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TOPIC: I am confused is this normal ITP or is it really weird?????

I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #59973

  • Cindy1
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  • I caught an infection of some sort in Costa Rica in 4/2017 that caused refractory ITP with platelets crashing as low as 1,000. No TPOs could stop the platelets from crashing. I finally got cured 10/2017 after getting Rife Therapy & Avatar assited homeopat
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Hi,

Newly diagnosed ITP in May; I am confused is this normal ITP or is it really weird?????
Every time except the time I was on triple antibiotic therapy my platelets last only 2 weeks before another treatment is needed. But after the antibiotic treatment my platelets stayed up for 7 weeks.
Here is the summary:
5/9 I got IVIG, Platelets, Prednisone 100 mg a day for 7,000 platelet count. lasted 2 weeks before back down to 7,000
5/20 This time I got antibiotics, IVIG, Platelets, NPlate, Dex for 7,000 platelet count I lasted 7 weeks before I went back down to 7,000
7/12 I got only dex and nplate lasted 2 weeks platelet down to 2,000
7/28 I got dex and Nplate well see what my platelet count is tomorrow.

My doctors latest idea is to start me on Promacta once the platelets are 100,000 or less.

I still feel that no one has dug down to took at all possible reasons ITP is happening. I have an appointment at Mayo in MN? Is Mayo the best ITP place in the country to go to? Is John Hopkins or somewhere else better?

Any advice on my questions is appreciated. I feel very frustrated and not very competent on figuring this all out.
Thanks and Be Well
Cindy

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #59978

  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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Wow that's a lot of different drugs at the same time. From what I've seen so far the steroids and nPlate are usually not used at the same time. Unless you are tapering off the steroids while getting started on the nPlate.
IVIG is generally used as a rescue medication when counts are very low. It lasts 2-4 weeks. Shorter for some, longer for others.
Platelets don't do use ITP'ers much good since we kill them almost as fast as they pump them in.
Prednisone is usually the first medication we all get. It's cheap and most are fine taking it although if you have side effects they are miserable.
Dex is another steroid that is used, generally for short time as a pulse.
NPlate is usually given weekly after a blood count. There are a few that have learned their response and stretch that out to limit doctor visits.
Generally the goal is to maintain a count ~50, most of use would not treat at 100. That good count would mean we drop our medication dosage.
I suggest you seach the topics here for each of the medications to learn the way most are administered and their results, both good and bad.
Sandi will have some words of wisdom also when she is online.
GOOD LUCK.

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #59982

  • Hal9000
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Cindy, how come they aren't giving you NPlate once a week? Was your count above 200 on 7/19 for them not to give you a shot or ?
Hard to tell what's going on without counts and dosages. Are those 4 day Dex pulses or ?

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #59983

  • Sandi
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Cindy - ups and downs are totally normal, but you can't possibly figure out what is going on when you have so many meds thrown at you at once. Every treatment you've had are temporary for most people. None of the drugs are being used according to protocol which would give you more stability if used properly. N-Plate shouldn't be used only here and there when counts drop; it is a maintenance drug and should be used weekly. The problem isn't your ITP, it's the manner in which your meds are being prescribed. Promacta is a good next step, but you can't just take it until counts go up and then stop. You should take the lowest possible dose to maintain your counts around 50k until you go into remission or decide to try another treatment. That can take months or years.

Very few people ever find out why they have ITP. Going to Mayo or Johns Hopkins most likely will not give you that answer. They might take many vials of blood and do many tests, but you'll still end up treating ITP the same way with the same choices of meds.

