Remember Me     Forgot Login?   Sign up   •  Web site Help & Info

!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

Hello

More
7 years 9 months ago - 7 years 9 months ago #62130 by Dean
Hello was created by Dean
Hello fellow ITPers.
Happy New Year!!
Has been awhile since I have been on here, like 6 yrs!! Thought I'd share my recent bout of low counts. Due to low Ig levels and ITP, I spend most of the fall/winter with respritory illnesses. Almost always winds up being a sinus infection/bronchitis. Had no issues all summer. Back in Oct I caught what was going around. Whatever it is, sure is a tough one to get rid of. I am still trying to get rid of it. Many people feel like they are pretty much over it and re-catch it again. Twards the end of Oct, I noticed my feet were peppered in petechiae, also blood blisters in mouth. Definate signs my count is below 10k. They were 8k. This turned out to be the worst bout of low counts in 14 yrs. I spent a week at or near 0. I had 3 IVIG infusions, 2 dexamethasone infusions and 3 platelet transfusions. Nothing was bringing my count up. I did a round of Rituxan (3rd one in 10 yrs). 2 weeks ago my count was 269k. Highest I have been in years!! Having counts checked on Wed. Now if I can just get rid of the cough!!
I tested positive for HPylori a few yrs ago, which saved me from a Splenectomy. I responded well to the eradication of HPylori. My platelet count responded within 4 days. Remission lasted for about one yr. Retested for HPylori, test was neg. Still have Spleen. Splenectomy is a last resort for me. Also discovered low Ig levels a few yrs ago.
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
7 years 9 months ago #62135 by Hal9000
Replied by Hal9000 on topic Hello
Hi Dean. Reading your posts have been quite an interest to me because of your earlier remission by merely having hPylori treatments. That was a pretty rare event.

Anyway, about your current cold/cough/respiratory problem. One of things I've read here on PDSA is that some (cold) viruses can cause an increase in counts. The suggestion is that those that are bronchitis like can have this odd affect on counts. So I have to wonder. Will your counts go down a bit from your unusual high level if you get rid of that cold/cough?

Congrats on your latest Rituxan remission.
More
7 years 9 months ago #62157 by Dean
Replied by Dean on topic Hello
I was making plans to meet with surgeon to discuss Splenectomy. I told my Hemo I wanted to eliminate the possibility of HPylori. I was kind of glad it came back positive and was able to cancel the meeting with Surgeon, keeping my Spleen!! It was one of the happiest moments on this rollercoaster!!
I dont always tank with an illnesses like I did this last time. I am due for a re-check today, so will see where the count is at.
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
7 years 9 months ago #62160 by Hal9000
Replied by Hal9000 on topic Hello
Oh, one other thing. Have you got any idea where you got the hPylori? Did you have some international travel in the past and picked it up there? Also, any ideas as to how long you had hPylori? They say you can have it and not realize it. My own experience is that I had some severe heart burn years ago and I think that's when I got it. Then went mostly dormant for years afterward.
More
7 years 9 months ago - 7 years 9 months ago #62167 by Dean
Replied by Dean on topic Hello
No clue how I got it. I rarely leave my state. Not sure how long I had it. Yes, many can have it and not realize they have it. Some are born with more of a resistance to it.
My count yesterday was 226k. Down from 269k two weeks. Still, a very good number. Rituxan seems to be doing well.
More
7 years 9 months ago #62172 by MelA
Replied by MelA on topic Hello

Hal9000 wrote: Have you got any idea where you got the hPylori? Did you have some international travel in the past and picked it up there?


I don't think you have to travel internationally to get h-pylori do you? I lived overseas, Japan and Hong Kong, did a lot of traveling while there and I didn't get it. Since then we have traveled internationally and yet I never got it.

"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
7 years 9 months ago #62173 by Hal9000
Replied by Hal9000 on topic Hello
No, not at all MelA.
As I understand, the genetic strain of hPylori varies in different geographical regions of the world. If one gets ITP from strains from east Asia or around Italy then eradicating hPylori can often resolve ITP along with it. Strains from everywhere else, like the Americas, eradicating hPylori rarely leads to resolution of ITP.

From what I've read here on PDSA form, for all those that have been treated for hPylori only users 'Patrulla' and 'Dean' have had ITP resolve. What is odd to me is that Patrulla reports not responding to steroids and Dean reports responding to steroids.
More
7 years 9 months ago #62223 by Dean
Replied by Dean on topic Hello
I was hoping eradicating Hpylori would resolve my ITP, but unfortunatly it did not. Steroids like pred and dex are not very effective for me. I get a bit of an increase, but counts drop when I taper off. I am really hoping the 3rd rou d of Rituxan gives me yrs of remission. My cou t last week was 225k, down from 269k prior. Hope the next cbc does not reveal a lower count.
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
7 years 9 months ago - 7 years 9 months ago #62232 by Hal9000
Replied by Hal9000 on topic Hello
Dean, I was just re-reading old posts.
pdsa.org/discussion-group/search.html?searchuser=dean&exactname=1&searchdate=all&order=inc&childforums=1&start=645
I had not noticed this before. A course of Rituxan treatments ended 8/22/14. hPylori treatments started 8/28/14. That is only a week after Rituxan. Is it possible hPylori eradication did nothing for you?
More
7 years 9 months ago #62238 by Dean
Replied by Dean on topic Hello
The HPylori treatment gave me about a year of remission. I testred for HPylori again due to low counts. Test was negative. First test for HPylori was blood, second was stool. 3