Just Diagnosed

I was admitted to the ER with count of 4K, had some bleeding in the inside cheek and petechiae on legs and arm. I had leg pain especially between my knees and ankles, even my toes ached.

The ER started me on a bag of platelets and the attending called in the Hemotologist. He diganosed ITP and stated me on 40MG of Dexamethasone and 25mg of IvIg intrevenous. He said that he would have not prescribed the bag of platelets since my body was only going to destroy them. I was admitted to the hospital and my counts when up to 7K in about 5 hrs. They gave me another bag of platelets during the early morning and my count went to 25K. The next day my count dropped back to 22K and I was given the second does of Dexamethasone. The following day my count moved up tp 33K. After 4 does of Dexamethasone, my count is 53K and I was released from the hospital. THis was yesterday. I have an appointment with the Hemotologist tomorrow to check my levels. I am scared and anxious about the readings and praying that they have risen.

Should I expect to see a rise or will the counts fall? If they fall what is the next step? Is it more Dexamethasone? I am 44 years old father of two young children in whose lives I want to remain for a long time. I am trying to understand if this could be a reaction to Niacin 500mg that I stated about 10 weeks ago. My last checkup which was in April this year showed a count of 181K.

Any advise would be appreciated. Finding this group has been comforting.


Thanks,

Paul S.

Paul welcome to the board. Your hemo will probably go over this but make sure you mention the Niacin. Low platelets is a known side effect of Niacin. They may have you stop taking that drug or recommend another to see if your platelet count improves. Hemo will definately want to rule other know causes before deciding your bodys immune system is destroying your platelets. Hopefilly the the Niacin is the cause. Keep us posted, take care.

Hello Paul Glad you found us! The platelet transfusion is "standard" procedure when your that low but like you said, your body just eats them right up. I've had like 8 of them and I'm tired of it! If my counts go down again I'm going to refuse them. Steriods are the most common first treatment. I don't know for sure but I'm thinking that's why your counts are up, that and the ivig. Are you still one the steriods? For a lot of people it keeps their counts up nicely. One thing you gotta to remember about this ITP ride, is there is no way to be able to expect anything! Nothing at all! There are stories from being at a count of lower than 10 with no symptoms at all to being 50+ and having bleeding. One thing about your story that caught my eye was the leg pain. I have severe leg pain from my knees to even my toes! I attribute it to being a waitress, being on my feet so long but now that I think about it it didn't go away completly even for the 2 months I was off work when I was first diagnoised. Do you have any other health issues that would explain the leg/foot pain? Or are you on your feel for extended periods of time?
No need to be scared and anxious about your numbers tomorrow. Either way, your still you! I'll be praying with you for higher numbers though.

Within two days of being in the hospital my leg pain was almost 70% gone. Only health issue is high cholesterol and acid reflux.

I have not had any recent cold/flu. Thank you for your prayers.

Hi Paul - I'm glad you found us.

Platelet transfusions are not generally used for ITP - the hemo was right. They can cause more harm than good and should only be used in emergency situations where there is bleeding or for a surgery.

As for what you can expect....that differs for everyone. Dexamethasone is a powerful steroid and I don't think you got a very good response. Because of the side effects, it wouldn't be wise to continue with that drug for the little rise that you got. Hopefully, your hemo recognizes that. There are quite a few "next steps" and the next one will depend on what your hemo feels is best for you.

You will be around for a long time. ITP is rarely fatal, even at low numbers. Most people tolerate low counts pretty well without serious bleeding.

Leg pain isn't a common thing with ITP - I don't know what that was about.

Good luck tomorrow and let us know how it goes.

Hi Sandi,

The blood test at my hemo appointment showed that my levels crashed back to 2K. I was readmitted to the hospital and stated on prednisone and IvIg. The dosage of prednisone (1g /kg). I got a small amount of IvIg over 3 hrs and the doctor is planning to increase this over the next three days. Today the count was 6K which is critically low. No more dexamethasone.
I am disappointed that the levels moved down to 2k. What is happening with my body? How do the levels respond to prednisone?
I am already getting a frustrated and this is only the first week.
Any comments/suggestions are greatly appreciated.
BTW, I did not seem to have any active bleeding or new bruises (except where I was stuck) this time around. I did notice that my legs stated to ache a bit, but not like before.


