Steroids...Rituxan...Next (N-Plate, Splenectomy)?

I'm new to this group. I'm a 38 yr old, (otherwise) healthy guy with a wife and a couple of young sons (1 and 3). I was diagnosed with ITP a couple of months ago with count down at 1k. Since then, I've had mild or no response to first line treatments.

- IViG - Counts got up in the low 20's for a few days
- Prednisone - even at 100mg/day counts stayed below 20 (and mostly down around 10)
- Dexamethasone - 4 day course got me in the teens briefly
- Rituxan - After 4 weeks of steroids being ineffective, had to ween off b/c of side effects and dropped back below 10 again. Did 4 week course of Rituxan. 3 weeks after the last treatment and I'm consistently 5-7k still.

My doctor is recommending splenectomy relatively soon. Although my symptoms aren't generally a problem, and I feel fine, I guess the risk factor when <10k lends a sense of urgency. In order to get to the point where I can have surgery, she is recommending N-Plate, which is supposed to stimulate platelet production.

I'm somewhat nervous about both the N-Plate, since it's a newer treatment for ITP, and the splenectomy, since it can't be undone and doesn't work ~33% of the time.

I'm also curious about alternative treatments and the time it takes to give them a chance to work considering the risks of being <10k for a long time.

Anyone with experience with N-Plate?
Anyone been <10k for a long period of time and been OK?
Anyone tried alternative treatments in order to try to avoid splenectomy?
I've read a bit about splenectomy, and it seems like there are plenty of good and bad stories.

Lots of questions. Thanks for listening and any responses.

Will

Hi Will Welcome to the boards. I had NPlate. Your right NPlate increases platelet production so personally I don't see why they use it on patients who don't have a problem with platelet production, but I guess the point is to get platelets up what ever way they can. My counts went up as high as 388 at one point, and I believe others have had even higher numbers on NPlate. But high counts like that from NPlate isnt good, because new platelets are really sticky and such an influx into your system could cause clotting. I know they adjust the dosage according to weight and current platelet count, so I guess after awhile of using it they could get it just right to keep it "normal". The side effects of NPlate weren't worth it for me. It's been 4+ months since last treatment and I still have joint/muscle pain. It was terrible while on treatment. I wouldn't go back it it for anything. Everyone is different though! I think there are a few here who have been on it for quite awhile. I hope they post for you!

Research has shown that a significant percentage of people with ITP also have production problems. It just doesn't show up on a bone marrow biopsy and many doctors are not aware of it.


www.hematology.org/Training/Trainees/2768.aspx

www.itpscience.com/regulation_platelet_production/regulation_platelet.html

www.scripps.edu/mem/itp/cause.html

asheducationbook.hematologylibrary.org/cgi/content/full/2008/1/219

Hi Will!

ITP can be a real "ride". Between treatment choices and fluctuating platelets, I hardly know which end is up most of the time! With your history of poor response to treatment, I am hoping your doctors have run every test in the book to confirm the diagnosis of ITP, and they're sure there's nothing else causing your platelets to be so low. Personally, I would give N-Plate a try before going after your spleen. You can always come off N-Plate if it's not working, or the side effects become unbearable. However, as you've already suggested, you can't put your spleen back once you take it out. I like to leave the more permanent measures as a last resort.

But, just as we all respond differently to treatments, we have have different life circumstances that we must consider. The decisions and choices I make may not be suitable for you. Is foreign travel some that's important to you? How do you feel about weekly injections? What is your comfort level in regards to living with a permanently compromised immune system? These are all things you need to consider. If you need a sounding board, we're here to bounce ideas and concerns off.

Blessings,
Hauna

Thanks for the feedback.

My doc is not really interested in keeping me on the NPlate as a long-term treatment, just as a way to get the platelet count up so I can have surgery. NPlate is just a way to get me to a "safe" level since IViG and steroids didn't really have enough of an effect, even temporarily. It's the splenectomy they are really looking at as the treatment. So, short term NPlate? Not so bad?

I hear you about the choices. Definitely like to travel, but right now at 5k platelets, I can't really travel anyway. So, I guess if I have to give up Africa for just being able to travel at all, that might be an OK trade-off.

Just seems so early to be taking irreversible courses of action. That's why I'm curious about how sketchy it is to bide my time at <10k while trying other options (e.g. alternative stuff like Vitamin C, homeopathy, acupuncture, etc). Anyone hung out for a while at really low numbers?

Thanks, Will

Hi Will,
Couple of things. First, Rituxan could still kick in. It can take 4-12 weeks from treatment to show results. Many of us showed results within a month but a few it took much longer.
Second, if nplate ends up working for you, why not use that treatment instead of the splenectomy? Esp. since you were only recently diagnosed, and maybe your disease will take a turn for the better.
Third, alternative treatment. Hmmm. There is a discussion folder here devoted to that topic and you'll find lots of conversations and suggestions. Read up - this discussion board is loaded with information! You seem like you are doing your research, so let that guide you. My opinion is 'nothing is better than homeopathy' - I suppose you can take that two ways but after you catch up on the conversations you'll know which way I mean it.

There are a couple of other treatments (on the Western medicine/big pharma side of things) like Promacta (similar to nPlate but a pill and sometimes one works and the other doesn't) and older stuff like Imuran and Danazol. Read the PDSA treatment page!
Good luck and let us know how you are doing -
Erica

Hi Will,
Only the other day on the ITP Aussie Chat, several of us were saying if we knew what we know now at the time of our splenectomies, we would have fought harder to hold onto our spleens, due to the increased risk of infection for the rest of our lives once they are gone.

Another of the new ITP drugs for you to consider is Promacta/Revolade/Eltrombopag. It is taken in the form of a tablet daily, and like N-plate stimulates the bone marrow to produce more platelets.

