I’d personally check with your hematologist before adding elderberry. With ITP, anything that might stimulate the immune system is worth a quick medical OK, especially since your platelets are stable right now.

Itpjourney wrote:  I have cyclic thrombocytopenia, and am interested, especially in the cyclosporine A, and maybe some of the other drugs you are on. I believe I will soon start with the Cyclosporine A. You did mention a year ago that you thought azathioprine may have been key to stabilize platelets. So maybe I should look into that more, too.

It is a bunch of medications different than most are used to seeing. You never saw any indication that you had a cyclic nature to your disorder, right? You might even say that these medications are for cyclic thrombocytopenia.

Like I say, interested especially for my case in the cyclosporine A. Is there something about it not working for a month and a half when starting on it, and maybe it stopping working after a month and a half of not using it? I don't understand if there is this delay, since I believe transplant patients don't start using it until surgery... 

I would love to use it just for the platelet drop phase of my cyclic thrombocytopenia, right after the peak, but it probably is not that reactive, hence the delay factor.

Thank you for your reply.

I am not sure whether I am cyclic thrombocytopenia or not.

The turning point in my case was my doctor found platelet antibodies GP IB/IX in my blood sample in Q4 2019, which could be the root cause of my ITP.

They then introduced azathioprine into my medical treatment.  Since then, my platelet count has been rising back to normal levels, and we have also phased out prednisolone and eltrombopag.

You can refer to my medical treatment in Q4 of 2019, when my platelet count crashed last time.

a. Cyclosporine A - 250 mg daily (am: 125 mg, pm: 125 mg)
b. Azathioprine - 50 mg
c. Eltrombopag - 25 mg daily
d. Prednisone - 20 mg daily
e. Folic acid - 5 mg daily
f. Famotidine - 20 mg daily
g. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

The reason for using acyclovir is that I had shingles in August 2019.

Itpjourney wrote: So drbean, you said this a year and 10 months ago: 

"We have tried several times to reduce the cyclosporine A to 25-75 mg daily, but the platelet collapsed after a week.

That's why we stopped at the current level and didn't move forward."

So, the cyclosporine did react quickly when dropping the dosage shortly. Interesting, for sure, thank you. So that was dropping it below 100 mg a day. I think I might start out at 150 mg times 2 (am and pm). I weigh 70kg, by the way. Azathioprine would be the other question. 

Or maybe I could do like you and take 100 mg cyclosporine twice a day and 50 mg Azathioprine. I will discuss with doctor in March. Not sure how he feels about starting 2 drugs at the same time. Probably not so much. I do read though that a side effect of azathioprine is bruising and bleeding, so I'll probably skip that at first.

I weigh 100 kg.

The antibodies could be causing the platelet count to crash so quickly whenever the cyclosporine dosage is reduced below particular dosage.

However, this time we believe it may be different, as I am still taking azathioprine, which lowers lymphocyte levels below the normal range.

Thank you. Actually, I'm 75 kg. Did the math wrong, before. 

I will tell my doctor this week on your antibody breakthrough. Could be helpful. He did ask for "many genetic tests", according to my insurance who declined because "fewer genetic tests should be requested first".

I notice that you said azathioprine lowers your lymphocytes below normal. My lymphocyte values are always low, but I suppose actually low normal, which would still be higher than "below normal".

I was diagnosed ITP in 2009 count of 6.(diagnosed Lupus/Sjogrens 2017). Tried steroids, Dexa, Promacta. Rituxin 4 doses of 375 brought my counts to 25 for 6mos.
Began Nplate in 2014 and have done well for 11 years. Counts have been in my safe range of 20-60. 
2023 after a Covid vax, my counts fell into 10-15 range and never recovered. Counts recently have fallen further to 5-12 range. Nplate dose increased to 625mcg did nothing. (side note: For me, low counts are not an emergency. Never had a bleeding event. I follow Dr Drew Proven’s advice to watch symptoms, not numbers.)