Thank you,

Paul.

Welcome Paul,

It's good that you found the forum. There are so many wonderful people here who will be able to help you along your ITP journey! Re the leg pain I also had pains in the back of my calves before my diagnosis and have struggled with pain in my feet even my toes hurt sometimes. But I notice that you're on cholesterol meds often these cause side effects of pain in the leg muscles. So maybe a change in cholesterol medication may help your situation.

Everyone responds to Prednisone differently. Some get a great response and some get no response. Hopefully, between both IVIG and Prednisone, you'll get a rise.

Most of us have been at numbers where you are now, and most of us have eventually found the treatment that works. Hang in there. I know it's frustrating, but you'll get there.

Fourth day in hospital. IvIg 25gm daily on third dose. 60Mg Prednisone daily. Numbers have moved from 2 to 6 then to 13 and then only to 15 this morning.
Little depressed about the slow rise, but trying to stay positive.
Dr. ordered a 4th dose of IvIg.

I read on the site that low platelet production is sometimes the cause? Is this widely reported or is it more that they are just being destroyed?

Always glad to hear comments or advise.

Thanks,

Paul.

The platelet production aspect just came to light a few years ago, and there are still doctors who are not aware of this. For years, ITP was thought to be a destruction only problem; hence the treatments that hindered destruction. There are treatments now that aid platelet production such as N-Plate and Promacta.

Also, bone marrow biopsies do not prove that there is adequate production, contrary to popular belief.

Also, bone marrow biopsies do not prove that there is adequate production, contrary to popular belief.

I didnt' know that Sandi. Is there any test that will do that definatevly?

Yes, but it is not performed routinely, probably due to the fact that it's a difficult, lengthy, and most likely expensive test to perform. As far as I know, it's only done for study purposes now. It's probably just easier to find out if the patient responds to meds rather than to find out why they don't. A good percentage of people with ITP are suspected to have production problems as well as destruction, so if a person does not respond easily to first line treatments, it could be assumed that there are production problems as well. Many of us have had the platelet antibody tests and having that knowledge has not helped with treatment decisions, so knowing whether or not there are production problems may not make a difference either. They'd still move down the treatment line as they do now.

That's my theory. If I'm wrong, someone please correct me. The article below sheds some light on it.

bloodjournal.hematologylibrary.org/cgi/content/full/103/4/1364

Out of hospital, counts were 55 today and when the last dose of IvIg was finished they released me. Tomorrow is the critical day to see if I can maintain. Still on 60Mg of Prednisone for tomorrow until they see what the levels look like.
Praying for an upward trend….
Paul.

All the best tomorrow Paul!

Last Thursday my count was up to 108. Very happy and greatful. Praying that it continues to rise.

Dr. reduced the Pred. to 40mg daily from 60mg.

Next test is Wednesday.

Optimistic about higher count... Keeping a positive attitude.

Levels fell from 108 last Thursday to 48 today (Wednesday). Doc is going to keep me on the 40mg of Prednisone until next Wednesday and if I can’t maintain these levels he wants to stat Rituxan.

I don’t know what else to do, I just know that I don’t want my spleen removed.

Should he consider keeping me on the Pred longer and even go back up to 60mg?

What is the success rate on Rituxan?

Feeling pretty low right now….

Sorry to hear that your counts fell, they are still a safe range though. You have many more options yet before spleen removal is even considered, in my opinion anyway! Rituxan works for quite a few of us. I had it. Only a slight reaction to first infusion and smooth sailing from there. It's keeping my counts in a safe range as well. I was on NPlate at the same time so I think the 288 reading I had was from that though. I've been hovering around 30ish to 70ish since treatment. For some it keeps their numbers up for a very long time, and there are some where it doesn't work at all! Just never can tell with this "silly" disorder.

