At this point I doubt I would agree to another hospital stay with a platelet reading of less then 10. Right now I have no symptoms but will find out today where my level is. The worse symptoms I had were petichia, bleeding gums, a mouth blood blisters. I did also have some servere bruising when I was first diagnosed. I was on plavix at the time and all the doctors some with out even seeing me said the bruising was a result of plavix. Luckily one cardio rehab nurse said you need to be seen. When I insisted I be seen they finally ordered a blood test and found my platelets were at 1. That is where the journey began. I consulted with one hemo doctor in the hospital last week and he said in 20 years of practice he only seen 3 patients with platelets less the 10 and one bled to death so that is a bit scary

Symptoms are more important than counts. Each of us is different. Some of us can manage well with a count in single figures. Others cannot. You know your body better than anyone. 

My count has been below 5 multiple times.  I've never been hospitalized for it, nor would I allow it.  I've also never had IVIG as a rescue, but I did receive an IV steroid twice.  I've always responded well to steroids, so that's my "panic" rescue.  

Promacta is a reasonable choice for you to try now.  Give it a fair chance.  You may have to titrate the dose upward multiple times before you get where you need to be.  If by chance it ultimately doesn't work, there are other TPO-R types of drugs that might.  There's also Rituxan, should you choose to try that.  Bottom line is, you have options, and you are the ultimate decider of the options.
  

I have never been 1, but I did get down to 7.  My hema doc left orders with someone (not me) that if I got below a certain number, I was to go in for a treatment of WinRho.   Other than that, I have never been admitted to hospital.

Thank you. My platelets were at 1 for only a few days that I knew of. I received 2 treatments of IVIG and they rebounded to 120.  My concern is this happened in the past and they drop back to 1 pretty rapidly. Last time I spent close to a month in an out of the hospital before they stabilized.  I am also on Promacta which I just started which will hopefully keep them above 10. I am out of the hospital and do not want to go back. I have to see my hemotologist tomorrow for another CBC. If they are below 10 she will probably leave it up to me to go back to the hospital. Right now I have no symptons. The ER doctors freek out with platelets that low. My Hematologist is concerned but not panic stricken that is why she lets me decide. i guess the question is what does other people with  "panic low" platelets due. Do they stay out of the hospital or just go and lie in a hospital bed until they come up. My doc can give me IVIG in her office if that is what she thinks I need. 

joecirillo there really is no answer to your questions - what goes for one person doesn't go for the next person.
What is your hematologist doing for you now?   What treatment?   How long have you been at 1?

Yes, I've had a count of 1 lots of times. When you find a treatment that works you'll get stable.

I have platelets at 1. Did anyone experience this in the past. How long did it last? Did it reoccur

I'm glad to say you're still in good health, despite an ITP diagnosis.  Your present count is enviable, and I'd be happy to have it if it meant I could forgo treatment.   I'm 72 and have been in the ITP boat for many years.  There is nothing about it that can be "expected", either now or down the road.  I haven't seen an identical case to mine in all the time I've been a member in this group, and no two others have been identical to each other, either.  There is no ideal guaranteed treatment for any given situation.  But I will say that you shouldn't even consider treating until your count gets to 30 or below.  That's an adequate count to handle most bleeding situations, for the exception of most surgeries.  Since the mortality rate for ITP is relatively low, and since the harsher treatments are responsible for at least half of those deaths, you shouldn't be in a big hurry to accept treatment if it isn't completely necessary.  

My advice is always that you should learn everything you're able to absorb about the disease and its treatments so that you're able to completely understand and approve of everything your doctor advises.  If you haven't yet, be sure to read all the information under the Patients & Caregivers tab on the home page.  Hope I've been helpful to you, at least a little.  

      

I was diagnosed with itp in 2013 count of 120.  My last count 11/29/22 was 76 my lowest.  What can i expect down the road, i am 72 years old and in good health other than itp.  No medications except for blood pressure pill once a day which is good.

Personally I would get off dex and see what happens. Nowadays, unless the patient is symptomatic, treatment is usually withheld on a count above 30.
If it went below 30 I would go see a different haemo. 

