Hpylori ITP vs Autoimmune ITP and many more questions and my summary

Acute H Pylori Thrombocytopenia VS Acute Idiopathic Autoimmune Thrombocytopenia? Thoughts Please….

I wanted to send out a quick post to see if anyone has any thoughts or ideas for me or may be struggling and this information will help you… My next doctor appointment is tomorrow, Monday, June 12, 2017 and we’ll see where the platelets are then. Never a dull!

My questions:
* Anyone ever have platelets of 1 million and what to expect? Mine were 1,114,000 to be exact on June 8, 2017. Do you think that has to do with being poisoned by antibiotics and steroids, an allergic reaction, or just getting rid of h pylori or just that is how ITP goes?

*At what number do you worry about a blood clot with platelets? Thoughts on type of exercise or foods to eat other than baby aspirin to decrease risk of clot?

*At what number do you worry about a bleed out with low platelets?

*Does your IVIG last the same amount of time each administration? Mine lasted 2 weeks the first time and am on 2 weeks post 2 IVIG today.

* Anyone ever had positive H Pylori Blood but negative H pylori Breath test but still been treated with antibiotics? How many rounds of antibiotic triple therapies did you need? What actual antibiotics were you on and for how long? How long until you were uninfected?

*Do you think antibiotics were still absorbed if I pooped out everything in a muddy liquid (sorry for saying-but important info) after each meal from May 28- June 5? I’m worried they were not absorbed? Overall under the best circumstances the antibiotic therapies first 14-day treatment is only at a 90% effective rate.

* Has anyone else developed ITP soon after visiting a third world country?

* Has anyone else had trouble getting a doctor to agree to refer you to an infectious disease doctor? The infectious disease doctors want a referral (even though it is not an insurance requirement).

* Has anyone gone to Mayo Clinic or other specialty places for ITP or h-pylori?



My Summary: Before April 1, 2017 I was a Healthy non ITP 56 year old woman living in Colorado. My summary of events:

*May 23 to April 1, 2017. In Costa Rica for Trip. During trip did things where h-pylori could have infected me: rode horses, ate food, applied on my skin already used by a possible infected Costa Rican person anti-itch cream for rashes, got kissed on cheek from sweaty Costa Rican guide, went down very long 5 minute natural mountain water slide where I could have swallowed hpylori..

*April 9 until May 7, 2017 Back Home a week-Noticed a sore on face used that Costa Rican cream on it, Bruising on extremities, Tired, Not too hungry, bloated. But truth, pretty asymptomatic.

*May 8 2017 Dr Appointment to find out why multiple bruising

May 9, 2017 Platelets were 4,000 Admitted to hospital
5/9-5/11 First Hospitalization given one bag platelets, IVIG , Dexamethasone and told I have Idiopathic Thrombocytopenia

May 11 to May 26, 2017 Followed by hematologist office. I was on 100 mg Prednisone a day.
Platelets we in the 400,000’s but went down to 10,000 on May 25 when the IVIG wore off. IVIG lasted 14 days
At home researching I found that hpylori is sometimes associated with ITP from Google articles. I requested a blood test from my hemotologist which he did and it it came back h pylori positive. But they say that does not show active just past infection. So I went to a (not great-but I could get an appointment with) gastroenterologist who gave me a breath test that came back negative so he said no active infection and I believed him.
May 25- Platelets tanked to 10,000 at dr appointment visit. Got NPlate shot and told to come back to office next day for IVIG.
May 25 Went home after Nplate shot to read about it and thankfully out of nowhere found Christina’s email on this website where she had a negative breath test but they treated her anyway and her h-pylori was eradicated and the ITP went away.

May 26, 2017 Next day-Platelets 7,000 Dr said go for readmission. Armed with the H-pylori false negative breath test possibility I convinced my dr to allow/approve of me being treated with the hpylori antibiotic therapy.

May 26 to May 28, 2017 2nd Hospitalization –I was given one bag platelets, IVIG , and Dexamethasone. Also added was H- pylori eradication therapy:
Amoxicillin, flagyl and clarythromycin and a PPI for 10-14 days.
(Platelets-5/26 11am.@ 7,000, 5pm @ 52,000, 5/27 2pm @ 68,000 on 5/28 9am 102,000. …….

May 28 to June 11, 17
Discharged on 1000 mg of Prednisone. Went into prednisone poisoning due to synergistic effect with the clarithromycin (I found out.) I was moon face, had diarrhea, etc. thankfully this association referred me to a hematology specialist in Colorado who is terrific. My new dr I switched to on June 1, saw how bad it was an weaned me down speedy quick! I am down to 5 mg now and soon to none so I actually look and feel normal. (And on I was on 80mg of prednisone May 25 when the platelets tanked to 8,000 when the IVIG wore off )
5/31 392,000 Platelet Count, 6/5 1,179,000, (yes a million), 6/8 1,114,000.

