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TOPIC: Questions for Those Experienced with ITP

Questions for Those Experienced with ITP 4 years 2 months ago #47107

  • DelnStyle
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Good morning everyone:

So here's a brief summary of my situation. (Please let me know if anyone actually has something similar).

I have CVID and with it, I occassionally will get either (1) ITP or (2) Hemolytic Anemia (destruction of hemoglobin). I've only had the hemoglobin destruction once.

I haven't had ITP for about 4-5 years. In the interim, I have been on Sub-Q IgG (Hizentra) for the past 8 months or so.

Anyways, it seems that I had a viral infection or something, which started in the stomach (felt nauseated for a couple days). The viral illness went its course.

However, I have been having these 'blood blisters' on my lips and inside my mouth. I suspect my platelets have dropped. (Not sure if they have stabilized or if they are continuing to get worse).

So here's my questions for those who have my situation or are experienced in ITP.

1. When does ITP become 'dangerous' to warrant intervention, such as prednisone? Are these mouth blood blisters enough? Or are there more 'dangerous' signs that would show? If so, what do I need to look out for?
- To clarify this question, I don't believe my Dr. is big on 'treating numbers' but more concerned with treating me as a patient in terms of how I feel, danger to health, etc... I've always hovered around the 90,000 mark. So my numbers could be 30,000 now or less? I have no idea. I'm just trying to gauge or have an indication on when it becomes 'more dangerous' and the signs I need to watch for that it's becoming more dangerous and warrants medical intervention.

2. Does Sub-Q IgG infusions help or fend off ITP? Does it work alone, without need for prednisone?

3. Does having 'low platelets' 'okay' so long as you don't get injured or get hit with something that can cause internal bleeding? Meaning, if I'm just in my house, or sleeping, would my blood vessels or organs or something just start bleeding on their own (kind of like the gums of my mouth do?) and thus, make it a medical emergency?

Thank you for your help everyone, I am a bit nervous.

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Questions for Those Experienced with ITP 4 years 2 months ago #47117

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I also have CVID but not quite bad enough to treat at the moment. The Sub-Q IgG you are getting will not be a high enough dose to do much for the ITP so you would probably need something else if you are going to treat the low platelets.

Blood blisters in the mouth are called wet purpura and is usually a sign of a very low platelet count, usually under 10, which really does call for treatment. You should maybe see a haematologist to treat the ITP. That's what I do, I see both a haematologist and an immunologist at the same hospital and it works very well.

Low platelets can be okay for some people but not for others and it's really difficult to know which sort each of us is. Spontantious internal bleeding is rare but it does happen and even my ultra conservative haematologist who doesn't worry about much would want me to treat if I had blood blisters and a low count. I used Nplate when my count was in single digits but now it keeps at about 80 on its own.. so far.

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Questions for Those Experienced with ITP 4 years 2 months ago #47118

  • Sandi
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I agree with Ann. Blood blisters are a sign that treatment should be considered. It's true that you do not have to treat the numbers, but that symptom warrants a call to your Hemo. Many people can do just fine with low numbers unless symptoms like that appear.

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Questions for Those Experienced with ITP 4 years 2 months ago #47123

  • DelnStyle
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Thank you for your responses.

I have read that ITP usually resolves itself within 2-6 weeks. I'm guessing the body eventually works this out itself, the only issue is that if things get 'too low' you run increased risk of internal bleeding should you be impacted by force, etc...

Thus, I imagine that the 'treatment' of prednisone and other treatments act to temporarily bring you to a 'safer range', while the body works this temporary kink out of its system?

I clearly know that my platelets are low, given my current symptoms, so a CBC won't really tell me anything I don't know. The question is, whether to wait it out or treat with prednisone.

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Questions for Those Experienced with ITP 4 years 2 months ago #47128

  • weirdjack
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I have read that ITP usually resolves itself within 2-6 weeks.


For some possibly...if it is 'acute' ITP.
'Chronic' ITP is another matter entirely.

.

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Questions for Those Experienced with ITP 4 years 2 months ago #47130

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Weird Jack,

How do you go about defining Chronic and Acute?

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Questions for Those Experienced with ITP 4 years 2 months ago #47132

  • Melinda
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DelnStyle wrote: Weird Jack,

How do you go about defining Chronic and Acute?


I'm not Jack but I'd define Chronic as forever and Acute as temporary.