For the past four years I have been in the trials for this drug. Initially my platelet count was less then 10, and it took about eight weeks for the drug to kick in. It seems to vary from person to person as to how long it takes to work. Up until June this year, my counts have been pretty unstable, and have swung greatly. Since June my counts have been more stable sitting between 49 and 350, by stable I mean that I have stayed out of the dangerzone of less then 10.

The main side effects that I have experienced are nausea, headaches,stomach upsets and muscle and joint pain.

If you would like to read about the findings of some earlier results from the Extend(which is still ongoing) trial for Promacta, I have a power point presentation which I could email you, just drop me a line.

I encourage you to educate yourself, and to make a fully informed decision. This is a great place for support, and a great place to learn. Keep asking questions.

Vanessa

Hi Will,

Fortunately, there are many varied experiences on this board. But, it is not a place that's particularly alternative treatment friendly. So, many that have been helped with something alternative tend to not stick around for long, so you may not hear their story. Just keep that in mind. But, still plenty of good information and it will certainly give an overview of what's out there. Likely you'll get the consensus that it's waaay too early to think about losing your spleen. Plenty have been hanging out at < 10 for months to years with little to no serious problems. Not sure where you live, but the doctors in the USA seem to treat more aggressively than in the UK or most other countries. Yet, the outcomes aren't markedly different. It seems that the constant worry and scare that many put into you is one of the worst things. Here is a good article that I posted on here a few years back, and I think it can help relieve some of that worry:
Can I die from ITP?
By James. N George, M.D., Oklahoma City, George R. Buchanan, M.D., Dallas

www.itpsupport.org.uk/american/%209.%20Can%20I%20Die%20from%20ITP.pdf

You also asked the following questions:
I'm also curious about alternative treatments and the time it takes to give them a chance to work considering the risks of being <10k for a long time.
Not all alternative treatments take a long time. My 12 year old daughter was much like you, hanging out btw 4-10k most of the time. Weekly IVIG would barely make a blip in her counts, and made her feel horribly ill for 2-3 days. She had anaphylactic shock reactions to both WinRho and IVIG, from which she nearly died. After identifying and giving the correct homeopathic remedy for her, her platelets went from 11k to 411k in 4 days (maybe less, that's just when she was checked.), and they've continued to stay up.
But, each person varies. Not all will respond that quickly and that completely, but you should start to see some gradual improvement in the first few weeks. Many will notice other symptoms start getting better, too, whether it's in the emotional or physical realm, so there are many indicators, beyond just the ITP symptoms.

Anyone been <10k for a long period of time and been OK? Yes, plenty on here have done that. My daughter was like that for 4 1/2 months. She did get a bit of a brain bleed when newly diagnosed(not spontaneous, due to injury.), but again I used a homeopathic remedy called 'Arnica', that is good for stopping bleeding and pain, after an injury. It worked immediately for her. There are many homeopathic remedies (Arnica's not the only one!) that can be given in an emergency bleed, and usually the body begins responding to it within a few minutes or less. Good to have on hand in case of emergency, or on the way to the hospital.

Anyone tried alternative treatments in order to try to avoid splenectomy?
Yes, we did for our daughter. At the hospital we went to, the nurses kept saying that the next thing she'd have to do was a spleenectomy. We said "No thanks!"

You can find a big discussion on homeopathy, as well as read my daughter's story, if you go to the ORIGINAL forum, scroll down to Natural Treatments, then go to the "Homeopathic Doctor" thread.

Good luck to you!
April Bowen

Hi Will,
I've been in your same situation. I've had ITP for over 4 years--but was in remission until July 18, 2010. I was in the hospital for almost two weeks with no response from the IVIG treatment and Decadron (40 mg). My platelet count would be between 2-4000. Something was holding my body back from responding (this is my theory--very run-down, other medication, eating wrong). I was released from the hospital after a small response from the IVIG (up to 12000), but almost 3 weeks later--was back in the hospital with a count of 1000. This time because I changed my diet (after doing more research), I hardly had any bleeding or bruises. This did make me feel a lot better.

What I changed in my diet after doing much research is foods listed on web sites that caused low platelets: I stopped drinking tea and coffee; stopped eating tomatoes; artificial sweetner; grapes or berries; not much onions or garlic. Mainly these foods. The last thing I did that seemed to help me was to checkout the medicine I was taking. One of them was Sinequan which I used every few days to help me sleep. Once I stopped this medication and continued on my Decadron treatment (4 treatments within about 6 weeks to 2 months), my platelets went up past 300,000. They have been there for 2 months. Now, this doesn't mean they will stay up this high--but at least I am getting a small "rest" from all these hospital stays and constant worry.

So, you may need to also look at your diet and any medications you are taking (if you are taking any). Also, checkout any type of supplements you might have taken. This is just a thought. Or, may be your body is run down and needs to heal itself.

If I had to, I would also consider homeopathy; at least in moderation.

Hope to hear that you are better soon. Just remember, for some reason when we first come down with ITP--even after being in remission, our body seems to be run-down and needs rest and healing. We live in such a stressful world anymore and it seems to effect our body.

Blessings and get well soon,
DeeDee

Hey Vanessa,
Can you send me your powerpoint presentation?
melbyrd12@yahoo.com
Thanks, Will

Will, I forgot to add that when I received my IVIG treatment (after 2 times), my doctor did the IVIG over 24 hours which really helped a lot. My doctor was a student of Dr. Howard Liebman at USC and this is where he learned this treatment approach. I will have to say that on me, it really works and bring my platelet count up. Also, whenever I had a treatment with IVIG, I drank 8 glasses of water before the treatment, and each day, to keep the side effects down.

Hope this info helps.
Dee Dee