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #59985

  • Sandi
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Cindy - read through this thread. It might help you to understand what's going on. Your situation is very similar to this one.

pdsa.org/discussion-group/5-newly-diagnosed-a-frequently-asked-questions/29449-3rd-crash-in-2-months.html?limitstart=0

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #59987

  • Cindy1
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  • I caught an infection of some sort in Costa Rica in 4/2017 that caused refractory ITP with platelets crashing as low as 1,000. No TPOs could stop the platelets from crashing. I finally got cured 10/2017 after getting Rife Therapy & Avatar assited homeopat
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Thanks for your reply and info. It might be because I switched to a new doctor on 5/23. Do you think it is weird that the doctor has not looked at bone marrow and other possible options due to my trip to Costa Rica 4/1/17 and my positive ANA, Positive SjorgensA, Fibrin Degrad Products hypo thyroid issues and antithyroidglobulin?
Summary with doses:
*5/9 I got IVIG, Platelets, Prednisone 100 mg a day for 7,000 platelet count. Lasted 2 weeks before back down to 7,000
*5/19 This time I got triple antibiotics and Nplate 5mg/kg along with same IVIG, Platelets, Prednisone for 7,000 platelet count. I lasted 7 weeks before I went back down to 7,000. I feel like the antibiotics were the key difference.
*7/12 dex 20 mg X4 days and nplate 5mg/kg, lasted 2 weeks *went up to 450,000 on 7/21 but in one week on 7/28 platelet down to 2,000 from 450,000.
*7/28 dex 20mg X4 days and Nplate 8 mg/kg for 2,000 platelet count *7/31 Platelets only 7,000

Do you think the antibiotics made a difference in the platelet count up to 1.3 million and staying high 7 weeks?
The doctor is going to start me on Promacta 50 mg I think.
Thanks again for your expertise!

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #59988

  • Cindy1
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  • I caught an infection of some sort in Costa Rica in 4/2017 that caused refractory ITP with platelets crashing as low as 1,000. No TPOs could stop the platelets from crashing. I finally got cured 10/2017 after getting Rife Therapy & Avatar assited homeopat
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Here are the numbers I have
7/14 10,000
7/15 28,0007/17 159
7/21 439,000 he told me not to check it for a week. Bad call....
7/28 2,000


Update Summary with doses:
*5/9 I got IVIG, Platelets, Prednisone 100 mg a day for 7,000 platelet count. Lasted 2 weeks before back down to 7,000
*5/19 This time I got triple antibiotics and Nplate 5mg/kg along with same IVIG, Platelets, Prednisone for 7,000 platelet count. I lasted 7 weeks before I went back down to 7,000. I feel like the antibiotics were the key difference.
*7/12 dex 20 mg X4 days and nplate 5mg/kg, lasted 2 weeks *went up to 450,000 on 7/21 but in one week on 7/28 platelet down to 2,000 from 450,000.
*7/28 dex 20mg X4 days and Nplate 8 mg/kg for 2,000 platelet count *7/31 Platelets only 7,000

Do you think the antibiotics made a difference in the platelet count up to 1.3 million and staying high 7 weeks?
The doctor is going to start me on Promacta 50 mg I think.
Thanks again for your expertise!

Cindy

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #59989

  • Cindy1
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  • I caught an infection of some sort in Costa Rica in 4/2017 that caused refractory ITP with platelets crashing as low as 1,000. No TPOs could stop the platelets from crashing. I finally got cured 10/2017 after getting Rife Therapy & Avatar assited homeopat
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Thanks Sandi,
I'll read it right now. I have a dr ordering c3 and c4 maybe he is looking for Lupus?
Cindy

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #59991

  • Sandi
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Cindy:
Your other abnormal labs could indicate possible Lupus or another autoimmune disorder. It might not have advanced enough to be diagnosed yet at this point. It might never happen if there isn't a trigger somewhere along the line. I had abnormal labs like that for a few years before I met the criteria for Lupus. I had ITP for 8 years before I began to have Lupus symptoms and abnormal labs; ITP can sometimes be the first symptom of Lupus (it is one of the Lupus criteria).