And then there is this:
www.itpfoundation.org/itpdefined.htm#Forms%20of%20ITP

Forms of ITP - Acute or Chronic, Primary or Secondary

Acute (temporary) thrombocytopenic purpura is most commonly seen in young children. Boys and girls are equally affected. Symptoms often, but do not necessarily, follow a viral infection. About 85 percent of children recover within 1 year and the problem doesn't return.

Thrombocytopenic purpura is considered chronic when it has lasted more than 6 months. The onset of illness may be at any age. Adults more often have the chronic disorder and females are affected two to three times more than males. The onset of illness may be at any age.

Primary ITP, also know as Idiopathic, is when ITP develops for no known reason

Secondary ITP is associated with other illnesses such as an infection or autoimmune disease, or occur after transfusion or taking certain drugs, for instance cancer drugs.



I really wish my body had known that ITP was just a kink, but it didn't and ITP has been with me since 1989. I also have low Immunoglobulin G - however that came over 20 years after ITP so I'd say my ITP is primary and chronic.

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Questions for Those Experienced with ITP 4 years 2 months ago #47133

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Melinda,

Interesting. My issues seem to follow a viral infection. I would likely label mine as acute.

In that case, I'm assuming I need to 'ride this out' so to speak. If necessary, I've responded before 5 years ago to prednisone. Perhaps I can refrain from taking this and wait a week or so.

Here's a question though: HOW DO YOU KNOW WHEN TO INTERVENE?

I have read if there's non-stop continuous bleeding; Large patches of bruising and purpura rashes. Perhaps those are worthy of medical intervention.

I have only a few sporadic purpura (dots) and then a couple of wet purpura in the mouth, but that's about it.

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Questions for Those Experienced with ITP 4 years 2 months ago #47141

  • Sandi
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Deln:

You are the calmest person I've ever met. I don't know if that's good or bad.

We are telling you that you need to intervene. I can't make it any plainer than that. ITP can be acute after an illness, yes, but if symptoms such as blood blisters appear, you need to speak to a doctor. Having acute ITP doesn't make it NOT serious. Wet purpura is a sign that bleeding may occur.

I am usually pretty laid back with ITP advice and mostly reassure people that they will be fine, but not this time. If you and your doctor are both willing to ride it out, great, but I'd want the opinion of the doctor if I were you. Please don't make this decision on your own. Most of the time if there is non-stop bleeding, it's too late.

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Questions for Those Experienced with ITP 4 years 2 months ago #47143

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DeIn, while you have ITP symptoms, there is NO WAY to know it is acute. Acute is a label that is used after the fact. Right now you have low platelets, and it sounds like they are low enough that you should be seeking medical advice.
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Questions for Those Experienced with ITP 4 years 2 months ago #47144

  • Sandi
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P.S. You wanted advice from people who are experienced with ITP. You got it!

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Questions for Those Experienced with ITP 4 years 2 months ago #47160

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In adults the vast majority have chronic ITP. In children the majority have acute ITP. In any case I don't imagine that you do have acute ITP as your counts are usually around 90. That sounds like chronic ITP to me. For me, I had to treat for the first 7 years or so and then was able to stop treating.

If you see blood blisters in your mouth then there could well be bleeding further along the gastric tract too. So best to treat. You may only need a quick blast of treatment to get the counts to stay up on their own again or maybe a longer treatment will be necessary. Whatever it takes is what you need to do. We've all been there.

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Questions for Those Experienced with ITP 4 years 2 months ago #47166

  • Melinda
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DelnStyle wrote: Melinda,

Interesting. My issues seem to follow a viral infection. I would likely label mine as acute.
HOW DO YOU KNOW WHEN TO INTERVENE?

I have read if there's non-stop continuous bleeding; Large patches of bruising and purpura rashes. Perhaps those are worthy of medical intervention.

I have only a few sporadic purpura (dots) and then a couple of wet purpura in the mouth, but that's about it.

Deln we really can't tell you when you need to treat - you have to do what you have to do. I never have had wet purpura in my mouth and I've had ITP for 26 years. Mine was triggered thanks to a gamma globulin injection, my "remission" bit the dust due to a tetanus booster. Everyone has a different story as to when their ITP was triggered

My opinion - you are here asking questions so you are concerned and should get a count done and then you know where you stand.

You said you had ITP some years ago and prednisone worked - again, my opinion and expert I am not, you have had ITP all this time and now your count could be dropping. You may want to label yourself as acute but it sounds like you are chronic.

