Where to go from here

Hi everyone. I was diagnosed with ITP the week before Thanksgiving. At first, I responded moderately well to Iv - ig, never at all to prednisone. Now, iv - ig does very little. I finished my fourth round of rituxan last week and have been taking antibiotics for h. Pylori for a week with no improvements in counts from those treatments. I have also received two smaller doses of nplate.

I just received immunizations for a possible splendectomy today, as my hematologist is becoming convinced that it is going to be necessary. I'm very concerned about the possible complications of both the surgery and potentially living the next 50 years without my spleen (only 29).

Wondering if there is any other way to go with this. I really want to get back to semi-normal life, so it's tough to stay positive and keep fighting to keep my spleen, especially as stubborn as my case has been.

Thank you,
- - - Adam - - -

Adam:

You didn't say how your counts and symptoms are. That's important.

IVIG is almost always temporary, so unless you want to spend a lot of time getting those infusions, count that out. It's a good rescue treatment, but not so good for long term.

Rituxan can take time....usually 4 to 12 weeks after the first infusion. Don't give up on that yet. There have been some studies lately that show that Rituxan + Decadron can give very good results for remissions. It's too bad you didn't go that route; you may have seen some results by now. I haven't seen many Hemos doing that with people here. I don't think the word has gotten out much about that.

bloodjournal.hematologylibrary.org/content/early/2013/01/04/blood-2012-09-455691.abstract?papetoc

Vaccines within 6 months of Rituxan have been shown to be ineffective, so you might want to hold off on the splenectomy for a while. It's good that you are questioning things. Splenectomy is rarely ever necessary for ITP.

If you received vaccinations within six months of receiving rituximab (Rituxan®), they were probably ineffective. In a new study, people who received pneumonia and flu vaccines six months after their rituximab treatments had a significantly lower response to these vaccines than the placebo group. Nearly 20% did not respond to the vaccines at all. Rituximab depletes B-cells (cells that make antibodies) and also reduces cellular immunity (the part of the immune system that doesn’t include antibodies), both needed for a healthy immune system. This cellular depletion lasts at least six months and has implications for the lack of response to vaccinations and the increased risk of infection seen in rituximab patients.

Nazi I et al. “The effect of rituximab on vaccine responses in patients with immune thrombocytopenia.” Blood. 2013 Jul 12.

www.ncbi.nlm.nih.gov/pubmed/23851398

You still have several options, N-Plate being one of them. Life will become semi-normal to normal soon, I promise. It's always toughest at first.

Hello Adam.
Though I do not have nearly the wealth of knowledge that Sandi does, I felt the need to add my 2 cents. You haven't had ITP for nearly long enough to even consider splenectomy. Your doctor is a doctor for a reason, but ultimately it is your decision. Don't feel you have to rush into anything you aren't comfortable doing.

Hey Adam, Dont give up on your spleen just yet! I went through two years of disappointments and felt as if I wouldnt respond to anything! My doctor had to taper me off nplate and steriods at the same point as my fourth week of rituxun I saw improvement after my last week so don't give up yet!! My counts have been stable for a year now!! Ill keep my fingers crossed for the both of us!

Thanks for the support everyone. Usually no petichiae as long as I'm above 10. Bruise fairly easily, and most take quite a while to heal count has been less than 10 usually for the past 3 weeks. The only exception was a day after receiving platelets I was up to 16. Was at 9 Monday, and have my next cbc today, so wish me luck

Good luck - let us know!

I was under 10 the entire month that I was having Rituxan. On week four, I went from 3k to 150k. It can happen that fast. Some people do not get 'normal' counts from Rituxan, but they can achieve and maintain counts that are at least above treatment level (20k to 30k). Some people seem to get no response at all, but it's still too soon to tell in your case.

Eventually, most people do find something that keeps their counts in a safe range. It can take time and patience. Two months is not very long.

Yep...I'll just echo the above. Many treatments take weeks to kick in. Two months is a short time.
Far too short a time to be considering an irreversible surgery that was state-of-the-art for ITP over 100 years ago.
A whole lot has changed in the past 100 years.

Have you tried a quick boost using something like Dexamethasone ?
I use it as a 'rescue treatment' now and then. For me, I get from 4k to over 50k in a day or two.
It's nasty and doesn't last more than a few days for me, but it's good for a boost at least.

Many of us live just fine with low counts, if symptoms permit. I'm at 16k (as of last week).
Scary at first, but there is no need to rush into cutting out a body part with no guarantee of success, unless perhaps you are bleeding out of your eyeballs nonstop.
Get to know your ITP. Learning how it affects you is one key to relaxing with it.
I still haven't made friends with my ITP (after 11 years), but at least now we are civil to each other.

.

Down to 4 today... So even nplate isn't working yet. You say that many are able to live with low numbers, but I'm wondering how to get this all to work with my job as well. I've only been cleared to work one week through the whole thing, after my initial full dose of iv
- ig and I'm worried that my numbers won't get to a high enough level to return

Many doctors give up on treatments far too quickly. For example protocol says to stop steroids (Prednisone) in non-responders after 4 weeks. With Nplate, each week the dose is increased until either the count responds or the highest dose, the 10th dose is reached. So nobody can say it didn't work for at least 10 weeks.