June 12, 2017 Day 14 post IVIG. (that is when I tanked back down to 8,000 platelets two weeks ago. I go to doctor tomorrow to see what the platelet count is. All and any thoughts and comments are helpful in this maze of questions. Platelet info: 5/31/17 was 392,000 Platelet Count, 6/5 - 1,179,000, (yes a million), 6/8 - 1,114,000.

Thankful for all of you and this forum to reach each other.

Cindy

Cindydiamond3@gmail.com

Cindy:
Wow. Platelets over a million is not good. That doctor was definitely over-treating you. You were given way too many treatments at once. He wasn't giving any one treatment time to work before throwing another one at you. Most people would get an N-Plate injection and wait a week even if counts were low....they wouldn't have two other treatments given a day or two later. People with ITP are prone to clots at any count, and high counts and N-Plate both raise that risk. Baby aspirin is the only thing that I am aware of to reduce the risk of a clot. Omega's might also help. Blood thinners are not usually protocol for high platelets.

Christina is only one of two people that I've ever known of to get remission due to H. Pylori eradication. It hasn't worked all that well for the rest of the people here who were positive. Studies have shown that eradication seems to do more in Japan than here in the US, presumably because it is a different strain of H. Pylori. That's not to say that it won't work for you, but at this point, you have no idea what is working.

We've had some people here that went to Mayo, but they got the same answers as everyone who went to any knowledgeable hematologist. You are still early in this journey and hopefully, this new doctor will be much better than the first. Getting off of Prednisone was a good first step. That is one less drug to push your counts up higher.

I hope you get better results tomorrow and those counts are down. There is a chance that you had an acute case and will go into remission, but only time will tell. Let us know!

Hi Sandi,
You are so kind to reply to me (and others) so promptly. Oh by the way, that initial doctor had me scheduled for Rituxin too on that Sunday morning before I left the hospital. Thankfully, I read the side effects and got scared; good thing I decided to hold off given my current million platelet status. Just out of curiosity, do you have a preference over n-plate vs the daily pill (I don't know the name) that is similar to it?

And, do you think that more people are just not treated for hpylori to the point of eradication of it? It is really hard to diagnose and treat with gastros saying the breath test is negative and not telling the patient that maybe it is a false negative?

I am glad you are in remission! I'll keep you posted and thanks for being there!!!! Now I'm going to read a bunch of information from the website.

Thanks again!!!!!

Cindy:

Good thing you held off on Rituxan! My goodness! I've seen the kitchen sink approach before, but I think you win. There is normally never a real hurry to get counts up high. The IVIG that you had initially would have been enough for a few days to see what happens with your counts. If it didn't work or when counts started to drop, that would be the time to start something else.

Personally, I have never used N-Plate or Promacta. They both work about the same way, but it's really a preference over whether you want to take a daily pill or get a weekly shot. Some people make the decision based on what insurance will cover.

No, I don't think that people are not treated to the point of H. Pylori eradication and that is why they don't get remission. People have gone through two rounds of antibiotics and also, the studies done would probably have made sure that eradication was completed. A fecal test can also be done and that might be the most reliable of the three. The breath tests are probably the least reliable. I'd also trust the blood work more than the breath test.

Read and learn. Knowledge is power.

Wow, what a story.

Just off hand I can't think of a more dangerous combination than IVIG and NPlate/Promacta. Then they added a platelet bag and Dex to the mix too. Oh, oh my!

A bit on the H-Pylori. The blood test only indicates if you have antibodies to it in your body. Your body develops antibodies to fight it off. The antibodies do NOT go away with the bug, but only slowly years later. If you've never taken antibiotics for it, though possible, it is unlikely that the bug was eradicated without antibiotic treatment. Most folks have little to symptoms when the bug is present. Your body is fighting it off - both by stomach acid and antibodies in your blood.

Given your event description, it sounds possible that H-Pylori had not multiplied to level detectable by either breath or stool tests. Is that what happened, I dunno. Also, with either of those test, there is a long list of things one cannot take within a couple of days before the test. Pepto bismal and similar OTC medications must not be taken before hand which universally cause false negatives if you do. Did you take anything before the test?

If on the other hand you've had H-Pylori for a long time one would expect occasional flare ups where the bug multiplied enough to become a nuisance. Have you ever had heartburn or similar kinds of stomach upset? Something where antacids provided relief?

Thanks for your reply. It is great being able to connected with people in the same situation with a lot of knowledge and compassion.
I wanted to report that my platelets were 500,000 yesterday. Thankfully out of blood clot territory of 1 million last week! My next lab is Thursday afternoon. My fingers are crossed. It is now, day 17 since IVIG, last time I crashed at 14 days post IVIG. Two week Antibiotic course was completed 2 days ago for hpylori, so I am doing my best to take probiotics and eat everything they say kills it. Hopefully eating broccoli spouts, green tea, apples, take Pepto bismal, etc will kill off any stubborn hpylori left. I have no idea how often to take the Pepto bismal if anyone has an idea.

