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 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.

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 

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.

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

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.

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.

Have you tried reducing Azathioprine at all?

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.

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.

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.

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

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.

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.

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

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

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.

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.

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!!  

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 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.

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.

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

My hematologist treated me with a round of the corticosteroid Dexamethasone in October but my platelet increase was only temporary. It has gone up and down since that time. Co-incidental with the decline starting in January of this year was that my cardiologist switched me from Simvastatin to Rosuvastatin to lower my LDL cholesterol to the 60s. Now I'm wondering if the new statin has adversely affected my platelet count, as there are reports of that occurring. In any case, as my count had dropped from 55,000 to 41,000 and I'm scheduled to have cataract surgery next month, my hematologist recommended a two-day IVIG infusion to try to raise my count. I underwent that treatment this past Thursday and Friday, April 18-19, and will learn the results this coming Friday, April 26. I'll be consulting with my cardiologist tomorrow, April 22. I'm wondering if anyone else in my age group, I'm now 79, has experienced the extremely lower platelet counts that I have after taking these cholesterol lowering medications.

I’m on Avatrombopag 20mg daily and have been experiencing pain in my joints and extreme tingling pains in my hands.  The pain in my hands will cause me to awaken at night. I briefly discontinued the Avatrombopag and my count dropped to 5 so I’m back on it again.  Currently my count is back up to 96 but I’m enduring the pain.

Sorry to hear you have such a severe side effect. I don't know this medication at all but I have found personally that varying the time of day when I take the medication can minimise how much I feel the side effect. eg one caused severe thirst - overnight that is very difficult, but during the day easier to manage. Pain is different, but even so your daily activities might reduce the pain, or at least distract you, whereas at night you can't escape it (?). Good luck, hope you resolve it

I don't know anything about this medication, but I think I would go to my doctor and ask if I could do a lower dose.  That's what I did when I first started Prednisone.

Hi Jeff.  I just clicked on the image icon and a whole bunch of words came that in a strange language!  I'm kind of thinking it may have to do with directions on how to post a picture.  Is there any way it can be translated into English?
Thanks in advance!

I'm with Cindy, I'd be talking with my hematologist about the side effects you are experiencing!