Many hematologists do not look for things like that, although they might at Mayo or John Hopkins. It's just not part of the ITP diagnostic protocol. If the results seem worrisome, you would be referred to a rheumatologist and/or endocrinologist to deal with that end of things, but would still see a hemo for the ITP and use the same ITP treatments. They are separate specialties and are treated separately. If you would get another diagnosis, ITP would then become secondary ITP instead of being primary ITP. You'd have one doctor to manage one disorder and another doctor to manage the other disorder. Treating Lupus does not usually fix ITP, although many times the treatments (such as steroids and other immunosuppressants) can treat both at the same time.

As for the antibiotics causing your counts to go up, I don't know. People have reported antibiotics causing huge drops in counts, huge rises in counts (usually temporary) or no change in counts at all. It's always hard to tell what might be coincidence and what is really causing what. I swear that Amoxicillin caused my counts to tank twice and I stopped using it for years. I started back up again after I went into remission and haven't had a problem with it since. Yes, it's odd but I really have no proof that it caused anything. Regardless, you can't use antibiotics as an ITP treatment due to serious long term side effects. My mom has been on them a lot for frequent UTI's and keeps getting C-Diff which can be fatal. Her C-Diff is under control but is not curable due to her frequent antibiotic use. Basically, she is mostly symptom free but is a carrier. Her UTI's cause her to become septic quickly due to her age so she has no choice. They will eventually probably stop working for her. If you have some sort of bacterial infection that is causing ITP, antibiotics could help, but trying to find a bacteria that might have caused ITP is like looking for a needle in a hay stack. They just don't test for that, except for H Pylori since it is a known ITP trigger. Usually though, treating H Pylori does not result in a curative fix.

I hope this helped some. Yes, C3 and C4 are common Lupus tests. Do you have any physical symptoms?

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #59992

  • Hal9000
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Cindy, I do recall someone in the past reporting an increase when taking antibiotics. But I don't think it was one of antibiotics used for hPylori eradication.

What I see as the reason your counts went through the roof and lasted for 7 weeks was the Doc combining IVIG and NPlate. Can't think of a potentially more dangerous combination, in terms of counts and clots, than that - especially if someone is sensitive to both.

Oh, oh my. They gave you a '5' NPlate dose and counts skyrocketed to dangerous levels again. No surprise that happened. But then upped it to '8' !! Are you sure that is right? The dose should have gone down, way way down, not up.

Is today's date April first ? ?

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #59994

  • Cindy1
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  • I caught an infection of some sort in Costa Rica in 4/2017 that caused refractory ITP with platelets crashing as low as 1,000. No TPOs could stop the platelets from crashing. I finally got cured 10/2017 after getting Rife Therapy & Avatar assited homeopat
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Yes I am sure I had Nplate x2 at 5 mg. on 5/19 and 7/12
7/12 dose brought it up to to 439,000 on 7/2.
On 7/28, my platelets were 2,000 and The dose given to me was 8mg/kg along with the Dex 20mg x4 days and I only went up to 7,000 today 7/31. I had blood blisters in my mouth, it was gross, they are resolving. Still have petechiae big time and bruises.
His plan is to start me on Promacta unless I tell him I want Nplate. Any thoughts? I might need another dose of Nplate to get the numbers up before I do maintenance Promacta? I like the idea of a pill once a day I guess but am open to your thoughts and experience.
The day I came back from Costa Rica was 4/1/17. That is when it all started, about 1 week later....
Also, thoughts on Mayo vs Johns Hopkins?
Thanks!!!!
Cindy

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #59995

  • poseymint
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Yes, I agree with Hal and Sandi. What your doctor is doing with drug dosing is dangerous and not according to protocol. For that reason I would say Yes, go to the Mayo Clinic and get another doctor.

In my opinion, (I'm not a doctor but I do have years of experience with Nplate) your hematologist should not mix dex pulses or IVIG with Nplate because it results in counts that are way too high- like 450,000. Nplate is supposed to be started at 1mcg/kg not 5mcg- that was too high. Then he increased the Nplate to 8mcg/kg!? wow You are supposed to only increase by 1mg/kg until the counts get up to 50K. Once you reach 50K, you stay at that dose until you see what happens and adjust accordingly.

