FROM 40 TO 122 AFTER TREATMENT FOR HELICOBACTER

Yes, I was diagnosed with ITP a year ago. Only had low platelet count and bruises every now and then, but no other symptoms. Had Prednisolone (Deflazacort 60 mg a day) treatment for 4 months and platelets didn't go up at all, in fact they went a little lower.
I was changed to Azatioprine (two 20 mg pills a day) treatment and after 3 months, nothing! After an endoscope exam to see if I had Helicobacter Pylori it came out positive, was treated with 2 antibiotics for a little less than two weeks and...BINGO! waited about 2 weeks more to have a blood exam to see what had happened and fortunately the result is a wonderful count of 122!!!!!! I'm hoping this is the end of my ITP but I won't know until the end of april when I have my next hematologist appointment. Meanwhile I am sooooo HAPPY!!

I wanted to pass out the good news, it may help someone else. I'll let you know what happens later, hopefully I'll go back to normal. Have your doctor exam you for Helicobacter Pylori and...Good luck to all!

Good for you. I tested negative to HP so sadly it's a no go for me.

Good to hear that your count is up. Please keep us updated. The largest American study done showed no correlation between H Pylori and ITP, but their subjects had been diagnosed with ITP an average of 10 years prior to the study. My theory is that H Pylori must be eradicated before the immune system becomes permanently damaged by trying to fight it. Its just a theory, and it only applies to the cases of ITP that are caused by H Pylori, which is a low percentage of ITP cases. Still, even if it's an outside shot, it's well worth it for all new ITP patients to get tested for H Pylori and eradicate it if found. At the very least you have reduced your chances of getting ulcers, which could be a bad combination with ITP.

I mentioned being tested to my hema when I was diagnosed but he said I didn't need to be.

CindyL wrote: I mentioned being tested to my hema when I was diagnosed but he said I didn't need to be.

My Hematologist said the same thing. I requested the test anyway and he let me have it. If he said no I would have gone to my general practice doctor to get tested. The problem is that my Hematologist didn't order the H Pylori test along with all of the other blood work in the hospital prior to treatment. Once treatment began, no test could be accurate. The Omeprazole I was on to protect my stomach from the Prednisone could have caused a false negative on the endoscopy, breath, and stool test. My Hematologist ordered the blood test. I later found out through my own research that the IVIg could have caused a false positive. Since eradication my digestive system has returned to normal, so I think it was a true positive.

The second Hematologist I saw was impressed that I had already eradicated H Pylori. He said he would have ordered the test if it hadn't been done yet. The ITP expert I saw in Chicago said the research is inconclusive, but agreed that testing for and eradicating H Pylori can't hurt, and might help in a small number of cases. My count was already in the normal range before I eradicated H Pylori. If my count stays good, I will never know why. I hope it remains a mystery.

I had read many articles in my ITP research suggesting this could be linked, when mentioned to my son's dr, I was told no not in kids, I don't wanna put him through the testing.. So I guess not true for kids?? His Dr's feel nothing is related I can feed him whatever and nothing I do can help or change it!! (I thought maybe I was giving him something allergic to or irritated him) Anyway congrats to you hope your count stays high..ENJOY!!!

Why couldn't kids have H. Pylori? Of course they could.

The research is inconclusive and I've only ever seen one person here sustain counts after treating it.

Crystal, why is the doctor worried about the testing? I was tested (negative), and I can't even remember the test--so it couldn't have been traumatic!

It's not - it's breath, blood or stool. None of those is upsetting.

After reading about it on here, I asked for a test for H pylori when the nurse was taking the usual bloods last week, so he happily just took another vial - and the results came back positive. So, was in for a chat with the doctor this morning, and she told me the results, discussed why I'd asked for the test (some digestive "issues" that started in December, just before my count dropped again, and the discussions that I've read on here) and I've now got a week's worth of eradication treatment, aka 2 antibiotics plus accompanying anti-stomach upset stuff. Am being realistic about it, as I had 2 episodes of ITP prior to this, so it may be totally unrelated to my ITP but at the very least, maybe my digestive system will return to normal! She's arranging for a breath test to confirm it's been eradicated, probably a couple of weeks after the course of antibiotics finishes.

My count today was 13 (9 on Monday) so at least I'm not continuing the downward trend after the IVIg. Hopefully will stabilise at some level soon so I can make decisions about treatment - some pressure being applied for a splenectomy but have made it clear that I want the indium scan first, even if it means travelling down to England to get it, as my spleen is very dear to me and I don't want it removed unless it is the site of platelet destruction and I therefore have a reasonable chance of success from the procedure! Coincidentally, the antibiotics I'm on for H pylori include tetracycline, which would be the replacement for penicillin for me post-splenectomy, so at least I get to confirm if I can tolerate that in advance

Ha! the treatment for H Pylori can cause some side effects that the antibiotics on their own wouldn't so don't worry too much if you get some reaction. When I was tested my haematologist said she'd let my GP treat me if it were positive so that I didn't hate her when it made me feel bad.. LOL.

