TOPIC:

Hi- I'm in my 30s, f, and new here. My platelet count had only been very low for less than 3 months. I don’t have the feeling enough tests have been made to be sure whether I really have ITP, while the doctor seems certain. Organs look okay on ultrasound and ekg, blood tests were okay other than my thrombocytes. I’d be interested in comments on the last weeks (bottom of the post) and I will definitely get at least one additional doctor’s opinion next week.

11/4/2019
Thrombocytes: 30000
- No treatment yet, drank papaya leaf extract and tea in the meantime, and more B12 pills (1000 micrograms)

12/18/2019
Thrombocytes: 13000
- Treatment: One infusion something with some cortisone first day, then 40mg Dexamethasone the next days
- No major side effects, somewhat drowsy, swollen face, hungry etc., what I expected.

12/20/2019
Thrombocytes: 68000
- Treatment: Prednisone 20mg daily
- 4 days diarrhea, pain, mainly headaches

1/3/20
Thrombocytes: 25000
- Treatment: 40mg Dexamethasone daily
- Neck kept swelling more, but not as sick as on Prednisone (or Dexamethasone withdrawal?)

1/6/20
Thrombocytes: 109000
- Treatment: Nplate, not sure what dose, assume 80 micrograms
- 1 day diarrhea, pain whole upper body, especially back and neck near the lymph glands

1/13/20
Thrombocytes: 120000
- Treatment: Nplate 160 micrograms
- 7 hours after shot severe pain in chest and arms, could barely breathe for about 3 hours. The next days I still had trouble breathing but not as badly. Fever on the 16th, light temperature the next days. On the 18th and 19th my whole upper lymph system hurt more severely, burning pain in my spine and sternum. Sternum seems swollen, neck is definitely still swollen. (Doctor & assistants say they’re not all side effects, even though they occurred at the same time and I thought I saw them listed as such.)

1/20/2020
- Thrombocytes:178000
- Treatment: I refused due to side effects and lack of better suggestion
- (Drank aloe, papaya leaf extract and tea, lots of pomegranate juice etc, B12 pills in the hope it would have at least a minor effect)

1/27/2020
Thrombocytes: 115000
- Feeling tired but almost no pain, only slightly at the sternum and spine
- No treatment again, Nplate was suggested, several times even though I already said no. It took forever to convince them to let me see a doctor when I was at the clinic, though I had called in before and they had agreed on letting me talk to the doctor.

They can usually diagnose ITP by looking at the blood film. In ITP there will be more large, new platelets than older smaller ones as the body kills them off too soon.

You may like to read the largest guidelines at ashpublications.org/bloodadvances/article/3/22/3780/428877/Updated-international-consensus-report-on-the

Nplate is supposed to be used to keep the platelets at a count of around 50 so you are right to be wary of continuing to use it with higher counts. All the new, large and sticky platelets that Nplate forces the bone marrow to produce can cause clotting when there are too many of them.

Also be careful of taking untested supplements. Aloe is a recognised laxative so maybe causing the diarrhoea. It's also carcinogenic according to reliable sources so you may want to rethink that.

Hi JJ,
Thanks, I don't know if my doctor has done any of the tests mentioned in the link you gave me. All I've seen was my platelet count and the meds he gave me. It looks to me like a bone marrow test doesn't need to be done at the moment, so I might cancel that since I'm not comfortable there anyway
I was at a different place in 2017, I had mild thrombocytopenia, 120000. I thought at the time it doesn't sound like a big problem and didn't follow up. But on their report it says something about my platelets not looking like ITP (and a few other things, TTP, Lupus etc). I'll go there next week to have the same test again.
Good info about Nplate, so if my platelet count becomes too low I might take a small dose. Though to me the intensity of the pain and my doctor never having heard about any of my side effects made me sceptical as to whether it's a good solution for me.
I wasn't taking any supplements while medicated, only before the treatment and now. I didn't know about aloe being carcinogenic.