Feb 2026 I was scheduled for 4 Truxima infusions of 500 each. I did one infusion which flared up my Sjogrens neuropathy (burning mouth, wide-spread prickly pain, unwell) so bad that I canceled my next infusion. Doctor said it was ok to stop Truxima, watch and wait to see if it did anything. I am continuing Nplate weekly at 625.
After just 5 days post infusion, my counts came up from 7 to 24. Next week 21, following week 30. These are actually great counts for me. I’m very happy that one infusion worked to bring me above 20.
So will keep on NPlate and watching until I see doc in 3 wks. Then will decide if I can stop Nplate. And decide if I should do another infusion of Truxima. If my counts hold, it doesn’t seem necessary. I could wait, do another dose when counts fall again. My doctor lets me do pretty much what I want so I’m lucky there. For now, keeping my options open.

ps. Hematologist is excited for me to try a very new drug- Wayrilz/ rilzabrutinib. Cost is insane- $17,500 a month. It’s a pill. Medicare will pay. Patient pays max copay of $2100. per year. Thats too much for me to experiment with- what if it doesn’t work or is intolerable? I’m signed up to get a 1month free trial. It’s on their website, clinic advocate signed me up.

Doctor wants to start me on 150 mg cyclosporine once a day/morning. Doesn't mind me throwing in some papaya leaf extract, as long as he doesn't find anything in research against doing that. 

I told him about your GP IB/IX antibodies. He said it should be 1B, not IB, but otherwise, not too much comment. 

Yeah, I threw around Wayrilz and Tavalisse with my doctor today, but going with cheaper Cyclosporine, and if that doesn't work, Danazol, but I have cyclic thrombocytopenia.

It does kind of mess with your head the expense of a pill. Interesting, the "free" trial that you mentioned. I see it on the website, like you said. Certainly good to know. Actually, since I'm rare with the cyclic thrombocytopenia, you never know if the companies would possibly love to see how their product works with me... But I suppose a single person does not a trial make.

To my knowledge, the evidence for ITP in humans is currently very limited.

If you have concerns about your doctor, you may want to seek a second opinion from another hematologist.

Fyi, the latest figure of lymphocyte (%) on 12 Feb 2026 was 11. The normal range is 17.4-44.5

I just found a couple of articles combining grapefruit juice with cyclosporine, which is known to be a no-no to take grapefruit juice with cyclosporine. They realize that the drug will increase, so they use the grapefruit juice to lower the dose and the theoretical side effects. Interesting! First link talks about cyclosporine and grapefruit juice towards the bottom, so read on. 

haematologica.org/article/view/4931#:~:text=However%2C%20although%20there%20is%20no,an%20increased%20risk%20of%20bleeding .

ashpublications.org/blood/article/91/1/362/260351/Clinical-Interaction-Between-Grapefruit-Juice-and

Whether its safe, I don't know, say for the kidneys, but may be. Like maybe if your cyclosporine blood test is on the low side, instead of raising the dose of cyclosporine, could you take it with a small amount of grapefruit juice? Who knows?

I haven't posted for many years now as my ITP experience ended some 12 years ago.
A brief history before I get to my query.
I was a 54 year old male when I first developed ITP in January 2014 and ended up being a severe refractory patient.
I was given Prednisone, IVIG, Cyclosporine, Dapsone, Rituximab, Dexmethasone and Romiplostim (NPlate) before miraculously my platelet count returned to normal in December 2014. During this time my lowest count was 0 and on NPlate I did the roller coaster above the normal range and peaked at 1.2 million for a couple of weeks.
During this time and occasionally since when getting blood tests, I have had to get them redone in citrate as my platelets were clumped.
My query is, does anyone have any knowledge or experience if ITP can cause any plaque build-up in your arteries.
My GP suggested recently during my yearly health checks that I get a calcium score test done as my cholesterol levels have always been just above the standard range (ie 5.5 total with the 'good' reading normal and the 'bad' just above the normal range) but nothing of any real concern.
Anyway my calcium score was 1000 which is in the 90% bracket.
This was a total surprise and so I was sent to a cardiologist for further tests.
I did really well on the stress test treadmill and further blood tests were in the normal range however I had numerous plaque blockages, in particular around my heart.
I cannot understand the reason for this as I am a non-smoker, physically very active, had a good diet, have not had any chest pain or breathlessness and have no family history of heart disease.
I then had a coronary angiogram done with the hope of just having some stents however the situation was worse than expected and I am now scheduled to triple bypass at the end of March.
I had wondered if the treatments I was given could result on plaque build-up but Dr. Google said no (putting aside the very high platelet count when on NPlate).
I then thought I would check to see if ITP itself could result in plaque build-up and the response was that it could especially as the new platelets could be sticky and so I am wondering if ITP could be the culprit.
I apologise for this being a bit long-winded.
Regards Robert

I am very sorry you're going through this. This is big news, though!

