What if nothing seems to work?

I see a Hemo EVERY week for the past 4 years. Have been on Prednisone every day since. They have tried 7 different treatments with that. They can not get me to stabilize over 30. I have been as low as 8, and under 15 twenty times or so since that point. They now have me also on another steroid Danazol. From all the steroids I have a cataract and think I am a diabetic.They tried 6 treatments of Vinchristine. Now I have nerve damage. I now want to stop everything and see how long I last. I know that is stupid but don't know what else to do. Any advice?

Sorry to hear you're having such a rough go of it. Have you been on any of the commonly discussed agents, such as N-plate, Rituxan, or others often discussed here? Are you a candidate for a splenectomy? Has your treatment team come up with a new approach? Who is treating you and would you consider finding a new hematologist?

In other words, there may be more options to try.

Whenever I feel frustrated or overwhelmed by my medical issues, I remind myself of the old Churchill saying: "When going through hell, keep going!"

I was with AZ.Oncology for the past 4 years, now with the Mayo Clinic for three months. Had my spleen removed because of this at 17, 32 years ago. I have tried IVIG, N-Plate, Promacta, Rituxin,another one I can't remember. Then the Dr. at AZ.Oncology tried a chemo drug called Vinchrstine. I have been on predisone daily for over 4 years, 80mg a day down to 20mg. The steroids have given me a cataract and the chemo drug nerve damage. Now the Mayo clinic put me on 400mg Danazol another steroid. The meds have made me mean I guess, I have gotten all family and friends to forget about me. I really don't know which is better,ITP or the treatments. Thank you for listening.

Sounds like you've gotten yourself to the right people. I've only been on steroids twice, and I got quite testy and intolerant, too. There are entire threads here devoted to the topic of steroid side-effects, so you'll find plenty of people who understand that. The same for neuropathy, which I have for reasons unrelated to ITP and understand all too well.

There are a lot of people here who've had a rough time with ITP. I'm hoping that one or more of them will offer suggestions or experiences that I, with my relatively mild course, don't have. So feel free to vent. And check this thread or others for more ideas.

How long did you try Nplate and Promacta for? What happened? Did your count move at all? Sometimes these drugs are not used properly and if so another try would be worthwhile.

John,

If you are unresponsive to typical treatments, that suggests to me that your ITP may not be typical.
The old adage says that when you hear hoofbeats, don't be looking for zebras. I think it may be time for you to start looking for zebras.

Someone here recently posted that, after many years with ITP, he was diagnosed with H-pylori, he was treated, and now has normal platelets. There are other uncommon causes of ITP (Lyme disease for one) that can be tested for. Others report success from alternative medicine and from drastic changes to their diet.

Have you had a bone marrow biopsy? Usually unnecessary, unless you are looking for unusual causes. One important question is whether your low platelets is caused by slow production or rapid destruction.

Please pardon the badly mixed metaphors: even the best doctors have trouble thinking outside the box. They are trained not to look for zebras. I have no suggestion which rock to look under first, but I would leave no stone unturned. I would suggest that you study the "Resources" link at the top of the page.

John,
What sort of symptoms do you get with your low counts? If you have no bleeding or 'wet purpura', you might last a very long time without treatment. Long enough to get hit by a different sort of bus.
Erica

I started N-Plate at 1 micro gram,worked for a few weeks. then 2 micro grams,good for a few weeks then crash. We went all the way to 10 micro grams, one at a time. worked for a few weeks then my body got used to it then crash. The Promacta had the same results. Seems like everything they try works for a few weeks then my body overrides it. It is my immune system. Have had my spleen removed. And just today found out I have another auto immune issue. It is affecting my nerves.

When they are low for over a week or so I get the bleeding in my gums,easy large bruising, bad bleeding if the skin is cut or scraped, and the patekicle? blood spots all over my legs and arms.