It took me 7 months to get stable on Nplate, I then used it weekly for another 3 years and now appear to be in remission having not used any drugs for a good few months. So don't let them rush you into a splenectomy before giving everything else a good try.

What job do you do? Many carry on as normal with any count. Once you are comfortable with low counts don't let your doctor be too protective.

As Ann said, it depends on what you do. I had an office job, so I worked with low counts. My doctor just kept telling me to go to work. Doctors are all different as far as work goes and there really isn't a right or wrong answer unless you have a physically demanding job.

I know it's frustrating, but hang in there. Many people have been where you are now and it does get better. Having a good, experienced Hemo can help a lot.

All I do is drive a forklift at a soda plant, with moderate lifting mixed in there sometimes. I have to imagine anything over 20 would be ok, but my hematologist doesn't seem to agree. Also, he doesn't want me to be on nplate long - term

On a side note, I just had a bone marrow biopsy done. That.... Was unpleasant

How long is long-term? People tend to think that N-Plate will be for life once they start it. That's not necessarily true. Some people do go into remission during N-Plate use; that was an unexpected finding. Also, if it stops working or something else comes up, you can always change treatments. N-Plate has helped people with ITP like no other treatment has. It's fairly new and before that, refractory people were out of luck. So far, patients seem to do well with few problems.

It might not be a bad idea to get a second opinion from a Hemo who is experienced with ITP. They don't all keep up with the latest research. Another doctor might be okay with allowing you to work light duties which would make you more comfortable about going back. I know I couldn't afford being off of work for any period of time. Unless a person has disability, not many people can.

Many ITP patients have bone marrow biopsies. I did too. They are not necessary unless the blood smear shows something odd, but most Hemo's do it anyway. It doesn't tell you anything about ITP but can rule out other things.

+1 to what has been said.

To work or not work is an individual thing....it's all relative.
I've been lucky I guess. Most of the time during the past 11 years of ITP fun, I have worked three jobs; full-time engineer (which involves more than sitting behind my computer here), I've had a home side-business for 17 years, and I front biker-bar bands .... Don't hit me Mr. Mean Drunken Biker, I'm just a mild-mannered musician with a Vespa and I bruise easily!

BUT....Never once has my hematologist said I could not work, as long as I felt up to it and took normal precautions. More than a few times I'd leave his office with a count of 4k and get on with reality. I knew what not to do and had his cell number just in case. Hmmmm....okay, I suppose ITP DID change that aspect of my life...I hate cell phones...but started carrying one after the ITP adventure began.
But basically you learn where your thresholds are, where you are safe, then you get on with life.

NOTE: I did mention Dexamethasone. But I don't think you'd like driving a forklift on the stuff. Although it's normally only taken for 2-4 days as a 'pulse' to boost counts. It is nasty and I have experienced some interesting hallucinations with it while at work (there is no panther living in my bosses office, really there isn't).
However, there are plenty of treatment options. I'm on inexpensive generic Cellcept right now. It doesn't affect daily life for me. There are also many other immune suppressants drugs which may work for you. The trick is finding what works for each individual....none of us respond alike.
And two months is far too short a time to stop looking for a treatment that is right for you and your lifestyle.
Don't get discouraged....keep plugging away at it....life continues.
Although, as has been mentioned, you might consider a different hematologist.

.

Hi everyone!!! I am 27 and found out in september of 2013 that i had itp. Back in april of 2013 i wad in the hospital with a count of 44k wwhich isnt too bad. Since then they drop well below 30k l.ive tried steriods they didnt help and the ivig with only 2 weeks of relief. I have a few other symptoms that arent linked to itp but my dr wont do anything about the other symptoms any advice. Thank u

My primary care physician is actually the one who told me that my hematologist was dead set on taking out the spleen, but during my discussion with him on Thursday he said he thinks it would solve it, but doesn't want to rush into things. Definitely a bit of a miscommunication!

As far as our nplate, he seems to view it more as a stop-gap to keep me in the safe range. I've only received the two smallest doses thus far, so I'm definitely not ready to give up on that yet at the expense of something so permanent as a splendectomy. So, I think I will push to keep trying it, and stay on it for some time if need be. Only issue I've had with it was a pretty awful headache for about a day after receiving the first dose and a bruise the size of a baseball.

If I can get my counts at a decent level, I'll definitely push to get back to work. I'm sure I could at least go light duty. I'm very fortunate that I've at least had company provided short-term disability coming in

Ah yes, headache is the most common symptom from Nplate. I was lucky that I never had it but many do.

Freak1986, what other symptoms do you have? We might know if there's likely to be a connection with ITP.

AJ:

ajlead wrote: but during my discussion with him on Thursday he said he thinks it would solve it

Ah, if I had a dime for every time I heard that! There is no way to know. It's a gamble.

Sounds like a plan. Hopefully he knows how to dose N-Plate and does it properly.

Freak:

Hemo's tend to only deal with their specialty, so if you have symptoms unrelated to ITP, you'd need to see a doctor who deals with that particular area.

