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?

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

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

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.

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. 

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.

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".

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.

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.

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.

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 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.

My platelet count from Jul 24 to Feb 26 are as follows;
15 Jul 24 - 184
16 Sep 24 - 153
16 Dec 24 - 157
7 Apr 25 - 183
14 Jul 25 - 167
3 Nov 25 - 167
12 Feb 26 - 177

The combination of medical treatment starting from 23 Feb 2026

a. Cyclosporine A - 75 mg daily (am: 50 mg, pm: 25 mg)
b. Azathioprine - 50 mg
c. Folic acid - 5 mg daily
d. Famotidine - 20 mg daily
e. Acyclovir - 800 mg daily (am: 400 mg, pm: 400 mg)

Seems like you're doing well, but not out of the woods, so if elderberry is anti-platelet, then no.

I’m a 70-yr old woman that was diagnosed with ITP 2 years ago. Had four Ritumax infusions in February 2024. Platelets now fluctuate between 60 to 90 now. Is it safe to take Black Elderberry 3000 mg capsules - 1per day?

I knew I mentioned CTP somewhere. And how its not something you necessarily want. Well, I have it afterall. I thought my fluctuations were papaya leaf extract-induced, and so did my doctor at the time, but no. After my own attention, and proving it a couple of cycles with no medication, there it was, hiding. Its very predictable and way too low in the dips, Cyclic Thrombocytopenia.

You are correct, my bad. My father got COPD and asthma from smoking! He did quit but he was allergic to wheat and dairy as am I so he had constant coughing. Removing wheat and dairy was an undeniable change that was so nice. I'm also doing it as I am allergic to both sadly. Why is it the best tasting food is forbidden or I will pay the price in symptoms. Anyway I'm still doing the vitamin c daily uptake of 1 cup of strawberries. It gives me RDA for "c" and I also get some from all the veggies I eat. Still hovering in 50's but check in with hema isn't until 2027 unless something comes up so it's a nice break from the six month check ins. All the good health to you in this new year.

Hi, thanks. No, cyclic thrombocytopenia is not seasonally cyclic, although the highs and lows could be influenced by the seasons possibly. My cycle is 39 days long. It is not affected by the environment at all, as far as cycle length. You can set your calendar to it. Basically 17 days to go from dip to peak and 22 days from peak to dip. 39 days. The body knows the platelets are going down and turns on the thrombopoietin (TPO). So the overwhelming TPO sends the platelets way up until the immune system does its thing, perhaps for survival, since enough is enough,  and brings the platelets down again to extremely low. Endless cycle unless it somehow stops. Last cycle dip I spent about 8 days between 1 and 10. I expect I will try cyclosporine A, but my doctor insists on a conversation first, and we haven't had it yet, unfortunately. 

Hi, and thanks for sharing. Yes, for sure, I had massive brain fog and it was in many ways the worst part of ITP for me.

That said, and I don't know any more about your situation than you shared, but your ITP being cyclic just screams 'environmental issue to me'.

Have you thought about graphing when you're up and when you're down and comparing it the time of year? That's basically what I did. I'm not suggesting you situation is mold or HVAC related necessarily, but it could be a seasonal allergy that triggers you, or maybe a food that is only available in part of the year, or any stimulus that isn't consistent across the year.

No, there doesn't seem to be a big curiosity on the effects of mold. It doesn't seem to be widely thought that there is any environmental concern that, when taken away, would end ITP. 

I actually, for myself, have determined, on my own, that I have Cyclic Thrombocytopenia. Interestingly, a person taking annual blood tests might miss having this. Only half the time will a person see lower than normal platelet counts. 

When I had 9 straight cycles, I mistakenly thought that the papaya leaf extract that I was taking was raising my platelets each time, even though I knew I seemed to be powerless to the decline, until the body was ready to fix it. Until I saw the potential for a 39 day cycle, I was surprised each time that it happened. I am on doctor number 3, and due to my research on a rare disease/disorder, I have been superior to all 3 in a heads up on what to do with this. 

If they don't seem to know about CTP, then they don't really understand ITP, in my opinion. They are not ready for the challenges of even ITP due to not spending much time with the disorder. Supposedly less than 100 patients have truly been diagnosed with CTP, mostly women. I'm male, by the way. Of course, given the resistance to a diagnosis of CTP, I can see why the number could be a lot lower than it should be. But, I'm sure it is truly rare, or at least pretty sure...

Anyway, just showing you another side of being your own doctor/advocate. My journey has actually avoided the expensive treatments thus far, except for the initial hospital stay when I was blind-sided. Sure, it would be nice to have the topping off of platelet infusions... That's one way to do it, and I agree that that may help with the brain fog. Of course in your situation, the mold (may have) caused (some of) the brain fog, too, right?

Hey all, I hope this finds you well. I had no idea that it's been almost five years since I last checked in, so I thought I'd share an update and ask everyone how they're doing?

My platelets have been stable over 150K the entire time since 2013. I do a regular CBC once a year with my physical, sometime more often if I'm trying to have something evaluated, but otherwise I don't think about ITP anymore, which is something I couldn't have imagined saying in 2012. I am eternally grateful that I was able to solve my issue and I'm equally grateful for all of the help from people who shared on this forum.

If anyone I've interacted with in the past would like to share their update I'd welcome it and I wish you well.

Also, as I haven't followed ITP advances closely, I would like to ask if there has been an increase in the consideration of mold as a proximate cause or if there remains no curiosity on that subject.

Many thanks, Keith 

• Rare Adverse Effects: In one reported case, a 43-year-old man experienced elevated liver enzymes (not necessarily specifically bilirubin) while taking papaya leaf extract, which suggested a possible, though rare, instance of herb-induced liver injury.

        Papaya leaf extract normally helps the liver and goes the other way, but I did find the above. Anything is possible.                Guess maybe lay off the papaya leaf extract for a bit...

        Your son has low red blood cells and low hemoglobin?

        You're used to the cortico-steroids. Another med is rituximab for when immune system attacks red            blood cells,          apparently.

        No sign of gall stones, right?

        

        

Yes my son’s haematologist was unhappy when we asked for suggestions on using papaya leaf extract

Update: my son’s platelet counts have gone up to normal, but his unconjugated bilirubin counts 4 times more than normal, his eyes and skin are yellowish, his gastroenterologist doesn’t know what’s causing it other than saying could be because of haemolytic. Any thoughts guys?

Not sure how accurate, but I have given myself projected peaks and projected nadirs (since blood tests have not always been at the right time), and going by these numbers; when I have used papaya leaf extract my peaks have been 10% higher, and my dips (nadirs) have been 100% higher (from 4 to 8, so by my numbers, it does look like papaya leaf extract could be helping with my basement numbers. Of course projections of peaks and valleys, when the blood test is sometimes 10 days from the actual, is going to be suspect.

Back to papaya leaf extract, pill twice a day during end of dip, after 3 months of not taking. Just had a pretty big platelet drop (420 to 48 in 11 days), and the cycle of CTP has been proven twice without medication, so won't hurt to try to keep count out of the basement.

For the past three years, we have been managing with Prednisolone steroids each time he had ITP and his platelet count increases after five days of steroids and we would stop the meds as per Haematologist. As you know steroids are not very nice so trying to see how we could use Papaya Leaf Extract instead of steroids.

My best wishes to you and your son. And you genuinely don't have to be afraid of papaya leaf--not because it is "natural", simply because it is an extremely benign plant (unless you have a latex allergy!)

Thank you ever so much for your support, appreciate it!