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TOPIC: Questions for Those Experienced with ITP

Questions for Those Experienced with ITP 3 years 9 months ago #51165

  • Ann
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Except that throbocytopenia is a rare adverse reaction to just about every drug out there, including antibiotics and ITP treatments.

Deln, what is your count now?
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Questions for Those Experienced with ITP 3 years 9 months ago #51166

  • DeeDee Marie
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Deln,

We all know that each one of is different in how we react to ITP and medications. I have had similar reactions to meds myself. Just always be careful whenever you are given a medication. Sometimes you might do fine and other times you might relapse. I, myself, find that sometimes the second time I am given one of these medications, I have a worse a reaction.

Glad you are now on the mend!

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Questions for Those Experienced with ITP 3 years 9 months ago #51167

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Without having had a count, I don't think it's possible to correlate a suspected drop with any medication.

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Questions for Those Experienced with ITP 3 years 9 months ago #51170

  • Melinda
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I agree - unless a count is done before, during, and after one can't say for sure a medication was the demon.

My count went up to 401k while I was sick - was it the illness or the antibiotic, who knows.

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Questions for Those Experienced with ITP 3 years 9 months ago #51178

  • DelnStyle
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I'm basing it off symptoms. I think my count is currently low still but t takes time to build up the platelets.

I've had those symptoms before, and it was pretty much the same as when I was under 5,000. I even, because of coughing so hard, had a little blood burst in the eye (white part). I was clearly extremely low in count.

This may hinder me treatment wise though moving forward because my CVID does cause problems which antibiotics help solve.

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Questions for Those Experienced with ITP 3 years 9 months ago #51179

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Deln:

My husband has normal counts but has had eye bleeding and petechiae twice due to coughing. I'be had very low counts and never had that. It can happen at any count.

People have been wrong about their counts many times. You don't know for sure until you have one done.

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Questions for Those Experienced with ITP 3 years 9 months ago #51183

  • Ann
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It is known that ITP often goes along with CVID. It does with me, so I don't quite understand why you can't just accept the ITP instead of wanting it to be caused by antibiotics. That would be highly unusual and far more likely that it is simply secondary to the CVID.

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Questions for Those Experienced with ITP 3 years 9 months ago #51184

  • Melinda
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I think Ann because she wants to put a "why" to her ITP and she is wanting that reason to be antibiotics.

"Thinking" is not a reliable platelet count - I don't understand Deln why you won't get a count so you know for sure whether your count is down.

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Questions for Those Experienced with ITP 3 years 9 months ago #51196

  • DelnStyle
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Hi Ann,

I definitely have ITP, no question.

If I'm always in a state of ITP, let's say my normal numbers are about 100,000. Then anything that deviates this number lower is what I'm searching for.

Antibiotics recently have done this. Other things like a viral infection in February which kicked off this 6 month episode, is probably another.

The antibiotic reaction though is difficult because I will need and rely on antibiotics going forward with my CVID to assist in preventing serious bacterial infections.

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Questions for Those Experienced with ITP 3 years 9 months ago #51203

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Deln:

Ann didn't say that you didn't have ITP. She said that ITP and CVID often occur together, meaning that is the reason why your counts drop. Since you have CVID and will need to take antibiotics, there may not be much choice. You said as much, so you know that.

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Questions for Those Experienced with ITP 3 years 9 months ago #51369

  • DelnStyle
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10/4/2015

Hi everyone. Just wanted to stop by and give an update. I go see my hemo in 3 weeks for my regular visit.

My platelet issues have temporarily ceased. I have a strong feeling the antibiotics brought me down. Next time I am prescribed antibiotics I am going to get a draw done before and then another 3-5 days later to see if it's a direct cause.

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Questions for Those Experienced with ITP 3 years 9 months ago #51374

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Ok. Have you had a count done lately? Good luck at your appointment.

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Questions for Those Experienced with ITP 3 years 9 months ago #51393

  • DeeDee Marie
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Deln,

I'm sure glad you are doing better. Hopefully, when you see your doctor, your platelets will
be okay.

Dee Dee

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Questions for Those Experienced with ITP 3 years 7 months ago #52002

  • DelnStyle
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Good afternoon everyone,

It's been awhile since I've posted, just wanted to give you an update on things in general.

Since I last posted, my platelets have fluctuated. I've been down to 8,000 one day, then 7 days later I'll be at 50,000. I am not doing any treatments for this, which, has been helpful that the doctor has allowed me to just watch and monitor. Now that we know that I may be at 8,000 one day, I may jump to 50,000 in a week, and therefore, the body will naturally respond or return.

The theory is that there may be something, a viral illness one week, or some other thing that may cause the swing in number. (I have small children that always have viral/illness spreading stuff).