This article says Platelet-to-Lymphocyte Ratio should be more like 106 than 141. Of course it could be much higher than 141. Mine goes higher cyclically, for sure. Since I have relatively low absolute lymphocytes. Good to know. Thank you for the heads up. I guess there's more to worry about... 

Maybe that's why Nplate says not to go over 200, I suppose depending on lymphocyte values. Who knew? Can we raise lymphocytes while we're at it?

pmc.ncbi.nlm.nih.gov/articles/PMC5336865/

Itpjourney wrote: Sandi was/is the best responder/thread starter on here. She lists a higher-end-of-normal count of platelets as her last number. She sometimes stated that she felt more comfortable with somewhat lower numbers. Anybody know if she is ok? I know she's been off for 6 years. She is dearly missed.

FNF

I have wondered about her too, because she helped a lot of people here and always explained things clearly. I have not seen any recent updates either, so I hope she is doing well and that someone who stayed in touch might be able to share news.

Unfortunately, Sandi has been MIA for a few years now.  She is sadly missed.
Hal hasn't been missing as long, but he is missed too.

No, not ready to get a second opinion, since I have my own opinions. I fixed the once a day dosage, since it was not giving a good number in the cyclosporine trough test. Not sure what the doctor was thinking there, with once a day. And I added grapefruit juice, which admittedly is not exactly recommended. 

Sometimes its best to have a doctor that lets you do what you want. If you feel you have a handle on your particular case, then that is what you want.

And getting results, I think. My cycle seems to be getting (markedly) shorter, which doesn't happen. Like, my big drop is turning to the platelet raise phase quicker, it seems. Will know more very soon. 

I did read recently that azathioprine is safer than cyclosporine, but otherwise... Cyclosporine is what I've been asking for, for more than four months, which included 2 other doctors previous to this one. 

My lymph % is 24. Yours is low, like you say, because of the azathioprine. I see my white blood cells have gone down due to  cyclosporine's immuno-suppression.

Well, I did add grapefruit juice, a little bit cautiously, and my cyclosporine trough number is still low at 44, when doctor was looking for between 200 and 400. But, my CTP cycle seems to be affected, so that is enough for me, at this point. 

The tracks in PolyTrack are often creatively designed with many challenging turns and diverse terrain, providing an experience that is never boring.

I've actually read that the trough number for cyclosporine, normally taken 12 hours after a dose will have a negligible increase after grapefruit juice. Its the peak that will go up by 185. So, I am asking for a peak test, 2 hours after dose.

Never mind. Platelets still dropping, so apparently cycle unchanged...

Well, here's the rub. The doctor refuses to do a peak test, controlling... Medical and insurance doesn't like patients to have too much freedom... Can't win when you have your own ideas. I want to adjust doses and they want to adjust doses... They spend 2 minutes thinking, and I'm supposed to go by what they think?

So, what I thought of as cycle shortening, was actually platelets dropping faster. So the opposite of good. I stopped the cyclosporine, but going against doctor, doesn't seem to make doctor happy. So yes, a forced second opinion could occur.

So drbean, has your doctor ever monitored your cyclosporine level? Mine has done the trough test, 12 hours after last dose. But it comes back low. I, personally would rather see the 2 or 3 hour after dose test, known as peak test. My doctor doesn't like this test for some reason. But it would tell what's going on better, I think. Well, simply, I think, the trough test only, could make you overdose, and the peak test only, could make you under-dose at the trough. I don't want to overdose, so hence me liking the peak test. 

Of course, I think I'm done with cyclosporine anyway, seeing the platelets go down quicker than usual. 

I was told about a doctor that was like the best they've known. And I ended up needing a new doctor because of an insurance change, so there you go. That was 3 months ago. So, he comes off as very reasonable and takes his time with you. But the reality has been more waiting around. And every 39 days I have another scary dip in my platelets while we're wasting time.

So, we finally get to second appointment, since nothing can get done without an appointment, perish the thought. So he's telling me his plans. Well, I'm glad to finally try cyclosporine, so I go with what he says. I see flaws in dosage and he's talking about trough tests, which I had not heard of, so yeah, in some ways it seemed like he knew what he was doing, so I didn't say anything. Unfortunately, nothing was laid out for other possible occurrences, such as platelets dropping quicker than usual. Who could predict, honestly? Anyway, when results are not right, he is adjusting off of the trough tests. Seemingly that's the only formula he cares about.