Sorry just saw this...I only wish I knew what he meant by I don't wanna put him through that, really I have no idea, that was the conversation, I mentioned it he says really, no not in kids, you don't wanna put him through that, than continues talking about other stuff. They see it as his body got confused and there is nothing we can do his body needs to figure out, oh wait nope we need these stop destroying them..They do not feel ANYTHING is related!!

Rachel, IVIg can cause a false positive on the blood test for H Pylori for up to 3 months after the IVIg treatment. Unless your test was done first, your positive result only means you might have H Pylori. The blood test checks for antibodies, and IVIg is made up of antibodies from thousands of people, many of whom undoubtedly do have H Pylori since it is very common. Now that you have begun the treatment, any other test could give you a false negative, and you can't stop the treatment because if you do have H Pylori it will become resistant to antibiotics that it is exposed to unless you use them long enough to eradicate it.

How high was your positive result? Mine was 1.41 on a scale where anything over 1.0 was positive. I couldn't find a doctor or website to tell me what the odds are a score of 1.41 could be strictly due to IVIG. My only indicator is my digestive system, which has greatly improved. If you know your exact score it might be another piece to this crazy puzzle.

Hi Dave,
Don't know what my numbers were on the H pylori result - will ask when I'm back at hospital on Thursday. I think though that the symptoms I've had, which started in December, nad which I thought were due to IBS and took peppermint oil for (had some success in controlling stomach cramps) are actually a pretty good match for H pylori, which is why I asked for the test. I accept that it might be a false positive, but both my doctor and I felt it was worth a try! I'll be happy for my digestive system to get back to normal, so that's my main hope out of this eradication treatment - any associated increase in platelet counts would be a bonus, but I'm not being madly optimistic about that, particularly given that I think my count will have dropped from 13 (last Thursday) as I've got lots of new bruises and petechiae over the weekend. Also feeling a bit spaced today, probably due to the eradication meds, which have induced major insomnia - not included on their list of side-effects, but hey, always glad to be different

I think antibiotics can cause a temporary increase in bleeding symptoms. I remember wanting to keep my counts up while on them. I was also on Prednidone. My platelet count did dip to 150 while on antibiotics, but rebounded. My digestive system got worse while on antibiotics, and didn't get better until I stopped taking Omeprazole. That is the same drug that helped my stomach before irradication. After irradication it hindered me. I stopped taking it in January and have been back to pre-symptom normal for over 3 months now.

Any increase in platelet count due to H Pylori eradication can take a month to occur, so don't lose hope in it yet, but you are right, the eradication usually just improves digestion. Platelet increases are a rare bonus.

Hi, can you pls tell me is this "indium scan" conclusive as to whether the spleen is the site of platelet destruction. My hemo. told us there's no way to tell for sure!! My son has had itp for 2 years, almost never over 20k. Rituxim failed. Haven't tried anything else because don't want to subject him to harmful side effects.

I don't have any personal experience with the indium scan, but here is what I have learned about it by reading this message board:

1. The scan can tell you if the spleen is the major site of destruction or not.

2. If the spleen is not the main site, splenectomy is unlikely to work.

3. If the spleen is the main site, splenectomy is still not guaranteed to work, but by eliminating the percentage of cases where the spleen is not the major site of destruction, you increase the percent of cases where splenectomy works.

4. The success rate of splenectomy depends on how you define success. The indium test can give you a good percent prediction of remission, but it cannot predict how long the remission will last after the spleen is gone.

5. Splenectomy is permanent. Many splenectomy remissions are not permanent. Some do last a lifetime. The spleen plays a much bigger role in blood filtering, heart disease prevention, stroke prevention, and cancer prevention than most Hematologists tell you before they take it.

My opinion is that the indium test is only usefull once you have decided on splenectomy. At that point, you should get the test to find out if the procedure will definitely not work before you do it.

My doctors are pushing for me to have a splenectomy, and I'm insisting on the scan before I would consider it, even if it means travelling to London (it's not done in Scotland). Personally, I'm so at ease with having no treatment at all, even with my count pretty low, that it'll take a fair amount of persuasion to have surgery. I am fortunate though that I don't bleed, even when I hovered between 2 - 4 for a few weeks, so not treating is an option for me (even if my doctors are very nervous about it).

Is your son having major symptoms with his count? - one of the main things I've got from this forum is that most people end up wanting to have treatment based on the symptoms, not the count, as long as you understand the risks and any constraints that might mean for your lifestyle and activities (I've had to give up martial arts, for example) It all has to be weighed up against the side effects of treatment, which I too have had enough of ...

Re. H pylori eradication, today's the last day on the antibiotics, side effects have stopped so have been sleeping again and not so spaced out now. I guess my counts over the next few weeks will show if it's helped the ITP at all, but I am happy that the treatment's been positive from a digestive point of view

Hi,

Just wanted to update you all on my platelet count after being treated for Helicobacter Pylori (I started this discussion group). GOOD NEWS and maybe hope for some: it has been 3 months since I finished the antibiotics treatment for HP and my count is a marvelous 231 (went up gradually) plus I haven't had bruises or petechias, and as I have said before, never had any bleeding.

