ITP & Stomach Issues - Prednisone? Infection?

Hi! I'm new to the world of ITP; I was just diagnosed in March so I'm still getting used to eveyrthing. Has anyone else had problems with their stomach as a result of being on Prednisone? I've been having some dull achy pain right below my rib cage as well as in my lower abdominal region. Both my primary care doctor and Hematologist said it could be a side effect of the Prednisone so they have me on six weeks of Prilosec. Has anyone else experienced this? My hematologist has also mentioned that there could be a possibility that I could have H. pylori. If anyone out there has tested positive for H. pylori, would you mind sharing your symptoms or how you came to find out that you had it?

Thanks!

Amy

Welcome to the board! It's a great place to learn about itp and share experiences. I had wicked tummy issues on pred but i did find that the the PPI (proton pump inhibitor) such as nexium helped quite a bit. Hope you find relief soon

Prednisone has some of the wildest side effects and it does not affect everyone the same way. Initially I had indigestion and eventually most of the other listed side effects.... and I did not have H. Pylori. I suggest you Google 'prednisone side effects' to get a better understanding of the drug.

I tested negative for H pylori- ....

Sometimes I have weird stomach stuff- I used to wonder too if it was from the Pred....

What were your counts when you were diagnosed???

Yes, Prednisone can cause stomach issues. I had a lot of acid (have reflux anyway) and had to use Prilosec. It's pretty common. Prednisone can wear the stomach lining.

I was tested for, and did not have, H Pylori.

Hi,
I tested positive for H. pylori, we tried treating it and I had an allergic reaction to the treatment. As far as I know i have never had any symptoms and my hemo said that it wasn't uncommon to not have any. We have left it untreated at this point. That's about all I know about H. pylori.
Andra

Thanks everyone for your responses! I actually went to my primary care yesterday and he is sending me to get a CT scan on my abdomen since the Prilosec isn't helping me very much (I've been taking it for 3 weeks or so). So we'll see what happens there!

Danelle - when I was diagnosed, I was at 4,000 and then dropped down to 1,000. At that point I was admitted for IVIG. Between the IVIG and the Prednisone, I think I'm back on track 3+ months later. I went on Wednesday and am at 257,000 right now! I was told not to get too excited about that though since I'm totally off the Pred now and my count will probably fall again.

Hi Amy,
I did some research and found these links bloodjournal.hematologylibrary.org/cgi/content/full/103/3/752
www.infectiousdiseasenews.com/article/37318.aspx
you might find them interesing. We will be doing the test for that and will advise you after the results.
Good luck to you
Selva

I was tested for H.Pylori and was negative. The studies suggest eradicating it works in Japan but nowhere else. They think it may be that they get a different strain there.

My prednisone side affects are a tender stomach area and it sometimes feels like it is knotted. I get slight headaches on occasion as well as some throbbing in my head. My eye lids might droop on occasion for a short period of time ( 1-2 minutes). I have trouble sleeping and usually do not sleep more then 6 hours at a time. I went to bed at 9:30 last night and was up at 3:30am wide awake. Most days I am up at 4am or 5 am from going to bed at 10 pm - 11pm. Some days I get tired and have to crash for a hour or two and the other days I just keep going on the 5 - 6 hours of sleep. Everyone is different and may have differnt side affects.

I've been on prednisone for 6 months now and that sounds like the prednisone. When I started prednisone, I use to take prilosec with it but that was just too much medication for me so I let the prilosec go. I just eat very well before I take the prednisone and that has helped me a lot.

I tested + for H-pylori but only because prior to my ITP diagnosis, I was having heart burn a lot. A little research about ITP led me to ask to get tested.

My mystery stomach pain has finally been solved!! After having an endoscopy, a colonoscopy, two ultrasounds,a CT scan and a HIDA scan...it's my gallbladder! I don't have any stones, but my gallbladder isn't functioning. My Gastro thinks that the Prednisone has irritated my stomach but all of my pain has nothing to do with anything in relation to ITP.

I'm meeting with my surgeon next week for a consultation. I'm relieved to know he is familiar with ITP and my Gastro gave him my whole backstory. He also knows my Hema so that makes me feel good.

With that all being said, has anyone else had any experience with this type of procedure & having ITP? My last count was great (244,000) but I just don't know if I will have to do anything preventative. I know that sometimes people have IVIg done a few days before just to get a boost.

Any advice is appreciated!

Thanks
Amy

Pred can make it feel like you have a stomach ulcer. My ITP teen takes 150mg zantac per day whenever she's on pred. (She's rarely used pred for ITP except to get counts up for dental extractions, but she had to use it for hiving with an illness last year.) I think generic zantac is ranitidine. It's pretty cheap, and beats stomach pain.
Norma

If your counts are good, you won't have to do anything different. Good counts = nothing to treat.

I'm glad you found out what the problem was. Good luck!

I am happy to report that my surgery went well! They ended up removing my gallbladder and my appendix with no problems. My count was really good (303k) so it was a perfect window of time to do the surgery!

My surgeon decided to take my appendix out too while he was in there given my past history with ITP. He said that it would be a good idea for him just to remove it while he was in there so that down the line I wouldn't get into a scenario where my appendix had a problem and I could possibly have a low count and therefore surgery would be risky. I was really impressed with his forward thinking and understanding of ITP.

Just wanted to share - I think my saga is over! Thanks to everyone for your thoughts and suggestions. I really do appreciate it!

Amy

Amy, do you mean the surgeon just went ahead and took your appendix, even tho there was nothing wrong with it? I'm sorry, but I think that was just plain wrong. Did you give him permission to do that? Or have you had issues with it before? In that case, ignore what I said.

My surgeon and I discussed this all prior to surgery. There was nothing wrong with my appendix, however, I did have lower right abdominal pain that led me to go to the ER a few weeks ago. Turns out it wasn't my appendix and the surgeon found some other issues while he was operating and fixed those as well. He and I decided it would be a good idea for me to have my appendix removed so I wouldn't ptentially have any issues with it in the future and possibly have a low count which could complicate things.

Removal of the appendix while in the abdomen for surgery is standard procedure in most of the US. I've known many people whose appendices were removed when they were in for uterine, ovarian, or intestinal procedures. The appendix is not thought to serve a purpose for modern man, and it's likely to "blow" in many of us. The surgeon was being proactive.
Norma