So my 2 weeks no medication "experiment" brought me down to 40000 again. I felt it because I had itching rashes, slight nose bleeding, and small wounds from walking. So obviously those natural things I tried to raise my platelets either didn't work or only worked a little bit.
Tonight I'll start Eltrombopag. From what I read it works similarly to Romiplostim on which I had quite severe side effects. But at least it seems safer to be able to stop taking a pill that needs to be taken daily than a shot that I get weekly.
I rescheduled my bone marrow biopsy. I really don't want it to be done and from what I read it's not necessary for ITP, but I'm not sure I actually have ITP and I had such intense pain in my spine and sternum while on Nplate. And I still have a stabbing pain in my left chest, which is not as intense as it was anymore and I had an ekg done, normal... Still worries me.

I've had ITP since 1989 and I do not ever recall having "itching rashes" when my count dropped - not even below 11k. Are you sure that was ITP related and not due to one of the natural things you tried?

I've had ITP for nearly 6 years and never had an itchy rash either.
Eltrombopag and Romiplostim are slightly different in their mode of action. I never liked taking Romiplostim and much prefer Eltrombopag, however it can take at least couple of weeks to get going so please do not get disheartened if your count initially drops or stays the same.
Regarding the dietary restrictions attached to Eltrombopag I find eating my evening meal by 7pm and taking it at around 11pm the easiest way to manage it.

Hi MelA,
I'm not sure if the rashes are related to anything or not. However, they started long before I tried the natural things. A few years ago I've been told I had a low thrombocyte count, but only slightly, so I wasn't worried about it and didn't check that again until recently.
I was at a different doctor today who confirmed that they could do a few more tests, I felt they were communicating more clearly than the other clinic I went to, so I'm considering switching.

Hi Mrsb04, thanks for the feedback on Eltrombopag. That sounds encouraging and I also just got a blood test to be at least somewhat sure there's no high risk of thrombosis (because of the chest pain and trouble breathing I had). It sounds like taking it at night would be easiest as soon as I'm sure it works for me. I'm thinking about starting it during the day just in case I get side effects like I did from Romiplostim, so that somebody is awake to help me. I'm slightly tempted not to take anything at all because since yesterday my count stayed the same, but I'm guessing that one day might not tell me much at all as to whether it will drop again. & yeah maybe the rash isn't related, I don't know. Just another thing about which doctors can't tell me for sure yet what it is.

There are dietary restrictions with this drug. Basically no calcium foods including dairy within a certain number of hours of taking the drug which is why people take it at night. If you can manage that in the day then that's good.

Hi JJ,
Yes I think I can handle that. I rarely eat/drink dairy products anyway. Maybe the mineral water that I drank the first day had too much, I bought some with 12mg Calcium per liter now, that was the least I could find. Thanks for your help you all!

Hi ImPatient; just read your thread so I'm a little late to the party (so to speak)! I've had ITP for about 8 years and have been through just about all of the tests and many of the treatments, only to end up (benignly, thank God) on daily Promacta treatment, with platelet counts in the 60-90K. As for many of your questions about a definitive test or diagnosis, ITP is a diagnosis of exclusion so it will take time and a fair amount of uncertainty before you can be sure of the diagnosis. The good news is since you are less than 6 months in, there is a good chance it will be transitory and may have been temporarily caused by some blip in your immune system (like an extreme reaction to a food, chemical exposure etc.). As the others have said, some of the symptoms or side effects you have mentioned are not typical of ITP itself, and I personally have never had any side effects on Promacta (fingers crossed!) after at least 6 years on the drug. While that's not a certainty for everyone, most people I have spoken with have done well simply taking the pill.

Hope this helps some. Hang in there and give yourself some time to learn about the many paths that you may choose if it turns out that you do have chronic ITP.

Hi Luca,
Thanks for your input too! It gives me hope some of you have so much experience. Wow 6 years on Promacta and doing okay sounds quite good.

I ended up at the ER after 2 days of it, but I think it was to be expected, now I really know it takes a while to work fully. I hadn't realized how low my counts were until a different doctor who actually had nothing to do with this urged me to go, because he thought I didn't look good at all. So now I'm back on Dexamethasone and Eltrombopag. They say it's too risky to do further tests until my levels stabilize a bit.