Exactly why I really don't want to go through with it. IF there was a guarantee that it would work, and work permanently, I might consider it. Unfortunately we aren't that lucky.

I got a good laugh out of your panther story, Weird :laugh:

ajlead wrote: Hi everyone. I was diagnosed with ITP the week before Thanksgiving. At first, I responded moderately well to Iv - ig, never at all to prednisone. Now, iv - ig does very little. I finished my fourth round of rituxan last week and have been taking antibiotics for h. Pylori for a week with no improvements in counts from those treatments. I have also received two smaller doses of nplate.

I just received immunizations for a possible splendectomy today, as my hematologist is becoming convinced that it is going to be necessary. I'm very concerned about the possible complications of both the surgery and potentially living the next 50 years without my spleen (only 29).

Wondering if there is any other way to go with this. I really want to get back to semi-normal life, so it's tough to stay positive and keep fighting to keep my spleen, especially as stubborn as my case has been.

Thank you,
- - - Adam - - -

Adam,

My name is Mike. My wife was diagnosed with ITP in October, so not much before you. You should really go read my post "Wife with ITP..." in this same forum. In it, I have chronicled in real time her whole experience with ITP the last several months. You will get her experience with diagnosis, spleen removal and now her Nplate treatment.

FWIW, yesterday her platelets were 1.2M. Yeah, 1,200,000. So, yes, Nplate can work.
Can work too well! Like Sandi suggested, get a hemo (if you can) who knows ITP. Our first hemo didn't know much and admitted so and referred us to a hemo at a research hospital. It has made a big difference.

My hematologist does have a decent amount of experience in ITP. I really do like him, I just have to advocate what I think is best for me. I don't really have a lot of other options anyway, living in small town Nebraska, aside from driving the 4 hour round trip to Omaha a couple times a week to see one, several of which I have seen, as he is affiliated with other hospitals. I do have family or friends that I could stay with, but I would be away from my wife and daughter

I have night sweats low grade fever weight loss hot and cold flashes. Was just in the er with a headache and stiff neck which they said could have been a brain bleed that went away on its own. Still having headaches tho.

I have night sweats low grade fever weight loss hot and cold flashes. Was just in the er with a headache and stiff neck which they said could have been a brain bleed that went away on its own. Still having headaches tho.

Well, my destruction was slower this weekend than it has been, so hopefully something is improving things. Doctor gave me that ull dose of iv - ig and a mega-dose of steroidds yesterday, and mega-doses today and tomorrow.

However, he said if this doesn't work, he wants to do splenectomy. Doesn't want to keep me on nplate because 'it doesn't solve the problem.' Well, give me proof a splenectomy will!

So, really hoping this works well (for obvious reasons) and because I really don't want to get into an argument with him that I am absolutely not ready to go that route. It has only been two months since I was diagnosed, and not quite five weeks since the start of my rituxan treatments. It's way too permanent, and honestly, I really don't mind a once a week shot.

Wish I was more informed to help you out, freak. Sounds nasty

Ajlead:

A few people here have gone to Specialists/second opinions outside of their area, and the Specialist has worked with their local Hemo so they didn't have to travel all the time. That is one option you could look into.

Also, the visits will slow down. I'd go for CBC's and then get a call from the nurses if treatment was needed. Most of it was coordinated over the phone.

Freak:

Night sweats, fevers and weight loss should be investigated. Maybe you need to be a bit more pushy about that.

Ive had a cat scan done to check for any masses in my whole torso and my hemo said was normal. Still having all the symptome ans really bad rib pains. Just started the rituxan had a reaction to it scratchy throat n swelling of my throat so they had to stop it bc the reaction was getting worse. Any suggestion on how to be more pushy with the othet symptoms? My dr wants me to try rituxan again next week but im a lil concerned the reaction will happen again.

Freak:

As far as being pushy, you just have to keep mentioning it and if he won't listen, get another opinion.

As for Rituxan, the reaction may happen again and if so, it will be controlled like it was the last time. They might give you more pre-meds to try to prevent it. Many times though, reactions only happen the first time for some reason and patients do well with subsequent infusions.

Thank u i talked to the nurse and chose to try the nplate to see how that goes they were concerned bc.of my throat swelling and not being able to control it. Do you think seeing my family dr avoyt the other symptoms would help? thanx so much for the replys.

I have no idea if your family doctor would help, but it couldn't hurt.

You should see your doctor, but when my platelet count was low I too got hot flushes. I would start to do something like cleaning or anything that needed a tiny bit of efford and would suddenly go boiling hot and totally fatigued. At one of the UK ITP Conferences, one of the speakers said that with autoimmune conditions sometimes the heat regulation system in the body goes awry. When my count is high I don't get it.

My temp gauge is always off. I either freeze or sweat, no in between. I will sometimes even have ice cold hands and feet and goosebumps on my arms, but have sweat pouring down my face and head. Very bizarre. My normal temp is 97.6. If it gets to 99, I feel like I have a high fever.

I think the alert with Freak is the combination of things - weight loss, night sweats and fevers with the low counts. I'd want that checked out too.