I feel like I'm the only person with Cyclic ITP

I've had ITP for 14 years now with my platelets dropping as low as 1. it wasn't until 4 years ago that my hematologist told me that I now have Cyclic ITP. It's when my platelet levels drop down very fast whenever they want then rise again within a couple days. Every month almost like clockwork now they drop down to 4 it's so weird that its always usually 4. My gums start bleeding, I get blood blisters on the insides of my cheeks and on my tongue, patechia, and bruising. Every hospital I go to it seems like they want to learn off of me more than treat me. Always 10 doctors asking me the same questions over and over and over again. its so annoying!!! and frustrating !!! can I please talk to someone else with this disorder please ? anyone?

Very interesting. So, do your platelet counts go back up without treatment and if so what do they go to and how long do they stay there? Notice any connection with diet or other things going on in your life? Never heard of Cyclic ITP myself but then I'm new to this whole thing.

Not sure that I have ever heard of this type of ITP either, but my platelets do drop monthly as well unless im on my Prednisone treatment at the time of course. Do you have a treatment? My platelets last month fell to 6k which seems to be my low number continuously as well.

Well, I'm 13 years too late to this thread, but I too have cyclic thrombocytopenia. There is also a Kayla telling her story on this site and I think she's the same Kayla. She seems to think that she went into remission after a 72 hour fast and changing diet to vegetarian, etc. I'm a little confused on the timing of these two things, though. Maybe they aren't the same Kayla, but both with cyclic?... They both got it when they were 13, so, I guess she fixed things after this post. 

While you had the hematologist point out your cycle, I actually did the pointing out myself, and to a hematologist that disagreed, at that. 

Well, I had a 39 day cycle, 17 days up and 22 days down. Now, after being on danazol (as a male), my 35 day cycle is 10 days up and 25 days down. My nadirs (dips) are getting shorter, but still going around 4 platelet count or sometimes less. So, danazol, while it is changing the cycle is still not really beating the cycle at all and only helping the dips a little bit, so still might not be the maintenance drug that really works, if there will be an answer... It needs to do better, since I've already been on it 4 and 1/2 months, and its strong. 

russ wrote: Very interesting. So, do your platelet counts go back up without treatment and if so what do they go to and how long do they stay there?  Notice any connection with diet or other things going on in your life?  Never heard of Cyclic ITP myself but then I'm new to this whole thing.

 To answer Russ's question, yes platelet counts go back up without treatment. Mine used to go a little higher than the 400ish they are now. My highest count was low 500's, which isn't too bad. If a tpo agonist was used, it could have gone up really high. How long do they stay up? Not long, at the very peak, just hours I suppose, but they take longer to go down than they take to go up. 

The cycle is powerful and accurate, so, I mean blood-thinning foods and things like that can have an effect, it seems, but the cycle is all-powerful. 

charlottem005 wrote: Not sure that I have ever heard of this type of ITP either, but my platelets do drop monthly as well unless im on my Prednisone treatment at the time of course. Do you have a treatment? My platelets last month fell to 6k which seems to be my low number continuously as well.

My second doctor had not heard of it either. I wouldn't call it cyclic itp, though. I believe the proper term and only term is cyclic thrombocytopenia. A continuous drop to 6 monthly does sound like cyclic thrombocytopenia. Of course its different for a woman and more common in women, too, and matching natural cycle, if you're a woman.

The thing to do is especially try to mark down your nadir every cycle, and try to also know what your peak is doing and mark that down, too. Then you can map to see just how consistent the cycle is. In my case anyway, it is very very consistent and predictable. The more consistent it is, the more undeniable what your diagnosis is. 

Then as far as treatment, they talk about cyclosporine or danazol. Which is all well and good until these don't work... But, maybe they will. 

OR... is the answer with Kayla? Its right in front of me?? She said she fasted for 3 days, calling it an immune system reset...

Is this what we all should be doing? Resetting our screwed up immune system, instead of all this other craziness?

pdsa.org/itp-warrior-kayla

It seems like Kayla got a little lax in her blood draws at the time of her fast, so she doesn't seem to know the details, and then after 2 months she was taking monthly blood draws, but that is not the way to figure out cyclic thrombocytopenia, either. If you've lost track of your cycle or if it has possibly left, you would need weekly blood draws, unless, as a woman, you know when to look in your other cycle. So I suppose that could be the case. 

Here's a great video, in my estimation, on this 3 day immune system reset:

drjockers.com/3-day-fast-immune-system/

And you don't have to be over 40. I believe Kayla was under 30, when it fixed her cyclic thrombocytopenia.