Doctor told me to go down to 1 Azatioprine a day (I've been taking 2 Azatioprine 50 mg with no apparent result since november 2011) and hopefully in 2 months when I see him again and if I'm still in normal range, I wont have to take anything.

In that case it might mean that my ITP could have been temporary and caused by the Helicobacter Pylori. Also want to remind all that Prednisone never did a thing to me, I was in Corticosteroids treatment at the beginning of being diagnosed with ITP (little over a year a go) for over 4 months with no apparent good
result.

My Helicobacter Pylori was diagnosed with an endoscope test, don't know if it makes any difference.

Sure hope this might be helpful, so don't wait too much to have the HP test.

My best to all

Happy Patrulla:)

I am 72, and was diagnosed about three years ago. I've been taking 4 week treatments of Rituxan every six months, which seems to help. however, after insisting that I be tested for H-PYLORI (which was high positive and treated for 10 days with Prev-Pak) my count has been in the 125 area...which I am happy with !
There seems to be a connection, as we have seen in various discussions. I encourage all ITP sufferers to have the breath test. You may just be surprised to find out that H-Pylori is a trigger for your ITP.

Thanks for this post and hope everyone takes your advice.

My daughter was diagnosed in March 2012 but only today did hematologist suggest testing for H-pylori, which we will do ASAP. Doing research now on H-pylori -- are there separate symptoms for this? My daughter does have -- mmm, how shall I put it? -- an "active" GI system, full of gurgles, gas, and irregularities. I had ITP and both my parents had serious gi issues. this probably isn't relevant though.

Interestingly, my 66 year old brother appears to have ITP, In process of being diagnosed. To go with his diabetes I, which came on at age 45.

There aren't any specific symptoms for Helicobacter Pylori except that it causes stomach ulcers. Sadly, there hasn't been much success with platelet counts after treating it. It's definitely worth a go though. I did get tested and was negative.

thanks, Ann. Worth a shot. Our hematologist seems to think there is a bit of a connection, at least sometimes, and when there is -- success in treating. Just wonder why she didn't bring up before. but, here we go, and fingers crossed. Good to know if she has it, I guess, and if so, to treat it, no matter the ITP outcome.

Good luck with your daughter Firkins, I hope she turns out positive for Helicobacter and it works for her as well as it did with me. I had my hematologist appointment over a month a go, I'm still at a wonderful 238 count. Dr. told me it is probably the end of my ITP problem but I still have to be checked every 3 months at least for a year just to make sure. Haven't had any bruises or pethequias since then.
One thing: I live in Colombia and the helicobacter test was done with endoscope which is a little uncomfortable (tube down your throat to your stomach for about a minute) I guess the breath test works as well, I don't really know if it makes a difference.
I am not taking the one Azatioprine pill I was taking since then.

My next appointment is in october, I expect to continue well, will keep you posted.

Several tests are available for detecting a H. pylori
infection. The best test, at present, is a combination of
endoscopy and biopsy. For an endoscopy, the child is
given medicine to make them sleep and a flexible fiber
optic tube with a video system is inserted into the mouth.
This allows a direct look at the lining of the esophagus,
stomach and small intestine for ulcers and inflammation.
Several small tissue samples (biopsies) are taken and
analyzed for signs of inflammation and to identify the
bacteria


I never stop reading and researching, I learn something new all the time (although I may never find the answer for my son) His Dr. said I didn't wanna put him through that, I did not understand why and a few of you also asked..I am not sure if this is what he was thinking (and we haven't seen him) but maybe this what he was thinking???

I am not sure but I think I will be bringing it back up because you have said it can be done through blood, stool or breathe and at this point if it was even a 5% chance this is the answer I don't see how it can hurt..

I sure think it is worth a try Crystal Lee, I would bring it up again to your sons doctor. A breath test is not at all uncomfortable and it might bring new hope for the solution. Let me know what happens. Good luck!!!

Christmas 2012 update. I am happy to say that last blood test to check platelets count was a wonderful 239 count. Seems that my ITP problem is definately over after the Helicobacter pylori antibiotic treatment.

Hope this info is useful, may you all have a wonderful and happy christmas, and a best ever new year!

Patrulla :kiss:

Yes and regardless H Pylori is something you want to get rid of if you have it so by all means always get the test. Mine came back negative so it's of no help but at least I know I won't have H Pylori causing me stomach cancer or whatnot.

Two years ago I had Helicobacter Pylori after eating at a restaurant but after some antibiotics it apparently went away. A year ago I got this horrible stomach virus that made me constantly vomit and the last time I vomited was 10 years prior to that, and I believe my ITP was caused by that. I had an ultrasound done when I was first diagnosed but nothing was found, I also had blood test done to determine if I had Pylori and it came back negative. I still feel like I have stomach problems and issues regarding digestion, I don't know what to do though.