Yes at least in its acute form I've only had it since November/December last year. Slightly low counts must've been years, but since they hadn't been a big problem I doubt they are of much importance.

Well I'm probably going to stick with Eltrombopag a few more weeks to see how it goes. So far I can't really say much about it. Maybe it will work for me too, if I need something longterm.

ImPatient. I think what the doctor is doing is giving you Dex when counts are too low and then Romiplostim/Eltrombopag to raise counts when Dex wears off. I don't think taking Dex periodically is the goal.

AFAIK, that counts go way up with the Dex/steroid treatments is good evidence that ITP is the problem. Same thing for IVIG treatment. Still, it seems many doctors like to see the bone marrow, not for ITP diagnoses, but before long term treatment with Romiplostim/Eltrombopag. Bone fibrosis/scarring is a possibility, though rare, with those.

When you noted a fever on Jan 16th, doesn't that strongly indicate having the Flu?

On pain in the left chest and also sternum and spine. Is it possible you cracked a rib while sneezing?

On itching and rash. Were the rashes the result of itching? There seems to be some evidence that Candida fungus of the body/skin may have something to do with ITP.

When I had a Dex pulse, I became very hoarse. When you mention neck pain, did you get hoarse along with that? One place the EBV can hide is in the tonsils.

A 109 count after 3 days of Dex sounds like a very nice steroid response. While Eltrombopag sounds fine, has the doctor mentioned Rituxan/Rituximab to you?

Hi Hal-

Good point about the bone marrow biopsy before longterm Eltrombopag/ Romiplostim. That makes sense to me, so I think I'll keep my appointment for it.

It's possible I had the flu, but it didn't feel like it. I had light temperature when I was on Dexamethasone this time again. I suppose it's becoming a bit clearer with experience. I think that the pain is Dexa withdrawal, because again I'm feeling like my whole upper body is bruised... except for the spine and sternum... that was either NPlate or something totally different.

The doctor said there are some treatments that may have more side effects and he doesn't want to try them on me unless Eltrombopag doesn't work.
Here are my recent counts:
Feb 7: 20000 -> 40mg Dexa + 25mg Revolade x 4 days
Feb 8: 37000, Feb 9: 68000, Feb 10: 117000
Only 25 mg Revolade Feb 11: 14300, Feb 13: 195000

Rashes- suddenly start itching and then kind of look like sunburnt skin. I've been to several doctors nobody knew what it is, they gave me cortisone for it.

Thanks again, the answers are really helpful.

I just got my test from another doctor back, it's a bigger one, they say it's definitely immune thrombocytopenia. Alright... I guess I'll keep looking for a new place, so I can get some rest while trying to figure this out.

Oh, another Dex pulse from a 20 count. Interesting, combining it with Nplate/Promacta. I can think of one person in the past who had a lot of problems with sky rocketing counts, followed by huge crashes, with this combination. It was an odd situation. Hema refused to prescribe Prednisone. Would only prescribe Dex. Could never get stable on Promacta alone. Had to get low dose Prednisone from her primary care physician to finally achieve a stable count on Promacta alone.

Anyhow. Hope the pulses do you well. As you may already know, the idea is for the baseline count to rise with each pulse.

Hi Hal-

I had 20mg Prednisone after my first Dexamethasone pulse and went from 68000 to 25000 within two weeks. I felt sick on it, though at this point I'm not sure whether it was the Dexamethasone withdrawal or actually Prednisone. I could suggest trying it in addition to Eltrombopag next time.
I had started Eltrombopag 2 days prior to my thrombocytes being at 20000 again. So I'm guessing they didn't want to stop it while on Dexamethasone as it needs a while to work.
Today my count was 131000. No problem, except on the 13th it was 195000, again 64000 less within a week.
I've been reading through a lot of the posts here, but I didn't see that the baseline count was supposed to rise. That's interesting, because that's not really what's happening right. In fact I don't even know what my baseline count would be, I immediately got Dexa when around 20 or 13, usually after a quite rapid drop.
So today my hematologist's assistant said again the bone marrow biopsy next week was necessary. Assistant at gp said I should talk to him again and switch doctors before I let them do anything unnecessary...

