Lizabeth, you don't have this 4 week cycle every 4 weeks, do you? If you do, then of course its cyclic and you need to stop taking TPO agonist drugs. Some of what you say describes my condition of Cyclic Thrombocytopenia, although your peak is twice as high as mine, but you did take the TPO agonist drugs, and I have not.

My count tends to fluctuate pretty dramatically, most recently from 15 to 1,064 to 2 in the course of 4 weeks- I was being treated with the TPO agents and sometimes my body overreacts. Anyway yes, when things are swinging dramatically it doesn’t seem to matter if they’re shooting up or plummeting down, I’m exhausted. Whether for good or evil, my marrow is working really hard and IMO that’s just draining. For me at least, maybe for you too.

I have cyclic thrombocytopenia, so a bit different than everyone else, but, I'm wondering what people think of the fatigue of ITP or what people would guess would be most tiring with the cyclic form.

I know there have been times when I'm really feeling great when the platelets are dropping towards say 10. And I know I've been tired after the nadir and the platelets are rising quickly.

So I'm wondering if the biggest strain on the body is actually when my platelets go from 5 to 400 in 10 days. Maybe it is physically demanding for the body to produce platelets. Not sure, since I haven't paid enough attention thus far. This is probably not what people think would be the case... But it could be the case.

 Here's another drug, that seems to go well with some of your other drugs for ITP. 

It's ATRA or All Trans Retinoic Acid. It can raise the power of steroids and rituximab. Maybe a bit like taking TPO agonists, which maybe is why my doctor doesn't want me to add ATRA to my danazol. It seems like a good thing to try, since I'm taking danazol, with only some success, by itself. I have Cyclic Thrombocytopenia, so I understand that TPO agonists probably are not the right thing for me, so maybe ATRA isn't either, in my case. Who knows...

Its actually considered a retinol related to vitamin A, so the first A in ATRA can remind you of that, if you like.

ashpublications.org/blood/article/139/3/307/483466/An-ATRA-ctive-new-treatment-of-ITP

That sounds like a really tough journey. Six months of good platelets must have been such a relief, so I can understand why you’d want to discuss that approach again with your haematologist.

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.

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. 

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. 

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. 

Thank you!

Here's an example;  mylymedoc.com/false-negative-lyme-test/

The spleen is a major anti-body producer and the tests test for anti-bodies, so maybe that could be a factor.

Interesting that the test isnt 100%. How do you know then?
Honestly, a lot of what I am feeling checks more as Lymes...

While it does make sense that your body having to fight can exhaust you, a couple things about lyme; 

You are at higher risk of lyme problems without a spleen. Lyme tests are only 50 to 80% accurate. 

Thank you for your input! Maybe the tiredness is more from my lack of spleen than platelets. I do have a ton on my plate but also crave and grieve my life before ITP daily because this load is nothing compared to what I used to do.
I dont see much difference with the vitamin D or the B12. Except when I was given a super high dose of Vitamin D and experienced Vitamin D toxicity...that was fun!
Thanks,
Mandy

I actually thought maybe Lymes and had a test done but it came back negative. Thanks for that thought though...I am really open to anything at this point.
My Dr said that my body will be fighting "everything" harder without a spleen so I don't know if that just causes some of the exhaustion or what.
Thanks!
Mandy