increased over the last 5 weeks from a count of 3 to a count of 16. We were told initially to keep him out of his usual childcare setting, which is a baby room at a loca nursery for 0-2 year olds. As you can imagine, this can be quite a physical environment with plenty of opportunities for accidents!! 

After his most recent blood test which showed the blood count was still extremely low at 16 we have been advised we should send him back to nursery. We don’t feel comfortable with this as we have read that there is still a severe risk below 20. 

Are we being over the top, or is the healthcare professional being a bit too simplistic - their written advice talks about return to school, but suggests no contact sports until the count is over 50. To me, nursery is basically a contact sport!! 

Any advice would be great!

Thanks

Hello,
My Background: 41 year old male

ITP 2008 - remission - Danazol and Rituxan worked.

2024 - Current - ITP came back - Danazol and Rituxan working well and praying for the same result - remission.

In regards to PRP for subjects in remission having had ITP or whom have low platelet numbers I would have to advise against it. Everyone is different but this is my story and I don’t want what happened to me to happen to anyone else.

In 2021 I had PRP to my right hip due to OA and hip pain. It worked great and my right hip feels great present day. So I used to be a proponent of PRP until recently.

2023-2024 I had right shoulder pain that would not heal. Tons of PT and still was not healing. I like the natural route of healing so I tried PRP and got (3) injections to my right shoulder. The injections are given once per week for (3) weeks. For those whom never heard of PRP essentially they draw blood from your arm and spin it in a centrifuge. The healing properties (platelets) are then injected into the problem area. After the last injection, approximately 7 days later, my ITP came back. Now with ITP it is very hard to pinpoint exactly that it was PRP that caused the return of my ITP but coincidentally it’s very hard for me to say that PRP isn’t the primary cause. I wish I had done a platelet count before I got the PRP injections but I did not. But I believe the PRP caused my body to go into overdrive and destroy my platelets. Two weeks ago I was down to 3 platelets. Fortunately now I am in normal range.

So this is my story. I was a proponent of PRP and now I am not. For those whom had ITP as a child, ITP as adult and are in remission, or have low platelets I would do your homework. God bless.

I have not had a bone marrow biopsy, but my hematologist seems to think it is coming from my bone marrow. We are not allowed to give the injections at home, we have asked about that.

Basically N Plate (Romiplostim) tells your bone marrow to manufacture extra platelets because either it wasn't producing enough before injections started or your spleen is destroying your platelets. Yor haematologist should be able to tell you which it is. Have you had a bone marrow biopsy?
Over here in the UK injections are done by the patient at home which reduces the amounts of tests if counts are stable.

I'm with mrsb - a count of 86k is very good, as long as no symptoms! Unfortunately you may never know what is causing the low platelets - we believe (that includes the hematologist) we know what caused mine, a gamma globulin injection which was required by my husband's company before we could go to Tokyo to find an apartment for a move there. It was shortly after that injection & while in Tokyo looking for the apartment that the petechia showed up on my torso. When we got home to pack a week later I looked like I was beat up in a back alley with a 2x4 & had a count of 11k and dropping - I can laugh at that now, 35 years later. We moved to Tokyo a couple months later while I was on a high dose of prednisone, had THE best hematologist there who actually knew my hematologist here in the US - and later moved to Hong Kong before moving back home.

However I do understand your anxiety - all is right with the world and then bam, something we never heard of muchless dreamed of entered our life (ITP). I am glad your doctor is sending you to a hematologist, I still see a hematologist all these years later & my count is now fairly stable & decent.

Please keep us posted on how the visit goes with the hematologist and how you are doing!!  

mrsb04,
 Thank you for your response. Yes, I do go every week to have my number checked and I get my NPlate injection then as well. The dose for the NPlate is still on the higher side, and it seems to be working. When I first came down with ITP I was in the hospital for 2 weeks with a count of 5000, and was told I was very hard to regulate since nothing seemed to work and was told by my hematologist to wear a mask around my granddaughter since she was in preschool. At this point I guess I am still spooked about taking it off around her, though my husband and I really want to. We do however wear our masks everywhere we go. My new hematologist, when we asked her if my body was actually making more platelets then it was destroying, said it is probably just the injection, which confused us.

Brookiesnana
I have never worn a mask around my grandchildren even with counts as low as 4. I routinely wear them when I go for blood tests and medical appointments but other than that I assess the situation as to whether I wear one or not.
Are you still having weekly blood tests? It seems a bit excessive with a count that good.

