Cayenne pepper/ capsules

I heard that Cayenne capsules would or could help up your platelet count? Has anyone else heard or tried that? I have had ITP for about a month, and Steroids aren't working, I have done Rituxon treatments ( four of them) and those aren't helping. Im not sure I want to get my spleen out but I cant stay at a high number for more then a few days(went from a 141000 to a 10000 in four days). Any suggestions would be appreciated.

How did you already have four rituxan treatments if you've only had ITP for four weeks? Rituxan is generally given once/week, did they give it to you immediately after diagnosis? Rituxan can take 4-12 weeks to take effect. If your doctor isn't aware of that and gave you Rituxan as a first treatment, you might want to consider consulting another hematologist.

I've never taken cayenne capsules but I eat tons of way hot stuff all the time and it never affected my counts either way. I have heard that cayenne capsules cause quite an interesting sensation in the stomach, and then later on shall we say. Do let us know how it goes.
Erica

I've never heard that either and I've been around for a very long time.

Erica's right - you are very new to this, you need to give the treatments time to work. Most people experience ups and downs in the beginning.

I found out on March 23 on a Wed, when I was seen by the specialist that day. I was at a 2, by friday I was at a 1. come Monday I was at a 0, he didnt want to take chances so he started me on Rituxon. When he ran all his test, from MRI to full body ultrasound to see if anything else was wrong nothing was. I even did the Rhino treatment when I was at the 1 (that friday) because of my blood type. He is aware of that, he was hoping to see some improvement but I went from 140 to a 10.

I totally understand that Im new at this whole thing. But that was an odd one I was told thats why I asked.

My Rituxan didn't "kick in" until week 9 which is longer than most experiences and shot up rapidly over 4-5 days and has stayed there for approx 10 months and counting. I know low counts are scary to say the least (saw 0 for weeks with my first episode 10y ago and 10 with my recent episode). IVIg is a temp option that could last up to two weeks to give you and MD time to assess - no guarantee like everything else related to ITP. I wouldn't dismiss Rituxan's possible effectiveness just yet.

There is no single "cure" and what works even marginally for one doesn't relate to effectiveness for the next person. If there was a "sure fire" treatment this group would know because there are long term ITP survivors here. It's possible you have an acute case which means it could reverse but it might be chronic and come&go, or simply stay - no way for an MD to know. Lots of folks on this site live with very low counts and have learned to monitor and manage their condition so there is hope for each of us.

I'll caution you about embracing any treatment option as the "cure". There are folks here who have spent $$ with little material results. It's tempting because this disorder is wicked scary when you hear the MD mention worse case outcomes which are relatively rare. However relatively doesn't mean much when it's me!

Keep us posted and ask lots of questions - there are very compassionate ITP'ers here who can help your knowledge ITP grow which empowers you to be an active participant in your ITP treatment.

What's a Rhino treatment? Is that WinRho? Or some sort of nose blasting? Or Chinese medicine ground rhino horn?
Erica

Hi, and welcome.
I am not really in a position to give too much advice on treatments as I am still pretty new to all this (about 15 months). But I so understand what you are going through, when first you are told you have ITP it is all sort of a big panic. I remember when I was first dx there was three doctors in a hospital room talking about this ITP thing I had never heard of telling me that I was in danger of my brain bleeding and a lot of other worst case senerios, ordering a bone marrow biopsy ( first thing you think about is cancer), ordering blood transfusions, platelet transfusions, iron infusions ect enough to make the stablest person worry.
You are then put in the position of what do I do now? This is urgent, we need to get those platelets to a normal level I was told. My doctor the suggested a course of Prednisone (with the warning "you wont feel like yourself when you are on it") are you kidding me? I thought a few side effects I can handle that, I really could have jumped in front of a bus I felt so bad, didn't know if it was the medication or the ITP. Turns out it was the medication.
So I decide to do some research, find all this scary stuff on the net and start to think this is it life is over.
I talked to my Dr, asked alot of questions and he tried to answer them but mostly he said this is a condition that demands respect and there is no way to say if it's here forever or just short term.
I then found this site and have learned so much. At one stage early in the ITP journey I remember I begged my Dr to remove my spleen, I just didn't want to deal with this. He thankfully declined to do this.
What I am trying to say is don't rush into anything and don't make any big decisions about spleen removal(especially if your on prednisone).Listen to the people on here they have lived this for a long time and they give great advice.
I think (please tell me if I am wrong) that we all have this big panic attack at first, sometimes not helped by the medical profession. As time goes on you start to settle down and relax a bit. Make a plan on what you would like to do, treatments that you want to try.
I am now in the next stage, no treatments but counts are dropping and I think maybe even now after all these months there is still that little bit of panic there at each blood test.
Take your time on this journey, give treatments time to work. It took 10 months of Pred mostly doses above 40 mg to get me to a 130 (been higher since that due to surgery).
I am so glad now that the Doctor refused spleen removal for me. Good luck and I look forward to hearing how you are going.