Anyhow, I have noticed that I'm rarely symptomatic when 10,000 or above. In fact, the day my counts were at 8,000, I would have never suspected until I got my number back.

Anyhow, there's not much to do, I guess at this point other than just don't think about it until there's actually something that prompts more action.

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Questions for Those Experienced with ITP 3 years 7 months ago #52007

  • Sandi
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Well that's good, I guess! I'm glad that you are being monitored; that is the important thing. Platelet counts can jump around like that with ITP. Just be mindful of symptoms!

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Questions for Those Experienced with ITP 3 years 7 months ago #52013

  • DeeDee Marie
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Deln,

Thanks for giving us the update. A lot of us can manage with low platelets and it sounds like you are doing just this. After a while, I, too, noticed that the symptoms started to diminish. Good luck to you and please do keep us posted.

Dee Dee

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Questions for Those Experienced with ITP 3 years 5 months ago #52811

  • DelnStyle
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1/26/2016

Good afternoon all,

Just wanted to stop by and provide you all with an update.

I strongly suspect there's a correlation between antibiotic usage (or perhaps over-use of antibiotics) and platelets decreasing.

I'm happy to say (so far), that I haven't taken antibiotics since 9/3/2015, and since then, I have not had any platelet problems. (That I know of - Meaning, I haven't seen any symptoms of decreased platelets). That doesn't mean if I got a CBC today, I may be at 50,000 for instance, but it's certainly not the constant low-symptomatic blood blister type of ordeal. Thus, without any real symptoms having an effect on my every day life, I will continue to proceed without any treatment.

Now, all that being said, I may be taking antibiotics sometime in the near future and will have to assess and watch how the dosage may affect me.

I will certainly keep you all posted.

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Questions for Those Experienced with ITP 3 years 5 months ago #52813

  • DeeDee Marie
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Hello Deln,

I'm really happy to hear that you haven't had to take any antibiotics since last September! That is really great news. I agree with you. For some us, the antibiotics cause our platelets to go lower or even crash. It's always good to keep an eye on these things. I don't do well with some antibiotics and end up with an allergic reaction (so, I, too wonder what they also do to my platelets).

Thank you for stopping by and giving us an update. I'm really glad that you are doing well.

Dee Dee

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Questions for Those Experienced with ITP 3 years 5 months ago #52814

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Depends on the person and the antibiotic. I've had counts go up from some and drop with others. Then there could also be coincidence.

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Questions for Those Experienced with ITP 3 years 5 months ago #52821

  • DeeDee Marie
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That is right Sandy. It's just I am one of those persons who start to go into an Anaphylactic Reaction from some of the medications along the penicillin line. I really need to take them for certain types of staph infections--but I can only last about 4-5 days. After that it starts to effect my heart.

Most people would never be effected like I am. My husband can take just about anything and it doesn't bother him.

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Questions for Those Experienced with ITP 3 years 2 months ago #53992

  • DelnStyle
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4/19/2016

Good afternoon, I wanted to check in. Just went to the Hemo today for routine follow-up and discussion so I thought I'd post here too.

Things have been well in general. Did the standard CBC and came back at 50,000 platelets on the day.

It's funny how these things work, of course. Someone with these numbers would 'normally' begin to be potentially put on a treatment plan, or if they had an inexperienced doctor, the doctor may panic and immediately treat.

As many of you know who have followed this thread, I am not a fan of putting drugs into the body to treat. So long as you aren't actively bleeding and don't partake in 'risky' actions which could lead to severe bleeding, then I'm a proponent of 'riding it out' and letting your body fix itself. (It will, eventually). This all, assumes, that the viral induced event which set off your ITP doesn't keep reactivating your body's system and starting the cycle over and over every couple months. . . . in which case, medical invervention may be the only choice.

Anyway, hope all is well with everyone else.

I'm sure at some point I'll have another ITP Episode and I'll be back to update.

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Questions for Those Experienced with ITP 3 years 2 months ago #53993

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Thanks for checking in! I was thinking about you the other day.

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Questions for Those Experienced with ITP 3 years 2 months ago #54060

  • DeeDee Marie
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Hi Deln!
I, too, am happy that you checked in. And, I think you are doing fine at 50,000. It's been quite a while since you last checked in and your are doing good.

Did you mention before that you live in Arizona and you found your doctor on the forum list? I was just wondering because in Southern Calif. (Inland Empire), there are hardly any ITP doctors. I have to keep a very costly Medicare Supplement just to see my doctor; otherwise, I'm probably out of luck. I wish we had more doctors who know about ITP.

Take care and please do check in from time to time.

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Platelet Transfusions 1 year 3 months ago #62944

  • KarenK
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DelnStyle wrote: 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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