Paul:

In my opinion, you aren't getting a good enough response to Prednisone to stay on it. Of course you'll have to taper, but a good response would have you at about 200+ and maintaining. The side effects are not worth it.

Rituxan has a pretty good response rate. There are those that do not respond, but a good many do. It also has a pretty good remission rate.

Sandi,

I am concerned that levels drop too low by next weeks' CBC. Do you think that I should get a second opinion on treatment?

This board has been very informative and I am greateful to all the contributors for sharing.

Thanks,

Paul.

Hi Paul,
I hope you get good news on your platelets next week, but if you don't, many on the board have had Rituxan work successfully. I think the success rate is 60% or higher? I am hoping to be one of them, because I really don't like being on Prednisone (I feel like I am wearing a fat suit, among other lovely side effects), and the Pred has not done a lot for my platelets. As for the Rituxan, I have not had any side effects and the infusions were easy.

One thing I really don't like about ITP is having to make decisions so quickly! I always want to go home and think about things, do my own research, maybe come back in 6 weeks or so... yet it seems like we are always in crisis mode, or close to it. Frustrating.

Wishing you all the best,
Sarah

Hi Sarah,

It does seem like I am in crisis mode living from one CBC to the next. Explaining to my kids why sometimes a medicine works and sometimes it dosen't is difficult when they have been taught that when you take the meds you get better.

Praying you see great counts with Rituxan..

Thanks,

Paul

Paul:

Second opinions never hurt. Different doctors do different things. The only thing is that you have to remember that there are only so many treatments and a different doctor won't make it go away. You can achieve remission which may or may not last. Your current doctor does seem to be doing the normal things at the moment.

I know you don't want to drop too low, but you are still on a decent dose of Prednisone at the moment with safe counts. Sometimes with ITP, you have to keep your goal at safe counts, not necessarily normal counts. That thought takes some getting used to.

Last count was 6K, back in hospital, on IvIg and an IV steroid. My hematologist is discussing the options with me and has mentioned that Rituxin is not an approved ITP treatment and causes some insurance companies to deny it as a treatment option. Also discussed splenectomy which I really don’t want to do until I first try Rituxin… Prednisone has not keep the counts stable….

Should I be correct in trying Rituxin or with such low counts just do the splenectomy?

Or is there something else like antibiotics in case there was infection that was being missed?

Any suggestions are deeply appreciated…
Thanks,
Paul

Hi Paul. I can't remember if you've ever mentioned how long you've been diagnosed, but a splenectomy should be a last resort unless you have other issues going on. I waited 2 years before having mine. I just finished my four treatments of Rituxan in October. So far, so good. I say, go for the Rituxan.

Good luck.

Hi Cindy,

Diagonsed about 1 month ago. Dr. says that I am refractory to steriods and he feels the higher dosage has too many complications.

Looks like we will give Rituxan a try. If you don't mind me asking, did your insurance pick up the cost of the RItuxan?

Thank you for your post

Paul.

Paul - most insurance companies do pay, sometimes you have to appeal though. Rituxan can take 4 to 12 weeks to work.

In my case, the hospital where I got the treatment paid for it. My doc used it on someone with a problem worse than mine, so he fought to get it for me and another girl with ITP. So far, it has kept my counts up. I'll find out this coming Sunday if they're still up.

Hi Paul and the others, Im not sure, I may have missed it but a drug that I have never heard mentioned on here but is being used on my son (Unsuccessfully mind you) Is Cellcept, otherwise known as Mycophenalate. Its an immunosuppression drug. Is that an option for Paul? My son is tapering pred and they doubled the Cellcept in hopes that it will kick in its not going to now, but we're still trying to get him off the pred. Just a thought for options.

CellCept has been used by a few with ITP, although not very often. It can take time to work, but can be effective.

Paul - sorry you're going through this. It's really difficult and scary at the beginning but it will get better. Try not to panic. I really think stress (and worry) make things worse. Keep your spleen for now if you can. Some people go into remission after a while. Everyone is different and you really can't predict how it will go but if your counts go under 10K you are right to be treating. Get rest and stay positive.