Newly Diagnosed, Seeking Advice!

Hello everyone.

I was recently diagnosed with ITP around 10 months ago. I started showing symptoms (excessive bruising, petechiae) around 3 years ago with a platelet level of 90,000 but my doctor passed it off as if it was nothing, denied my moms questions, and never revisited the matter. (She is no longer my doctor). I visited the doctor around June of 2019 due to a virus that I had, and discovered my platelet levels were at 63,000. Once I recovered from the virus, I had a lot of testing done and discovered my platelet counts were at 46,000. I started seeing a hematologist around August 2019. She gave us the diagnosis of ITP. I needed some dental work done, and my levels were at 26,000, so I did one treatment of IVIG in October, and had a very positive reaction, with my levels boosted to 200k. Unfortunately, when I went back in January, my levels had dropped down to 50,000.

As of last week, my levels were at 28,000. . My levels have never been this low without treatment, and I am scared to see what my levels will be like at my next CBC checkup (in July). My doctor is not recommending treatment for me at this time.

At first it didn't seem like much to me, I didn't have many limitations, I just wasn't allowed to jump on trampolines or go rollerskating or go horseback riding. Now, the reality of this diagnosis is very daunting to me, and I am terrified. I don't know anyone with ITP, so I came here to seek advice. I worry about not doing treatment. Is the watch and wait strategy a viable approach? Has anyone has experience with natural remedies working to increase platelet counts? Just looking for some reassurance and advice for the future...

I guess I didn't take my ITP diagnosis as serious as I should have. I did my normal things. I was told not to hit my head or any major organs. A few days after I was told I had ITP, I fell on some stairs and had the prettiest black bruise I ever had. Even that didn't freak me out. My family was more worried for me than I was at my lowest(7).
One thing to know is that everyone is different. The only symptoms I had were the bruises.
I'm sure others will chime in with some advice.

Hi Teen with ITP,
I'm a not very experienced ITP person who loooooves (!!) skating. I'll tell you what I do. Perhaps it gives you some perspective you can form your own opinion with.
1. With a platelet level below 30000 I get regular blood tests (and am medicated, because mine will keep decreasing without). By regular I mean once a week or every two. I also don't do any risky sports, because if I have an accident I might have a serious problem.
2. I'm on Revolade (Promacta/ Eltrombopag) now after trying a few other meds. If I stay over 100000, the side effects are a bit less severe (bone pain etc), and once I lose a bit weight that I had gained due to stress and cortisone treatments- then I will go horseback riding and skating again. It's not ideal, but over 100000 you can still have surgery and are not that likely to bleed too much when you have an accident.
3. Natural remedies- I tried Papaya Leaf, Aloe and some others. If it helped, it didn't help enough, I need my medication.
I hope you will have less limitations again with time, too!

I'm like Cindy - but I wasn't told not to do anything - shortly after diagnosis we moved overseas, taking 60mg of prednisone a day, to Japan then Hong Kong. I was diagnosed with 11k and dropping in 1989 and looked like I had been beaten in a back alley with a 2x4 - I was fortunate in that my only symptoms were the very bad bruising and little red dots.

I'm not sure my hematologist would let me be at a count of 28k - but it would be something we discussed and decided what to do together. You need to be comfortable and confident with your hematologist!

The only sure thing about ITP is there is no sure thing about ITP

Being in Texas there are good teaching hospitals/hospitals aren't there - if you are close to one can you get a 2nd opinion? MD Anderson comes to my mind.

I'm sorry you are going through this - but there is life after that ITP diagnosis. Learn all you can, that gives you power.

Thank you for your insight! I really appreciate it.

I am blessed to still be able to do what I love, I just can't ride my bike or skate with the neighborhood kids anymore. My doctor isn't recommending treatment for me at this time because I am not as active as I would usually be, with the virus and everything, but it is something she said we would have to discuss in the future. It seems like the treatment options are very scary, and don't always work. I know everyone is different, but what were long term treatment options like for you?

Hi Teen- I'm not so longterm. It seems I have had low thrombocytes for three years, I only got meds since last year. I had to take Dexamethasone and Prednisone a couple times, before my insurance would pay Revolade. The cortisone treatments weren't so pleasant, Revolade is alright for me. I have some bone pain, cough, etc. NPlate was unbearable for me (chest pain and trouble breathing), but some others are okay on it. What I can say for sure is I'm a lot less scared than a few months ago, because I learned there are a lot of different treatment options.