I'll translate a bit of what the hemostasiologist wrote, the person who did the bigger blood test recently. And then I will update once something new happens. At the time of the test I had stopped taking any medication for 2 weeks and my thrombocyte count was at 40000.

Immune thrombocytopenia with moderately restricted thrombocyte function
High sensitivy CRP 9.14 (normal less than 3)
Protein S 66%
Iron deficiency, ferritin 7.2 (normal 9-140)
B12 was on the lower end, but normal
Some increased coagulation factors as acute phase reaction (2, 5, aPTT, 8)
Thrombocyte aggregation decreased (lower epinephrine, collagen etc)
Some increased glycoproteins and granula functions
Increased Eosinophiles and basophiles
Increased fibrinogen
Everything else normal- leukocytes, lymphocytes, hemoglobin etc

Little update: Thrombocytes increased with only 25mg Eltrombopag. 104000 2/28 and 167000 3/4.
I switched doctors. The new doctor seems to know a lot more than the last one- on this specific topic at least. He gave me 3 talk appointments in one month and in addition to more blood tests. He asks me if I have any questions, explains things so I can understand them and doesn't push me into unnecessary treatments. I feel so relieved not having to deal with someone's assistant's illogical and careless comments and having to guess what I really need.
I'm so well at the moment that I'm applying for jobs again. But I'd actually prefer to go back to the U.S. or South Europe. Surely a new insurance doesn't want to pay such expensive meds for a preexisting condition?

A 131, 104, and a 167 count. Sounds like 25mg dose works well for you ImPatient. Note that a count less than 100 is preferred on these TPO-RA drugs because the risk of a clot goes up as counts go up.

Maybe counts will stabilize a bit more and you can drop the dose. Be aware though. Some folks can start having difficulty when skipping days enters into the pill taking equation. Splitting pills and make half strength doses to achieve a stable count can work better than skipping days.

Hi Hal- last week's count was around 120, so maybe it's still dropping. I'll get my blood checked tomorrow again, and I'll also get a bigger test back. My new doctor seems quite well informed, he just wasn't there last week. The last one almost never spoke to me and his assistants told me it was totally okay to have a normal or even high count on these meds. I'm glad you guys told me back then that it's not, because I already had had the feeling that something was wrong (trouble breathing and pain on Nplate with a count over 170 and they wanted to increase the dose regardless).
My Revolade package says I shouldn't cut the pills. I cut one once anyway, but it was difficult to cut it evenly and it looks different inside... maybe there are different kinds of Eltrombopag pills, some that can be cut and some that can't?
When my count was 167 two weeks ago I decided to eat a bit when taking the pills, thinking that may decrease their effect just a bit, so it would equal a lower dose (until the doctor is back to talk about whether the dose needs to be changed and how). I don't know if that is why it dropped to 120. Other than that I've been taking it in the morning on an empty stomach and ate nothing until two hours later. Works best for me so far as I'm not that hungry in the mornings and I feel safer, being able to reach out to somebody more easily in case of sudden side effects.

Counts do swing about even on Eltrombopag. Personally I don't want a count above 100 whilst taking it

I was at 121 today again. I'll keep taking 25mg the next two weeks and see what happens (unless I don't feel good before then).

ImPatient, some folks seem to do just fine with Promacta/Nplate and higher counts. Others do not. But... There is currently no way to predict who will and who will not have a clot with these drugs. If you were having headaches with it, then the threat is more obvious. In that case it would be wise to keep counts closer to 50 for sure - where one would expect the headaches to then go away.

LOL, no two ways about it. Cutting Promacta pills is a bit of an art. Yes they are all brown inside. I think the manufacturer doesn't recommend splitting because they just don't split well. IMHO, this is on purpose. On splitting they have a tendency to turn into brown dust a bit. My secrets. I have two (cheap) split'ers. I don't know why but one seems to work better then the other. I also put them in the refrigerator long before cutting to draw the moisture out of the pill. That will keep the dusting down.

