Return of Low Plateletes

In March of 2017 I was admitted to the hospital with a platelet count of 3. Some petechiae, blood blisters in mouth, some bruising but not a lot. I was given two days of IVIG and then prednisone taper for three months. My counts have been good since then (above 120) until recently. Two weeks ago I noticed some petechiae and blood blisters. Got a blood draw and counts were down to 1. My new hematologist gave me a one day IVIG course and a four day high dose (40mg/day) dexamethasone treatment.) Three days after IVIG I was at 154.

Went on a trip and on the last night noticed some blood blisters. Started a new dexamethasone pulse the following morning and am now on day two of the pulse. Platelets were checked today and they were at 6. I still have two more days of the steroid pulse but I'm worried.

I have no real signs of bleeding (some blood in mucus and sputum) so I know there's probably no imminent danger, but I'm freaking out.

Are you freaking out because of the count? Symptoms matter more. You are treating and it's possible that counts will be higher by the time you wake up tomorrow morning.

It's hard to know if you respond to IVIG or steroids since you had both at the same time the first two times. I guess you'll find out within the next few days. You might want to talk to your doctor about other treatment options. It's not a good idea to keep doing this plan over and over.

I guess just the counts. My symptoms are pretty minor but with counts this low how do I not worry about spontaneous internal bleeding? Is that even a concern? My hematologist hasn't rushed me to the hospital or anythjng.

I'm reading my options. I'm not keen on a splenectomy or taking rituximab (risk of death.) The TPO treatments seem promising.

Yes, read about the options so you are prepared when you speak to him. If you decide to go with the TPO's, be sure that he has experience with them. Some doctors do not but pretend that they do and don't follow protocol.

Spontaneous bleeding is a risk, but it is rare. Some people can handle low counts with few symptoms. You'd want to watch out for symptoms of a stroke...sudden headache, nausea, vomiting, loss of use of one side of the body, etc. Many of us have been where you are though and have been fine. I wasn't hospitalized with counts of 3k either.

Taking Vitamin C can strengthen blood vessels and help with symptoms.

I'm planning to add Vitamin C, Multivitamin, and a probiotic. My hematologist I think is a proponent of splenectomy but I really feel TPOs are the better first try option. Hopefully she, or one of her colleges, has more experience with TPO dosage.

Counts are still down, at 2000 today. Hematologist is going to start me on 50mg of promacta to see if it works.

Still scared since there's some blood in my nose and mucous, but no real signs of bleeding.

Are you on any steroids along with the Promacta? I usually respond to Promacta within 5 days to a week, some people it takes longer. I respond to prednisone so I have taken a low dose (10mg) until the Promacta kicks in, then taper the pred. Also just my experience, everyone is different- I usually have some side effects when first starting Promacta but then they go away. Promacta is a heck of a lot easier to tolerate than dexameth- just my opinion! 50mg is the proper starting dose. Try not to worry, your hemo seems to know what shes doing. Nice she isn't pushing splenectomy. Good luck! hope it works for you.

Eltrombopag (Promacta) can take a while to get going. I take mine at midnight as that makes it easier to follow the 4 hour no calcium either side of tablet rule. Please make sure you get a liver function blood test before you start it then monthly whilst you are on it.

Platelets are up to 53 today. Met with my hematologist today. She still considers splenectomy to be the gold standard but said if I'm happy on Promacta she has no problem keeping me here. Now to see if I can afford it.

The gold standard? Maybe in 1965.....

How old is your haemo. Splenectomy as a gold standard is, as Sandi says, a very old fashioned idea.

She's mid 50s. I agree I think splenectomy is old fashioned but there are recent papers reaffirming the efficacy. However I strongly prefer the TPOs. The issue, at least as someone in the US, is affording the drugs. The listed price for a month of 50mg promacta is $8000. My insurance I believe only covers 80% so that's still $1600 a month. Hopefully patient assistance can help.

I think she partially is in favor of splenectomy just due to the cost of TPOs. (which is a garbage reason, but America...)

FTW - Sandi almost drowned my keboard when I read your reply :gold standard... in 1965

Thank you and all the other veteran forum users, you have helped educate me more on this forum then what I've learned from my doctor.

Well so far it seems my current insurance will cover Promacta. That's good. Just got blood work today; all liver functions in normal range, platelets at 168,000. Seems to be a good drug for me.

Woah! That is some serious response. I'm glad to hear that you are seeing some improvements with the Promacta. That count is definitely high though. Hopefully it will go down some at the time of your next bloodwork. If it doesn't, maybe you'll be one of the lucky ones who gets to decrease your dosage quite a bit and still maintain a good count!

Keep us posted.

Yes, thats a high count but a great early response! Target for Promacta is 50K, not normal numbers as the risk of blood clots goes up when counts are over 100. That said, its a really good response and if you can cut the dose to 25mg or lower, it really saves money! Plus you may not always be on it, some people lower the dose over time until they achieve remission. But with splenectomy theres no going back! What bothers me about splenectomy is how doctors act like its not a big deal at all- like no problem, just live perfectly fine without a spleen. I've had 5 doctors over the years push splenectomy and only one of them mentioned anything about higher risks of blood clots and infections. Plus I've read that many people have to take low dose antibiotics, or take antibiotics for every cold, sore throat- that can't be good either. Sorry don't have links, just bits of info here and there. I've also read that the spleen supports the pancreas- there isn't much written about it so again no links- but I believe that the spleen does more than scientists know.
Here is some info about the how risk of pancreatitis is higher after splenectomy- www.ncbi.nlm.nih.gov/pmc/articles/PMC5008969/

lurpelis wrote: Well so far it seems my current insurance will cover Promacta. That's good. Just got blood work today; all liver functions in normal range, platelets at 168,000. Seems to be a good drug for me.

If I'm reading your history correctly, you've got a good IVIG response and failed with Dex. Ha, sounds like me. For reference, I was 193 after 11 days on 50mg Promacta. Ended up, I do well with 12.5mg.

Sounds like you're headed to somewhere between 12.5 and 25mg dose. Good luck...

Everything seems pretty good with the Promacta. Currently at 25mg/day and my platelets are at 202. Not sure if hemo will want me to try a lower dose or every other day or what. Novartis approved me for assistance so I'm good for a year! :laugh:

That's great! I think I'd want to try a lower dose though!

If my count was that high I'd be lowering my dose. Far too many sticky new platelets for my liking.
I note US protocol is reduce dose for counts above 200 where as UK protocol is reduce dose if count is above 150.

lurpelis wrote: ... Currently at 25mg/day and my platelets are at 202. Not sure if hemo will want me to try a lower dose or every other day or what...

lurpelis, your case is a bit odd and reminds me of 'jayinchicago'. Part of my interpretation problem is that both of you have never taken IVIG by itself. Now, the 202 count seems high for a row 3 response, like I have. I wonder about the possibility of a partial remission like Jay has. Something you might want to try out - that counts might want to hover in the 40 to 60 range as the dose of Promacta is progressively lowered. Also, not just a multi-vitamin but a B-complex vitamin specifically may be good. Just a guess.