I have had Three marrow tests. I had a bout of this in 1983. They took out my spleen then and all was good till 2010. Now they don't know what to do. me either

What is your goal as far as counts?

I would like them to stabilize above 20-30. To maybe not have to see a Dr. and have blood drawn every week except when I play hookie.

I'm assuming you live in Phoenix?

I remember at a pdsa conference trying a combination of 2 immune suppressants and seeing it that would work and if not combining others. I go to AZ oncology but am thinking of switching to mayo if I'm not happy with doc

Tis I that recently tested positive for H Pylori. Have had ITP for 10yrs. I had Two rounds of Rituxan early on with good response. First round gave me 16 months of 100k+ counts. Second round gave me almost 3 years of 200k+ counts. This past May the rollercoaster ride started again. The ride was more down than up. Several weeks of counts between 0k-8k. Bruising, petechia and blood blisters in mouth. Worst summer ever!! 4 or 5 Platelet transfusions, Prednisone, Dexamethasone (1), IVIG (3), Rituxan (2). Counts were not responding. Dr was suggesting Splenectomy as nothing seemed to be working. Consult was scheduled with surgeon. After doing a little reading on H Pylori and chronic ITP, I requested to have the H Pylori test done before the consult. Test came back positive. Consult was cancelled and was put on antibiotics for two weeks. 4 day's into antibiotics counts were improving. 6 day's counts went up even more. 13 day's and counts are as high as they have been in 10+ years at 293k. If I would not have done this test, I would be without a Spleen right now.

Yes I live in Phoenix. I have nothing bad o say about Arizona Oncology. They tried every thing they knew to try, even outside the box with the Vinchristine. I am now at the Mayo in Scottsdale. I will be asking about a H Pylori test. In 2012 I had 3 discs in my neck replaced. It took my Hemo 8 months to get my counts to be above 90 for two weeks in a row so they would do surgery. I was on Prednisone, Dexamethasone and N-Plate all at the same time.

I am glad you are here. You shouldn't have to go through this alone. I will honestly say my life with itp has been greatly improved by the people on this site. I have friends and family but it's helpful to talk to people who have gone through the same thing.

Until now I have never talked to anyone with this. Through all the roids I have chased most everyone in my life away. So glad I started to manage this myself.

Vdeutsch85 wrote: I am glad you are here. You shouldn't have to go through this alone. I will honestly say my life with itp has been greatly improved by the people on this site. I have friends and family but it's helpful to talk to people who have gone through the same thing.

I agree completely. I discovered through some trial and lots of error that most of the people I know, family and friends, want out and not in. So I compartmentalize, and rarely even mention platelets to anyone anymore.

Thank you all. I have felt so alone in all of this for so long. Now people that don't even know me care. This is a little overwhelming.

We're like that here. When I joined in 1998, I grew close to everyone and made some good friends. Odd, because I didn't ever think it was wise to be friends with Internet people. I still speak to them today even though some do not come here anymore. Those people got me through my worst. I didn't talk to family or friends about it much because I didn't want them to worry or treat me differently. In real life, things went on as normal as possible. The people here understood and taught me that life goes on with or without ITP. I vented, they listened and gave me ideas. Because of that, I didn't feel the need to vent with family and drive them nuts with it. Concern gets old after a while because it just goes on and on.

I'm glad you decided to take control of things. Living with ITP is so much easier when you do take control, make suggestions and research. You have to advocate for yourself and there are some things you can do to make it all easier.

And I will tell you never know. I now have met two people randomly with it. One was at a meet up for my dogs and we started becoming friends and found out her husband has it. Then earlier this week one of my paraprofessionals saw my pdsa sticker on my car and told me her son has it. It's a smaller world then you would think.

Don't get me wrong. I'm not glad I have it, but the people I have now found because of it are unreal. I have lived in some bad hoods. People turn their heads when really bad things happen and that with the people they live around and talk to daily. You guys have no idea who I am but are willing to help me as much as you can. It touches me more than you know.THANK YOU