Some folks do just fine skipping days to get the average dose lower. Others, skipping is not so good. mrsb04 and others can speak to this better than I. One can expect half'ing the dose to roughly half'ing one's counts. So if you start with a 120 count and half the dose then one can expect ones counts to be a bit less than half. Perhaps something like 40 to 50 range. Note, it takes a minimum of two weeks for any dose change to be reflected into one's counts.

Another option is to go two-thirds dose. That would be take 25 mg for two days and then skip one day. Then repeat. Two thirds of 120 is 80 so counts might be something like 60 to 70 range. Now you should see how the game is played and can realize other fractions are possible as well.

Ah okay, so you have experience cutting them. I thought maybe you had different pills or it was dangerous if the brownish stuff was exposed before being in ones stomach or something...
I didn't have headaches from it, but I still keep getting a stabbing pain in my chest and am short of breath sometimes. Not as badly as it was on NPlate. But on the package insert it says those may be signs of a clot, too. I think that I noticed this pain primarly on high counts, but then I had similar pain when I received a vaccine last year... I'll keep observing it. I have my next blood count next week. If it's over 100 I'll have a brief talk with the doctor.
However, then problem is, I get really tired on even higher low counts, I don't know how people work or think clearly like this... maybe it's due to something else. My B12 is finally high again, but my ferritin is still a bit on the low side, though not too low.

IMPatient, your best bet is to talk to your doctor. None of us on here know what's best for you. If it is not recommended to split pills, then you shouldn't, at least not without talking to your doctor.

I don't agree that halving dose will necessarily halve platelet count. It may well drop but not by 50%.
As for splitting pills my haemo is fine with that. 14 months ago when I owned up to taking 1.5 x 25mg tabs a day for the previous 8 weeks without telling her she was fine about it and prescribed exactly that. Pharmacy even supplied me with a new pill cutter.
Unfortunately I then endured a tremendously stressful time with my 90 year old dad having a stroke and having to help him rehabilitate and adjust to a new way of life which resulted in a crash down to 8 so my dose was increased back to 50mg/day. Now I'm on 75mg a day as another crash in November with an URTI dropped them to 7 and 50mg not bringing them back up. Last week they were at 69. Retest in 4 weeks. If over 100 I will be going to 62.5mg/day doing 1x50mg and 0.5 x25mg.

Hi Cindy,
Of course, forums are to get ideas, not prescriptions. Once some forum members here did know more than my last doctor. As a consequence, I asked for a second and third opinion of other doctors, switched doctors and changed treatment. (When I was having severe pain on NPlate and the doctor told his assistants to double my dose while my count was already approximately 170. Also, it turned out in my case at this point there's no good reason to have a bone marrow biopsy, so now I have a doctor who's not pushing me into it.)

Hi Mrsb04- I'm sorry to read you're experiencing these crashes. Mine seem to crash due to stress as well, but I haven't had a major crash on medication except when I stopped. Maybe I just haven't had enough stress since then, but I don't think so. I figured in case I decide to change my dose, I should get tested weekly or at least when I don't feel good. My counts have never been stable since I got diagnosed, except for the last couple weeks and that may have been coincidence.

Know someone on nplate and she gets horrible headaches the day she get it - but it is the only way she can keep her count safe so she endures Mondays.

Seriously I would not cut in 1/2 a pill that sounds like that - get it from the horse's mouth [doctor or pharmacist] before doing so. There is usually a reason some meds say: Do not crush or cut. There are people here who feel they know everything & have their theories and like to say do this or that when they really don't know. Just saying...

Regarding your chest pain and shortness of breath - have you talked to your PCP/main physician about that?

I experimented cutting mine to see if counts would be more stable than 25mg/50mg on alternate days which they were. I was surprised as Eltrombopag has a long half life.
One has to use a proper pill cutter to ensure tablets are halved then I wrapped the remaining half tightly in cling film then foil to stop it being exposed to air or moisture. The pharmacist told me that was the correct thing to do.