So he is willing to adjust, but not when it comes to me wanting to adjust. Its all chiseled in stone apparently in last appointment, and requires another discussion to go against anything he is doing. Any comments are ignored, and when I try to figure out what language he will respond to, again he says, wait for next appointment. 

This relationship is always going to be frustrating to me... Am I asking too much? Do doctors always waste time by not listening to the patient without another consuming appointment? And even when there is a new appointment, is he going to be all powerful? 

Cyclic thrombocytopenia is a very rare disorder. I feel I know my disorder better than someone else does. I have the time to do the math. The doctor is not a cyclic thrombocytopenia doctor. He is just guessing along with anyone. And he is not spending much time on this guessing game. 

Should I find someone willing to change things the way I want to change things after a note on a portal? Or does this doctor not exist?

I don't know if this "formality" is insurance related, protocol related, or doctor selfishness related, but its pretty insane to me that time is not considered for a platelet bleeding disorder, when things could theoretically happen very quickly. "Oh, can't do that" with no good excuse why "can't do that". "What do you want me to do, prescribe without an appointment?" Is that so crazy? The doctor and I both knew we were going to go with cyclosporine, but no, had to wait for appointment. Insane! Must have to do with money, somehow. Doctor wants appointments... Flawed system? Its never going to work efficiently at this rate. 

Is a tele-doctor actually the answer for me? No idea.

Itpjourney wrote: Hello Everyone! Sure its going to take a while before there is anyone here, since personally, I didn't receive an email that the forum can be written on now. Just happened to look. 

Well, a lot has happened personally for me!

Back in October 2025, I was having another dip in platelets. I noticed at the time that I had 9 cycles thus far Slope Game 2 , going from way under 10 to over 500, and often enough blood tests to see that the cycles may be about 39 days long. That unbelievably consistent cycle was the key for me.

So, my hematologist was telling me that I should get a platelet transfusion. I commented that I, honestly, had been thinking I might have CTP, cyclic thrombocytopenia. His only answer was that it is ITP and my choice of treatment would be Rituximab or Promacta. So obviously, he didn't see it as cyclic, but he never said why. I presume that it was because he was convinced that my papaya leaf extract self-treatment was raising it, but I had told him that the papaya leaf extract was powerless to stop the drop.

So his reaction or lack of one, forced me to a second hematologist, who had never heard of CTP. So, this hematologist gave me the benefit of the doubt and "forced" me to go through a cycle with no medication. I freaked out when the platelets got low next to Thanksgiving, but he held me to the no medication. I survived and that cycle, which went from under 10 to close to 300, was pretty much the proof that it was CTP, but things ended shortly after with that hematologist, due to insurance reasons, so I did not get a lot of words from him or a new diagnosis, or any suggestion of medication.

So Dr. number 3 now. He did have one mentor that had a patient that "maybe" had CTP. So we've gone through another medication-free cycle, from 1 or less, to 420. He wasn't up on medication with my first visit. I have suggested cyclosporine A potentially, but I have to get together at some point to discuss. He does say that the platelet trend is definitely cyclical. Didn't quite say I have CTP, but close enough. Seems, to be a hesitancy to put it into the words, "YOU Have CTP". 

So there you are. My suggestions of papaya leaf extract were at least somewhat wrong, and I'm sorry about that!  I haven't had any PLE since November 10th. It may have been pushing the count higher along with the cycle of thrombopoietin (TPO), but in this case, it may have not been "helping". (It would still be nice to know if PLE keeps me out of the dip somewhat, but its impossible to know that, since the numbers shoot up with the natural TPO cycling). 

So, one thing is more sure, I have a handle on what the cycle is doing. The dip is even more scary though. Last dip, I spent 8 days under 10, down to a count of 1 or less, and am feeling like I have to be careful with it more since I know I'm not taking medication. Still have avoided the hospital, since my symptoms are actually quite minimal.

Of course next thing, since the platelets are going so low, is trying a medication. That will be its own challenge, but many of you know how that goes. 

I don't know if I should start a new forum identity, or just point out every time that I have CTP and not ITP... Of course I can't just say CTP, I would have to say Cyclic Thrombocytopenia. ITP patients can go years before realizing that they have CTP. It is extremely rare, but it still needs to be known its a possibility, when you see fluctuations. Especially fluctuations when not taking TPO drugs. 

Thanks for sharing this, the clear cycle pattern you tracked is really valuable. It might help to keep a detailed log of counts and symptoms to support a formal CTP diagnosis and guide treatment decisions.