Why not do what the good doctor in my signature says: check it out!

Let us know how you are doing!!

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Questions for Those Experienced with ITP 4 years 2 months ago #47187

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There is now another category for ITP known as 'persistent' which is between 'acute' and 'chronic' and that was the category I was placed in. The parameters for persistent ITP are that it lasts longer than the timeframe for acute ITP but less than 12 months after which it would be deemed chronic ITP.

Acute ITP usually (but not always) relates to children whereas adults generally have chronic ITP. I had my first experience with ITP at 55 and for some reason it only lasted 9 months (Feb 2014 to Nov 2014) until I went into remission where I still am today at a consistent 200+. It was a difficult time for the first 4 months when I ranged between 0 & 5 and had extensive blood blisters (and later painful ulcers) in my mouth, lips and tongue as none of the treatments (Pred/IVIG/Dex/Cyclosporine/Rituximab) had worked. Thankfully NPlate finally worked for me and once my count went above 10 all the blisters and ulcers cleared up. I could have lived with the bruises and purpura but I do not want to experience the blisters/ulcers again so I would recommend avoiding them at all costs.

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Questions for Those Experienced with ITP 4 years 2 months ago #47224

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Hello Sandi and Others:

This is all such thoughtful dialogue, I appreciate this. Here's where I'm coming from.

5 years ago, when I had ITP, I didn't have any actual symptoms, but happened to have a blood draw. The blood draw showed I had significantly low platelet counts. This made the Hemotologist freak out, and immediately ordered treatment (even though I had no outward symptoms such as purpura, bruising, etc...)

Essentially, that Doctor, 5 years ago, treated me based on numbers.

Let's fast forward to what we know now.

My current "ITP" is a function of immune disregulation. This current ITP occured because of a viral infection which has now produced a potent immune response, destructing my own platelets. (This is why I call it acute, as it's in response to a foreign pathogen which triggered it). That's neither here nor there though, the point is whether it's acute or chronic, my immune system has been triggered to destruct my platelets. (Though, I did read that acute ITP occurs end of winter/early spring which is the same as my issues).

So, because my body is currently in a state of immune disregulation, I need to have my body 'work through' and clear this out, without my platelets becoming dangerously low enough to have critical internal bleeding. Based on research, this episode of ITP triggered by viral infection, could last anywhere between 2-6 weeks.

So here's the real question (to me at least) regarding medical intervention.

While I'm waiting during these 2-6 weeks, have my platelets become critically low that I need medical invervention. Meaning, what is the right time to receive and begin treatment of prednisone?

We don't want to go STRICTLY by the numbers. Treatment by the numbers means nothing if there's little to no symptoms. That is the body's way of 'handling it'. So I'm currently trying to 'ride it out".

I haven't had the wet purpura in a couple of days, and the small spontaneous purpura seem to be going away, with no real new ones to report. I do not have any massive bruising (or any bruising at all at the moment).

To me, this points to waiting on actually having medical treatment. A CBC is going to tell me nothing I don't already know, which is, YES, my platelets are decreased. But my BODY isn't exhibiting severe enough symptoms to warrant and intrusion of steriods or other treatments at the moment.

So here's my guideposts for determining whether to seek medical attention:

1. Significant bruising, or large bruising easily.
2. Constant wet purpura
3. Lots of purpura on the body, clusters or rashes of them.

In my non-medical opinion, IF these conditions occur, then that would likely signify that my counts are perhaps below 10,000. BUT, anything above a 10,000 level is deemed 'safe'.

That, at least, is my understanding and my take on this situation thus far.

I'm curious if any of you have taken a similar approach, more symptom-patient oriented rather than freaking out about specific blood count numbers?

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Questions for Those Experienced with ITP 4 years 2 months ago #47228

  • weirdjack
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I'm curious if any of you have taken a similar approach, more symptom-patient oriented rather than freaking out about specific blood count numbers?


Many of us do not freak out at low counts. We know what happens and what to look out for.
Mine stay in the 9k to 16k range usually with treatment.
I drop lower now and then, and sometimes go a little higher (had a spike in January of 21k).
After over 12 years now on the ITP Adventure Ride, life is continuing on just fine.