My husband and I feel the same way about masks in stores and about Covid. We are just trying to get the courage up to try to start living life. I am glad you have reached out

The whole point of treating ITP is not to normalise platelet count but to aim for a safe count by using the lowest dose of medication to keep a count around 50 to 80

Oh, trust me, I get it!  My husband and I still wear our masks if we go into stores.  My brother (who was a fanatic about staying away from people during the pandemic) and sister have both stopped wearing their masks in stores.  We see more people without them than without.  Hubby and I both have health issues which is why we still wear them.  I don't know if we'll ever stop.  The pandemic may be over, but Covid is here for a while.
I'm glad I gave you some peace of mind.

I think my biggest anxiety at the moment is wondering what is causing this. Is it ITP or something else. And the wonder of what tests hematology will do when I start seeing them. I do not handle the unknown well with my anxiety. Thank you for responding though. Knowing others live with low platelets (much lower than mine are or have been) helps ease some of my fears.

CindyL, thank you so much for your reply. It makes me feel better hearing that there is a possibility of living a normal life. I am slowly going to start taking my mask off around my family. unfortunately I have been masked since the pandemic began, and I am afraid that I will catch everything going around. T hank you again, you are my first response

We only reduce the dose once from 75 mg to 50 mg.  After that, we never change it.

We also thought that azathioprine was the key to getting my platelets to stabilise in the normal range.

Brookiesnana, speaking strictly for myself, even when my counts were low I didn't avoid my family.  With your numbers as good as they are, I would just live my life normally.  Back when I was first diagnosed, I had a young niece who liked to crawl over me.  My sister would get upset but I told her that if I got a bruise from my niece at least I'd know where it came from.  One Easter a few years ago, we went to my SIL's for dinner.  I didn't know that my other SIL was sick, but I didn't pick anything up. Each one of us is different and may not have the same reactions as someone else.  I had my spleen out in 2006 and still live normally.
Columbia, like I told Brookiesnana, we are all different.  I eat anything I want, including honey, and it doesn't affect my counts.

A count of 86 is completely acceptable. Unless you have any symptoms it is highly unlikely that any haematologist will commence treatment unless your count is under 30. Even then if you have no symptoms a watch and wait approach will probably be adopted. `
At this moment in time there is nothing to worry about.

Have you tried reducing Azathioprine at all?

Not sure if it applies to others but food might be a source triggering the ITP. In my case, it's the propolis causing me trouble. It looks after my search that other bee related food such as honey more or less results in the drop of platelet count.

TLDR: Possibly have ITP & my anxiety is out of control while waiting to see hematology. How do you cope?

Hello. I am new here but have read articles & discussion forum extensively. I am glad to have found this site as it has been the most informative. So firstly, thank you!

Background: I am a 42 year old female with generally good health. My only prior issues have been borderline high cholesterol, anxiety & IBS. At the end of February, I went to the ED with severe stomach pain, concerned of appendicitis. Literally every single test, including CT with contrast, came back normal. Except for my platelet count. It was at 76. First time it has ever been abnormal. My PCP scheduled a follow up CBC on March 4 & they were at 51. Subsequent follow up on March 8 with platelets of 120. March 15 they were 123 so she said she thought they were coming back up & we would test again in 2 weeks. The test on March 27, they were back down to 86. I now have an appointment with hematology & was told to watch for signs of bleeding. So far, I have had no symptoms other than some fatigue. PCP thinks it is ITP since all my other bloodwork is "perfect" but wants hematology to confirm. 

I am diagnosed with anxiety & on medication for it but this new potential diagnosis has my anxiety off the charts. I am constantly checking myself for symptoms. I had very minor gum bleeding today & almost went to the ED because of it. I had to calm myself down that it is minor & I can wait until I see the specialist. Especially since I have out of town plans with family all weekend for the holiday. 

For those of you with anxiety, how do you manage living with a platelet disorder (likely ITP) without driving yourself insame with worry? 

Sorry for the long post, i just need people with experience to talk to i guess.