Hi Teen - When diagnosed the only options I had were a splenectomy and/or prednisone, since no one could assure me a splenectomy was a cure I refused to have it removed and went for prednisone. I was on it for a long time because after we got to Hong Kong the hematologist there would panic and want to remove my spleen with any drop in count and I wasn't going to do it, after getting home I did a very slow taper and kept a count between 80 & 120K if I'm remember right. Then in, on shoot was it 2002?, I had to have a tetanus booster and that sent my count way down - no symptoms just a feeling I had. Refused prednisone and had one IV of WinRho and have had decent counts since [not in the range but not real low]. So I'm an odd one in not needing long term treatment, thankfully!

Well it sounds like your hematologist is a good one - with this nasty virus going around it's good she wants to keep you at a distance, knows you won't hesitate to contact her if something is amiss or you just don't feel right.

Yes the treatment options are scary - I'm glad I don't have to make a decision on that, for now (I never say never). There are some that aren't as scary as others - I know there are some I'd refuse unless a last resort.

Keep positive - read all you can (have you clicked on the white tab "Patients + Caregivers" under the PDSA logo on the top left of this page, think there are 3 sections under it) - you sound very intelligent and mature! I'm hoping your count will eventually increase and stabilize!

I don't treat unless I'm under a count of 10. Above that I bruise but don't have any other bleeding so I know I'm okay to
wait. Many doctors tend to over treat so yours seems to know what they're doing. Good luck.

Thank you everyone for sharing your experiences with me.

After reading more posts by people with ITP and researching more, I'm feeling a little less worried. My very first documented CBC was in 5th grade, when my levels were at 90,000. We never had a follow up, and the next time I got my blood drawn was this past summer, with even lower platelet levels. Since we don't have document of this 3 year gap in time, my platelets could've raised themselves and gone back down, or gone super low and come back up slightly, or slowly decreased. Who knows? For all we know, the next time I get my blood drawn, my levels could be super high, but judging by the pattern of previous draws, they will most likely decrease, but I'm going to talk to my parents about purchasing some papaya leaf extract to see if it has any effect for me. There's no harm in trying!

Teen research papaya and side effects - reputable sites. Just because it is "natural" doesn't mean it is safe for all.

I like medlineplus.gov to look up meds and supplements.
medlineplus.gov/druginfo/natural/488.html

Thank you for the website, I will be using that for reference from now on. I guess I got excited about the positive effects that the papaya had for some people and didn’t look too far into the cons. It is likely I will start treatment after quarantine is over, and my doctor has mentioned a bone marrow biopsy before I start treatment so I’m not sure if the papaya leaf extract would interfere with the surgery/procedure. Maybe I’ll consider cutting down the sugar in my diet. Is caffeine proven to have an effect on platelet levels?

Teen
Mel is right..do your research, make sure there are reputable references to follow.
Google scholar and the Cochrane library are useful too for systematic reviews. Make sure anything you read is as up to date as possible.

I do like the MedlinePlus site Teen - have learned a lot there.
I had a bone marrow biopsy - back in '89 was put in the hospital with my count at 11k and dropping, a biopsy done there [would rather have a root canal ] never did find out the results. Some will say you don't need one, some will say you do. Do what you feel is best for you.

If caffeine has an effect on platelets, up or down, my body doesn't know it - I drink coffee daily and haven't even thought about caffeine, I just like coffee and don't intend to give it up. And sugar - I am a sweets addict. Just made THE best chocolate chip cookies Thursday, brown sugar and granulated sugar. [want the recipe? - heck I think I'll post it in the social section]

What I said above, do what you feel is best for you - that really goes for everything concerning ITP.

Give me a bone marrow biopsy any day rather than a root canal, never ever again. Without a shadow of doubt the most horrific experience of my life.

Anne you need my dentist - I fell asleep during a root canal he was doing, he had to prop my mouth open

I love sweets as well, but I am very prone to cavities, I brush my teeth thoroughly after every meal and I still manage to get cavities, and the last time I had a cavity I had to get IVIG. Horrible experience. I had a high fever, horrible migraine, I couldn’t eat without throwing up, couldn’t move, and they thought I had meningitis, when I just had horrible side effects. I would rather not have to do that again. I’ve been trying to decrease the amount of sugar I eat but I’m extremely bored during quarantine so I end up baking lots of goodies. We eat mostly gluten free and Ive made a gluten free cinnamon roll cake several times.

I have been told that over 75K you are as good as over 150K for any sport. In other words, failing from a horse will not be much worst to anyone at 75K than at 150K. Few more bruises maybe but not live threatening.

My understanding is that we are not always sure of the count of a particular day if we don't have a blood test. My suggestion is to get a test the same morning that the horse riding will take place to be on the safe side.