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Questions for Those Experienced with ITP 4 years 2 months ago #47233

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I my non-medical opinion, it seems like your symptoms are subsiding since the "wet" purpura in your mouth is going away. That is a good sign. 4 1/2 years ago when I had my most serious bout of ITP with platelets in 0-5 range, I had the wet purpura blisters for about 1 1/2 weeks even with treatment (while in the hospital). I had the IVIG and Decadron pulses. Slowly, the blisters started to go away. I tried to stay calm like you and I opted for more conservative treatments. My platelets stayed low for about a month--then started going back up with the Decadron pulses.

I stay with a conservative approach as there are serious bone marrow problems in my family (and most likely my genetics). But, it would be a good idea to get a CBC to see where you are at.

Dee Dee

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Questions for Those Experienced with ITP 4 years 2 months ago #47237

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I think where we differ is that you assume that your low counts will last 2 to 6 weeks and I don't. Most children with an acute ITP have low counts for several months and many for a year or so before it goes so I'm not sure whether the information you are finding is correct.

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Questions for Those Experienced with ITP 4 years 2 months ago #47238

  • Sandi
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You said: Here's a question though: HOW DO YOU KNOW WHEN TO INTERVENE?

These are the best responses that were given to you by 3 different people:

DeIn, while you have ITP symptoms, there is NO WAY to know it is acute. Acute is a label that is used after the fact. Right now you have low platelets, and it sounds like they are low enough that you should be seeking medical advice.

Wet purpura is a sign that bleeding may occur. You wanted advice from people who are experienced with ITP. You got it!

I think where we differ is that you assume that your low counts will last 2 to 6 weeks and I don't. Most children with an acute ITP have low counts for several months and many for a year or so before it goes so I'm not sure whether the information you are finding is correct.

You are making too many assumptions. It does not matter if ITP is acute or chronic. If you have symptoms such as blood blisters, treatment is warranted, or at the very least, a call to the doctor. You keep asking when to intervene. We are telling you. You are assuming that all will be well in 6 weeks. You can't possibly know that.

ITP changes. Antibodies change over time so what may have been your experience in the past might not be your experience now. You also can't assume that you only have destruction going on. Production is also a prominent problem with most ITP patients. That's neither here nor there though....you have symptoms. Acute ITP can occur during any season. So can chronic ITP. ITP doesn't care what season it is.

You're right, a CBC is probably useless because you know that your counts are low. No, you do not have to treat by counts and on that we agree. But you should treat by symptoms and it seems that you'd rather argue about it than consider our suggestions.

It may very well be that you are on the way up and all will be well. I really hope that is the case. But if not, you are putting your life at risk. That is your choice.
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Questions for Those Experienced with ITP 4 years 2 months ago #47246

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I completely agree with Sandi.

When I think my platelets are low, I either want to know (out of curiosity or because I'm amenable to treating) or I don't want to know (if it would be inconvenient to treat or if I'm ornery). However, I've had ITP (relatively active ITP) for 14 years, and I have had more than my share of CBCs so I know what my pattern is and think I have a good idea what is safe.

So...do what I say, not what I do, and if you're relatively new to ITP (new enough not to know the warning signs) then err on the side of caution and at least get a platelet count so that you can track which direction you're headed. Otherwise, an extremely low platelet level and the consequences can blindside you.

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Questions for Those Experienced with ITP 4 years 2 months ago #47281

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Deln,

That trip to the doctor that you are avoiding could easily become a trip to the ER, or worse.

Ann is right.
Tamar is right.
Melinda is right.
DeeDee Marie is right.
Sandi is right.
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Questions for Those Experienced with ITP 4 years 2 months ago #47296

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Hello Friends,

I appreciate the dialogue as I'm learning about this condition all the time. I'm also not trying to be argumentative, but just stating the case for a watch and wait path, rather than quickly jump in to treat immediately based on a CBC.

Also, what I've been saying is what my Doctor has been saying. Namely that without large and easy bruising, clusters of purpura and wet purpura that doesn't cease, combined with levels under 10,000 then, and only then, would treatment be recommended ( in my case ).

This might stem from the fact that last year at nearly this exact time, I had a similar immune response, but it triggered to destroy my hemoglobin, not platelets. This, ultimately resolved itself without any treatment.

The reason I'm more 'against' treatment is that the body is still capable of repairing itself. I am wary of unnecessarily putting steroids or artificial means of treatment in my system... (so long as it's not absolutely necessary).