Thank you for the excellent info. I was diagnosed with ITP 2 years ago and underwent several treatments, which really were ineffective. My hematologist started me on NPlate, but also started me on Rituxin with the hope of getting me off the NPlate. The Rituxin didn't work for me as well as the DR was hoping. I am currently receiving an NPlate injection every week and my count is holding between 130-170. My numbers fluctuate every week. My husband and I wear a mask wherever we go, and while wearing a mask in a grocery store is one thing, we also wear a mask around our family, specifically our daughter and 5 year old granddaughter, who is in preschool and you never know when she will get sick, which breaks our hearts. We have not kissed them in 2 years, we don't eat with them, or do anything family oriented for fear of us catching something and my count dropping. We can't seem to figure out how to live as normal a life as possible. Does anyone have any advice?
Thank you all so much

We have tried several times to reduce the cyclosporine A to 25-75 mg daily, but the platelet collapsed after a week.

That's why we stopped at the current level and didn't move forward.

Goodness dr bean  what a cocktail of drugs you are still on. Surely it would be good to try slight taper. Protocols state the lowest dose of meds to maintain a count ≥ 50 

My haematologist has no plans to slowly taper me off a drug, even though my count is stable.

In fact, we have experienced too many platelet disorder events to go one step further at this stage.

Therefore, my current treatment has not changed since January 2022, which is more than two years ago.

It's a pleasure to share my experience with other ITP patients, also medical students.

Hey drbean it is good to see you - and that great platelet count!!
Think your hematologist may start tapering you off a med slowly since your count is stable?
Thank you for keeping in touch and letting us know how you are doing!

My platelet count from Feb 23 to Mar 24 are as follows;
4 Mar 23 - 178
22 Apr 23 - 166
5 Jun 23 - 190
22 Jul 23 - 152
28 Oct 23 - 172
18 Dec 23 - 193
5 Feb 24 - 166
23 Mar 24 - 174

The combination of current treatment:
a. Cyclosporine A - 100 mg daily (am: 50 mg, pm: 50 mg)
b. Azathioprine - 50 mg
c. Folic acid - 5 mg daily
d. Famotidine - 20 mg daily
e. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

Curry
I have been on Romiplostim (NPlate) in the past. No problems with hair loss just awful bone pain particularly in my hips

No worries!  Thanks again for taking care of the site!

That sucks!  You really do have a lot on your plate!!
I really hope your doctors can figure something out for you.
Keep us posted.

No way to get rid of the cysts. Draining some is an option but they just come back or others rupture. Way to many to deal with anyway. Bleeding is a common occurence but usual is short lived and self healing but apparently not with ITP' Just back from Dialysis and still bleeding significantly

Thanks, Jeff!  I agree with Mel, you do do a good job!  And thanks for listening.
Just a thought, is there some way you could give us a heads up about making changes?  That way we won't totally be surprised by them.

Welcome, Tow.  Sorry you're going through all this.
Since we're not doctors, I think you should discuss the dosage of the Promacta with your hema.  I don't have experience with this medication.
The way I'm reading your post, and I may be misreading it, it sounds to me that the blood you're peeing out is coming from the burst cysts.   Is there anything that can be done to break them up or get rid of them?  Like I said, I'm not a doctor, so if these are stupid questions or I'm not reading your post right, please excuse me.
I really do hope you get the bleeding stopped, or at least under control.
Please keep us posted on how you're doing.

I am new to this site and am hoping some of you can help.  I was diagnosed with ITP about a year ago after a bone marrow biopsy and tons of blood work. I had to have surgery to put in a graft for dialysis and was given platelets and DDAVP through an IV to get me through the surgery.  A few days later I crash and had to have a Catherter put in my chest and was sent to dialysis.  An hour into dialysis I started to bleed at the catheter.  I struggled with bleeding issues, getting platelets, and extra stitches and then finally N-Plate shots.  N-Plate worked for a while and then stopped. 
Since then I have been on Decadron, IV-IG. Promacta, Ruxience, and most recently Doptelet.  Decadron and IV-IG has been the constant with all of the treatments and son far none of these has consistently worked.  I was given 75mg of Promacta and took one pill at night and the next day I had profuse diarrhea from early morning every half hour all day.  The next day I had bad vomiting in the AM.  Needless to say I stopped the pill. SHould I be willing to retry Promacta at 25mg ??????
Besides being on Dialysis I have Polysystic Kidney Disease (hundreds of cysts on bothe kidneys that has taken over the healthy tissue). Lately I have been peeing bright red blood. After hospitalization is has been decided that the cysts have burst and with plates in the low 20's the bleeding of them doesn't stopped. Initial a dose of platelets stopped the bleeding temporarily but most recently that is not working.  I had platelets yesterday morning and still peeing blood profusely this morning.  Yesterday I was proscribed 1mg pills of DDAVP pills and I took one this AM.  The verdict is still out on that and the Doptelet.  I just strted on the max dose of Doptelet (20mg twice a day) about a week ago.  Still doing the Decadron and IV-IG once per week.  If the Doptelet doesn't work my Hematologist said we should try Win-Rho.
Any help would be appreciated.  I can't keep peeing bright red blood.  Urologist and Nephrolgist have no solutions. Says it's up to the Hematologist to get the platelets up.
Thanks for ANY Input