Hello! I had a baby girl on 6/12/22. Went in for a regular check up with my pcp in September and had low platelets and they have been dropping ever since. I had a normal pregnancy other than gestational diabetes. I was sent to a hematologist and started on 40 mg dexamethasone and have been tapering off that since 10/6/22. I tried prednisone but had a bad reaction to it-though after reading here I may have been just having a hard time coming down from the 40 mg of dex. But bc of that I have been tapering with dex and having a hard time sleeping, gaining a lot of weight and just been exhausted. My numbers have been dropping since the taper and we’re 53 today 11/28/22 and my hematologist wants me to start rituxan infusion on Wednesday. I am 30 years old- would you seek a 2nd opinion before starting the infusion? Or even after I start it? There is no one else local but I could drive 2-3 hours to either Atlanta or Nashville but I’m wondering if they would just tell me the same thing.  Below is my platelet count on different dates and the mg of dex I was on. Would love any feedback!


80 something 9/7.   55 9/12.    58 9/16.   59 9/19.    57 9/21.    45 9/26.  47 9/28.   20 10/6/22  -40 mg dex.   230 10/11- 8 mg dex.   179 10/18/22 4 mg dex.  124 10/24/22 4 mg dex.   166 10/31 2mg dex.  113 11/8 1mg dex.       75 11/15 1mg dex.    75 11/18 1mg dex.     81 11/22 1 mg dex.     53 11/28 .5 mg dex 

Yeah the prednisone is not fun. Hopefully they hold at a good level. Fingers crossed for you. So weird that after 13 years something triggers it right? 

Thanks, Chad.
It seemed the Prednisone wasn't doing much for me this time around, but now I've been thrown a curveball. Here's how it's gone so far:
80mg /day week 1 (that sucked) - counts at 80
60mg/day week 2 (that sucked, too) - counts at 57
40mg/day week 3 - counts went up: 122 "the curveball"
I'm on 20mg/day now. Getting my next counts on Tues. So far no symptoms 
If for some reason they crash down again lower than 30, sounds like my hematologist is interested in trying Promacta. But it sure would be nice to see the counts continue to rise back to my normal level. Normal for me for the past few years has been in the 160-170 range.

Hey Mcafiero. My name is Chad. I too was in remission for 13 years. I’m 2007 I had ITP at the age of 18 and was put on prednisone for a month or so. Everything went back to normal and everything was fine until 2020 when I noticed the same petechiae on my feet and bruises. This time it was harder to get it under control. Steroids didn’t work and then I did the IVIG for a temporary fix. My doctor had me go in for two rounds of Rituxan and so far that has been holding it seems. It’s been a little over two years since then and my counts have been in the high 200-300k range. Please let me know if you have any questions or just want to talk. 

As mrsb said, if you are worried get your eye/s checked out.   When you say 2nd one in a week - do you mean it happened in the other eye or same eye?   

I started getting that back in 1989 after diagnosis - it happens every now and then so I don't get bothered by it.   Sometimes I don't know it until someone says "what happened to your eye?"      Once I had one and happened to have an eye exam scheduled, the doctor wasn't impressed and said it will go away.  He said that can happen for various reasons.  

However, as my signature says:   "Instead of wasting your time worrying about symptoms, just get it checked out" - Nieca Goldberg, MD

You are smart not to rush pred as you have been on it a while - and as I said, that stuff is nasty!!   I know in my heart prednisone caused problems with my knees & shoulders and made my skin thin.   

If you are worried best get it checked out 

My count is 34. Doesn't go above that, ever, just always lower

Is your count low?

HI Melanie
Hopefully I will be able to taper off Pred but I'm not going to rush it. 

Oh shoot mrsb - I'm so sorry, had big hopes for you and this trial!   But it sounds like you are looking forward and have other options to consider.   If you went on Fostamatinib would you have to take the 5mg pred along with it?  It would be nice to not have to take prednisone at all, that stuff is nasty and can cause so many problems.  You will get to 30k and feel normal again!!!  