Rob had a quote, and perhaps he could elaborate. Instead of prolonging going to a Dr visit, this could end up being an er visit.

My question is, again, when is it even truly necessary to go to the ER? When you feel like you have a brain bleed? What is your own threshold based on your experience when to go to the hospital

Also, As a Side Question -

For those of you who have gotten elective surgery procedures done, how do you do do with ITP or at least active ITP?

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Questions for Those Experienced with ITP 4 years 2 months ago #47297

  • Melinda
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Deln - only you can answer your questions because you know your body we do not.

My new hematologist said she would be fine if I had to have brain surgery with a count of 50k [she was giving an example].

As to a brain bleed - I know someone who does not have ITP, fell & hit head on tile floor, had a brain bleed and did not know it for a long time! Thankfully surgery took care of it and all was well.

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Questions for Those Experienced with ITP 4 years 2 months ago #47300

  • Sandi
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I'll try this one more time.

A brain bleed is what you try to avoid by seeking treatment prior to. By the time you think you might have a brain bleed, it could be too late. It's a type of stroke which could result in brain damage or death.

I agree with you 100% about senseless treatment. I myself would not treat if symptoms didn't warrant it. But if I had blood blisters in my mouth, I would not play around with it. I probably wouldn't go to the ER, but I would be calling my doctor as soon as I could.

If your symptoms are going away, that's great and you can probably get away with doing nothing. But if you still have wet purpura, I'm not going to change my answer no matter how many times the question is asked.

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Questions for Those Experienced with ITP 4 years 2 months ago #47322

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Is there any evidence that a treatment that failed before splenectomy might work after a spleen removal? Also, it looks like winrho is the only treatment that is not used after splenectomy. Rituxan, TPOs and steroids still seem to be used after splenectomy. Is that an accurate statement?
Diagnosed Jan 2015 at age 50 with 13,000.

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Questions for Those Experienced with ITP 4 years 2 months ago #47323

  • Sandi
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Emily:

I used to think that treatments might work better after splenectomy, but that has not been the case around here. Most people don't get the splenectomy until they find that nothing works, and those treatments usually still don't work after the surgery if it fails. More and more though, people are trying, and responding to TPO's which nearly always work.

Yes, Rituxan, steroids and TPO's can be used after a splenectomy, but the risks are higher.
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Questions for Those Experienced with ITP 4 years 2 months ago #47331

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Deln,

My hemo always sends me to the hospital or ER if my platelets are heading downward (under 10,000) as he doesn't know how I am going to react. Usually, (at least the last time) they just keep heading down to 4,000 then to "0". He's not sure how I am going to be and he wants to stabilize me or just make sure I am okay. This would be my trip to the ER. I was at his office the one time (with no symptoms) and my platelets were at "0". This was after being released from a two-week stay in the hospital. He insisted I stay in his office until he got me a bed in the hospital. I respect my hemo and will follow (within reason) his instructions. I am pretty liberal, but I notice that each time I've had an ITP episode, they haven't been exactly alike.

Dee Dee

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Questions for Those Experienced with ITP 4 years 2 months ago #47440

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Just an Update:

So I've hung in there, and haven't seen a doctor. Most of the purpura (sporadic spots on the body) and gone away and the one small bruise has healed).

I did notice something VERY ODD and coincidental?

It appears that I have a strange correlation with the WET PURPURA, after I drink alcoholic beverages. (I.e. I drank a margarita last night and got a small one in the mouth) and then, when this all started a couple weeks ago, I had drank a couple glasses of red wine).

So.... is alcohol the link?

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Questions for Those Experienced with ITP 4 years 2 months ago #47441

  • Sandi
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Alcohol can thin the blood, so if counts are low, symptoms could increase. Usually, a small bit of alcohol will not cause counts to drop unless it has quinine in it like tonic water, and then only if you have antibodies against it. There is a type of quinine induced thrombocytopenia.

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Questions for Those Experienced with ITP 4 years 2 months ago #47528

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DelnStyle - I'm sorry been out of the loop for a bit just read this post. I have a question or two if you do not mind. Just trying to clarify what I am reading.

If I am correct. You have a history of ITP, you were recently sick, and you found blood blisters in your mouth right?

At some point you said these are your doctor's words so does this mean you have been in contact with your doctor?

I must have missed something but I do not see a recent platelet count? Have you checked your count?

If you haven't than why not?

If you are in contact with your doctor has he not advised you to get a count?

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