There is a danger of blood clots when taking Nplate. The counts are supposed to be kept around a safe zone of 50K. I read once on the Amgen/Nplate website (can't find it now) that 80% of thrombotic events happen when counts are above 100K. So the goal is not normal counts but just safe counts of around 50. Infor from the Amgen website on dosing Nplate--
pi.amgen.com/~/media/amgen/repositorysites/pi-amgen-com/nplate/nplate_pi_hcp_english.ashx

We all have to study this stuff and advocate for ourselves because doctors don't always understand ITP. Plus Nplate dosing is confusing, its a bit unpredictable and takes some getting used to for doctors and patients. I have used Promacta and my counts were more stable. Also if you doctor starts you at 50mg Promacta, he is following protocol there. haha I'll give him credit for that! But if he adds in four or five more drugs along with Promacta, then thats not good. Okay my 2 cents- Good luck Cindy! Keep us posted- glad you found the forum!

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #59996

  • Cindy1
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  • I caught an infection of some sort in Costa Rica in 4/2017 that caused refractory ITP with platelets crashing as low as 1,000. No TPOs could stop the platelets from crashing. I finally got cured 10/2017 after getting Rife Therapy & Avatar assited homeopat
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Hi Sandi,
Thanks for the info. I don't know if I have any symptoms of Lupus. My hands used to be really dry. I get hot flashes all the sudden since 4/7. I was really tired for a while in April. I am tired now too.
Maybe it will be thyroid stuff. Who knows!?!
Be Well and thanks!

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #59997

  • Cindy1
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  • I caught an infection of some sort in Costa Rica in 4/2017 that caused refractory ITP with platelets crashing as low as 1,000. No TPOs could stop the platelets from crashing. I finally got cured 10/2017 after getting Rife Therapy & Avatar assited homeopat
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Wow that was really helpful. Do you think I would start Promacta if I am at 7,000? Do I need to wait a week after last nplate injection. Probably need to wait so no really high platelet count number.
Do you think it is weird that my 2,000 only went to 7,000 after 8mg/kg and dex burst after 4 days? I'm gonna get it checked tomorrow too. This is scary stuff on both low and high!
I'll read the website stuff you linked me to.
Thanks and be well.

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #59998

  • Sandi
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It's only been three days, Cindy. Your counts will be up again in a few days. At that point, you can start Promacta when your counts are in the right range.

I found out about ITP 4 weeks after a bad cold. What could I have done about that? Nothing.

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #59999

  • poseymint
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I agree that Promacta is probably a better drug for you than Nplate right now- because its a pill and is usually easier for most people. Promacta is easier for doctors too, there isn't so much variation in dosing. Usually (not always) counts are more steady with Promacta, not the wild swings of Nplate. I'm on Nplate now, have been for 2 years. I get 5mcg/kg and counts are like 33 53 81 62 44. They are up and down but generally hovering around 50K. My agreement with my doc is that the counts should be between 10K- 100K. If they fall in that range then we keep the dose the same.

Sandi is right about waiting to see what the Nplate and dex combo does. Sometimes it takes time to see the full effect of Nplate. With me it takes about 2 weeks. I get an injection every week so the dose will kind of piggy-back upon the last dose- it gets complicated! hah Everyone is different, you might see the Nplate peak more quickly. Also I wouldn't want to start Promacta until my counts got below 50K. Since 50K is the target, I would take the drug to bring counts up to 50K. But some doctors want to prevent a crash so would start Promacta sooner. I could see that strategy but again you have several variables so its hard to know whats working.