Hi everyone
Is it normal with ITP to have a Subconjunctival Hemorrhage?
This is my second one in a week

I'm so sorry to read this, mrsb.   Hopefully you'll find something that works for you soon.

I have terminated my participation in the PRN 1008 (Rilzabrutinib) trial. 
It is a very well organised trial  and I've been closely  monitored but with  a count of 14 last week and 13 yesterday I have failed  to meet the criteria to be offered an extension trial so there is no point me staying on it any longer.
Plus I can now stop taking the anti sickness meds. 

I am allowed to take nothing but Prednisolone for the next 4 weeks and will be monitored weekly. After the 4 week period I can take add in something else. 
I have 4 options open to me
-: Fostamatinib which kept my count above 30  (with 5mg Pred added in) for most of the trial I was on all those years ago. I had no side       effects. However I have now discovered it may affect bone remodelling and is classed as  risk factor for osteoporotic patients. Not that I can   find any research being conducted regarding this. I'm going to contact the Consultant I see at the metabolic bone clinic and ask his advice. 
-: Avatrombopag has finally ( about 4 days ago)  been licensed  over here but it will be about 12 weeks before it is available
-: Myofortic which is closely related to MMF which I've taken before but didn't like. Made me very low in mood. 
-: Rituximab 

Oh for a count above 30 and I'll feel normal again. 

Hi! 
I hope everyone is going to have an awesome thanksgiving!

I had a question. How do you talk about itp in the initial phases of a relationship? I explained it to my ex-girlfriend after 6 months of being with each other and she was totally ok with it. I suspect one reason that she had gotten used to me so this small issue was negligible for her. She was the first gf that I opened this up for. During that time I was hinting to her that I should take some precautions with respect to the foods and drugs I use.

Now I'm dating someone (ugh, from a long distance) and it is pretty much a recent thing (less than a month). She found out that I had a medical exemption from conscription (which was mandatory back in our country) and asked me about it. I postponed it to sometimes we can talk, rather than chatting.

My fear is that since we have just gotten to know each other and it is the very first stage of the friendship, she might refuse me. I honestly don't care much since I would just move on to someone better . This is something out of my control.

Anyway, how should I explain that to her? And to what extent shall I explain that to her? She has studied premed (and will enter medical college next year) and her parents are doctors and her sister is also a pharmacist, so they will know what I am talking about.  Also, I wanted to know to what level does it make sense for her to ask questions about my medical history? I don't feel comfortable explaining the very little details.

Thanks!

Hello - I've found so much helpful info and individual experiences from members in this forum so I'm sharing my latest tx try in case helpful to others...
Started Tavalisse 6 days ago - was on Promacta (eltrombopaq) for 3 yrs but dip in count to 16 prompted Heme to suggest alternative. 
No gastro, blood pressure (bp) or other side effects so far - not thrilled about possible bp rise / possibility of taking bp med.  I've seen the stats/ trial data so no huge hopes but you never know! 

FYI - My past treatment experiences:
-WinRho and then Nplate (romiplostin) push injections 1 x wk for 4 wks in prep for hernia surgery in 2016 - at 4th NPlate injection my count made it >65 for a short period - surgery completed with no issues
-Dexamethasone pulse - tried this with no results 
-Promacta - 3 yrs @ 75mg - no side effects - hit 50s a few times but counts mostly fluctuated 20s-30s   (Honestly not sure how much promacta was doing - but with no side affects and counts mostly above 25 - gave some peace of mind not to think about it or get blood drawn as often)

When I found out I had ITP three months ago, I also realized that I had diabetes, so I started a low carb, mostly plant based diet. I have lost weight, and brought my A1C levels down to normal and I am feeling better, but my platelet count has still been up and down. So the plant based diet was clearly not a cure for ITP. Currently at 70. I am really interested in learning more about the gut microbiome and its connections to ITP and auto immunity.

That did happen during the 2 weeks I was taking after knee replacement - then when stopped went back down.
But I won't be stopping the baby aspirin now - will be interesting to see how long this lasts.

Thank you both for the kind thought