Hi curry - I have no experience with Nplate but did some searching and all I saw was that hair loss wasn't a side effect of Nplate.
I hope someone who is/has used it will see your post and respond.

As usual Jeff you are very helpful !! (it's hard to teach an old dog new tricks )
The changes you made are good ones. Thanks for listening to us and we do appreciate all the work you do on this forum!!

I changed the "Quick Reply" from a pop-up box to always being displayed at the bottom of the thread. Let me know if you like that better.

Thanks, Jeff

I have been taking Nplate, and started losing my hair? is this normal?

I get that things have to be upgraded, but I would hope that it would be easier to navigate.
I don't like the fact that I have to log out and then log back in to get on.I had to that yesterday and today, yet I have the "remember me" box checked.  Oh well, maybe in a couple of days I won't have to go that route. 
I do like some changes.  Like at the top of this post are all the options like, like color, font size, emojis.

Behind you 100% Cindy - this new look is not friendly!
I am doing a "Quick Reply" and in doing so the box covers a lot of your post that I am replying to, that is no help. Also having the last post 1st means you have if you are doing a Reply instead of Quick Reply the original post is at the bottom, at least that is my experience. Don't like this at all!!!

Yes it appears some, maybe all recent posts were lost with this new look - mine was. 
I don't think the new look is user friendly - as all!

This is not easy to navigate as you said mrsb - and it wiped out my response too.
I don't like the last post first - need to be able to see what the original post is in order to reply, and also all other replies so not repeating.
Jeff - why??
 

I'm not sure about this new look!  I found it hard to log in and it's a bit harder navigating the site.  Maybe over time we'll get used to it.  As I'm typing this, I find the font quite small, but if I change to to the 150, it's too big.  There must be a happy medium.
I changed the font to see what it would look like at the 150 size.  This is it.

The message I wrote yesterday seems to have been deleted. The website also seems to have a new facelift. Were recent messages lost?

I'm not sure about this new look. Finding it much harder to navigate, everything is so tiny and it's wiped out my last post. 
Fay if I remember it said I am sorry but as a nurse of 46 years standing I never came across it. 

This is interesting - a new look and mrsb's and my reply is not here.  
Fay I had not heard about MTC until your post [mrsb either if I remember right].   Sorry I cannot be of help to you. Hope you can find some answers.  

Looking for anyone with experience with MTC, or giant platelets.  I haven't been able to find anything on this site.
Thank you in advance for your information.

Good afternoon.  Thank you for reaching out.  I'm sorry to hear about your son.  Unfortunately, no.  We were at Georgetown for the majority of his care, but there were some changes and it no longer became the ideal place for us to go.  Long story short, we now receive our care from Dr. Lambert at CHOP.  She is amazing!  She has a dedicated team to support platelet disorders, is an expert in the field of ITP, is on the board of medical advisors for PDSA, and has a unique understanding of the primary and secondary effects of ITP on children.  The arrangement works for us given our son's relative stability with his medication (Promacta for ~7 years).  We do have some bumps in road every now and then, but generally we maintain a fairly consistent, safe, platelet count.

It's a lot to wrap your arms around in the beginning.  If you have any other questions, please do not hesitate to reach out.      
  

Hello. My son was diagnosed last year and we are also in northern VA area. Have you found a hematologist that specializes yet? We currently go to INOVA, but looking for others to get a second opinion. 

I'm not kid, but I do tend to itch when my platelets are low. Of course I have allergies, too. But as I have been very itch for a couple of days and my count in January was 37K, I am going to get checked today. 

I just went to Cleveland clinic in January for a case review and saw Dr. Lichtin. He is an expert in ITP and has been doing research on it since the 90s. He was wonderful to work with.