You are very aware of whats going on with your drugs and dosing, counts - that is great! You are putting the pieces of the puzzle together. It takes time to figure it out. We've all had to become ITP experts. take care :)

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #60000

  • Sandi
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You'd know it if you had Lupus symptoms. The fatigue you had is probably related to the steroids. My symptoms began with constant muscle pain. It felt like a mixture of the muscle pain you get when you have the flu and the muscle pain you get after you work out too hard. Then I got hit with symmetrical joint pain. It would move from my elbows one week to my hips the next week and so on. At one point, I could barely straighten my arms. Then I got hit with neuropathy that caused my arms and legs to feel like they were being pelted with sleet. I got fevers for no reason. I also have paresthesia, which is a crawly skin sensation and I am very sensitive to temperature changes. When I'm cold, my skin burns like I have a sun burn. I have swollen joints, dry eyes and mouth and recently, started to get hives when I'm in the sun. Extreme fatigue is also a symptom. So....if you had physical symptoms, you'd know it. NOT having them is a very good thing!

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #60001

  • Cindy1
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Wow those sound really hard. I am sorry you have to deal with that.

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #60004

  • Sandi
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And I hope you never have to.

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #60005

  • jayinchicago
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NPlate vs Promacta is a lively discussion.
My take is Nplate brought my life pretty much 95% back to normal.
Now I go once in 4 weeks get a shot of NPlate @ 2.2 mcg/kg or 250mcg vial.
My clinic is attached to hospital so they are open late, I take 30 minutes off work and get a shot with blood work.

I would never give this up for waking at 2am to take Promacta everyday.

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #60007

  • Sandi
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Jay - you've been lucky with N-Plate though. Most people find that they have too many extreme ups and downs with counts and cannot get stable. I'm so glad it's working for you like this! Hopefully it will lead you right into remission.

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #60009

  • Cindy1
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I don't understand the dietary restrictions. 2 am sounds tough. I thought it was just don't eat for one hour before or 2 hours after? I guess I'll need to look into the rules. Thanks and glad to hear you are good on NPlate.
Be Well.
Cindy

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #60010

  • Cindy1
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Thanks Sandi,
And I hope your condition improves and causes you have relief from the symptoms.

Cindy

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #60011

  • Sandi
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I'm sure others will chime in with how they handled the restrictions. I haven't used Promacta.

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #60012

  • Christine
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I am now on Promacta (100 whatevers) and the hospital pharmacist told me 4hrs before and four hours after. This is really difficult. My last food is at 6pm, tablets at 10pm then If I have to get up in the night and it's after 2am I have a glass of milk. I prefer the Nplate as there were no dietary restrictions. Note: have you ever noticed all the yummy food ads on evening TV it drives me crazy? ! :) :) :)

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #60014

  • Rob16
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Cindy1, I am curious about your trip to Costa Rica, and the fact that your platelets increased after a course of antibiotics. Were you ill with flu-like symptoms during or shortly after your trip? Did you encounter any ticks? Ehrlichiosis is a tick-borne bacteria that is common in Costa Rica, and can be a cause low platelets.

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #60017

  • Cindy1
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Hi Rob.
Yes! I was extremely tired when I got back from Costa Rica. Hardly could get out of bed in the morning for a while. And it is weird the only time I had a over 2 week remission was after the triple antibiotic therapy for hpylori found on a blood test.
Thanks so much for the thought about Ehrlichiosis. I do not know if I had contact with ticks. But I did have 3 itchy bug bites. I believe that there is some connection with the Costa Rica trip and this ITP I am experiencing. I am praying for that anyway. That is one of the main reasons I am going to Mayo. No one here seems to try and dig into what may be causing the low platelet count instead they want to throw medicine at me. Sigh.
Thanks and Be Well.
Cindy

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #60018

  • mrsb04
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Cindy the dietary restrictions aren't that bad. You soon get used to them. A spot milk in a cup of tea doesn't seem to do any harm. My counts are much more stable on Promacta than Nplate
www.us.promacta.com/chronic-immune/about-treatment/how-to-take/#tab-45206

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I am confused is this normal ITP or is it really weird????? 1 year 10 months ago #60020

  • Cindy1
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  • I caught an infection of some sort in Costa Rica in 4/2017 that caused refractory ITP with platelets crashing as low as 1,000. No TPOs could stop the platelets from crashing. I finally got cured 10/2017 after getting Rife Therapy & Avatar assited homeopat
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Good to hear!
Thanks!

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