(And by the way he had me at bat for Rituxin the morning before discharge. Thankfully, I refused it after reading about the neurogenic complications which looked at 10% to me. I guess I a lot of people do fine with it and I should not be scared of those complications if I do need it in the future but am thankful I did not take it then!

And to answer your questions, yes I was on PPI and ate and chewed gum before the breath test. And no, I never had stomach problems except 2 weeks after I came home from trip I felt bloated and took probiotics for 2 days.


Anyway...thanks to all of you out there and have a good day.
Cindy

Ahh, broccoli sprouts. You've been doing your homework.
I was eating a lot of brussel sprouts. On Pepto Bismal. It's been awhile. I think I took small amounts between meals - especially after dinner and before going to bed.

Certainly hope things go well for you this week. If you're bored, LOL, you might want to read 'Patrulla' posts. Something to note was that he/she did not respond to steroids. It kinda looks that may be true for you as well - would you agree?

If things don't go so well, if doc suggests Promacta or NPlate those might work well for you. May be sensitive to those. Low doses mean less side effects...

Thank you so much for your note, ideas and support. It really means so much being connected with people during this tumultuous and scary time. Thanks for sending me to Patrulla's posts, they were helpful. I'll keep you posted. Be well. Cindy

Disappointing numbers today 101,000, was 185,000 last Friday and 239 the day before on Thursday and 500 the week before. Dr. said Nplate if it goes down to 25,000.

I'm going twice a week for blood work to make sure I catch it early; don't want to be at 10,000 again. Does it make more sense to get nplate at 35,000 or 40,000 so it has time to work before the numbers fall below 25,000?

Is there any rhyme or reason on how fast the platelets go down? Maybe going down slow because some of the hpylori is killed? They want to retest for it but I have to figure out when to do the stool one timing after the antibiotics. So much to figure out.

How long have any of you been on Nplate? Do you like Nplate vs the pill that stimulates bone marrow vs Rituxin?

Do you guys think eating platelet producing food, eggs, milk, kale, whole grains help increase platelet count??

I hope you are all well. Thanks for being there. Cindy

(85/3=) 28 per day doesn't sound too bad. Maybe it will slow down or even hold at some number this week. Doc probably doesn't want to treat unless it is 30 or below. Insurance co. usually has a say in that as well - especially if you don't have bleeding.

As I understand from research studies, more folks go into remission with NPlate than Promacta. From what I've seen here on PDSA, only if you don't respond to IVIG (not your case) does NPlate have an advantage in that area.

About the foods. If you are allergic to any of those then it seems to be possible that allergen will lower your counts.

Are you off Prednisone?

Thanks for your thoughts and info! And I am crossing my fingers it stabalizes.
I want to clarify that what you said is that Nplate and Promacta are equal for me since I am an IVIG responder.
I was on Prednisone 5 mg for a week and he said to stop it today.
Your response made my day. Have a good one and be well.
Thanks! Cindy

Cindy:
Most do not treat at 35 or 40 just to catch it before counts fall more. Unless there are symptoms, the number doesn't really matter.

If you have been on steroids for more than 3 weeks tapering should be more gradual than stopping completely at 5mg daily
"Rapid withdrawal of long-term (more than 3 weeks) treatment with an oral corticosteroid may cause acute adrenal insufficiency (which can be fatal) and/or a relapse of the underlying condition" UK guideline from National Institute of Clinical Excellence. I've supplied the link but it may well not work outside the UK cks.nice.org.uk/corticosteroids-oral#!scenariorecommendation:7
Rob16 posted this a while ago. It is definitely worth a read
pdsa.org/discussion-group/7-treatment-general/29130-steroid-tapering-secondary-adrenal-insufficiency.html#54881

Cindy1 wrote: I want to clarify that what you said is that Nplate and Promacta are equal for me since I am an IVIG responder.

Yes, that is it. If one responds to IVIG it is not very likely one will achieve remission by either NPlate or Promacta. The numbers are so small it is hard to say there is a meaningful difference between the two drugs.

If 'Patrulla' story is a guide here it could take a while to get back to a normal count. If it is possible, cross your fingers AND remain relaxed !

You never know how anyone will respond to treatment. Everyone is different.

It is enough to make my head spin! Thanks and be well!

It is such an unpredictable situation! Just have to keep as even keel as possible. Now I trying to eat to kill the h pylori and to increase platelets! I've got to keep a sense of humor about it all, otherwise I will make myself crazy.
Thanks for being out there to share with. It helps when people understand what I am going through!
I hope you all are doing well!
Cindy