Rixtuxan versus spleen removal

Ann wrote: Hi Russ, weight loss won't help with the platelet count but eating healthily will help lessen the side effects of the prednisone. Rituxan is fairly heavy duty but lots here have used it. It is said to work for just less than 50% of those who try it. If you're not having any bleeding symptoms then you have time to consider your options. Good luck with whatever you decide to do.

I guess I should have written that the one thing they found with me was fatty liver which the Dr. said would very possibly lead to a production problem for platelets. Hence, he thinks I have both a production and a reduction problem going on. The fatty liver is reversible so hopefully the weight loss and much better diet will help there and perhaps lead to a platelet count that is livable as is. Also, I have to believe that since they don't really understand what is the cause of ITP then anything that might perturb the variables in your favor might help. Clearly there are those who are very fit who still have the issue but given each body is unique it's always worth a try, right? At least it's something to work towards. Who knows, maybe having ITP will cause me to live a live that spares me from heart disease. Never know.

Nitan:

It doesn't surprise me that your doctor hasn't mentioned magnesium. They tend to automatically go for the BP meds. My doctor did too, and I would not stop taking those meds in favor of magnesium. I do add magnesium though at times when I feel my BP is on the rise. I'm glad your BP is good right now, so you might as well just leave things as they are. A viral infection as a reason for headaches. Now I've heard it all. If you have recently been on Prednisone, that could be the cause. Many people report headaches during and after tapers. There could be many causes and blaming a virus is always convenient when they just don't know. Stress can also cause headaches....been there!

Russ:

It would be a long shot if losing weight controlled the ITP, but since you have to change your diet to reverse the fatty liver, it certainly won't hurt. It is true that problems with the liver can cause lower platelet counts, but I've never heard that fatty liver could be the cause. Most people do have both production and destruction problems according to recent research. Give it a shot and let us know how it goes!

Nitin:

I, too, had trouble with my BP after my first time with ITP (back in 2006). I'm sure the Prednisone was making it high as I never had any trouble until then. It was really making me worry as it seemed to get extremely high. But, for some reason, the second time around (2010), all the drugs they gave me (IVIG--5 times, Decadron) seemed to bring it back down. My pulse and BP actually seemed to get quite low while taking the IVIG. So, you just never know what will happen with these things. I think it would be a good idea to add foods to your diet that are high in magnesium. Also, a little exercise does help, too!

Russ:

If you don't have any bleeding symptom and your platelets are not too low, I wouldn't worry just yet. But, it sure seems like a good ides to work on losing weight...just to help control other problems that could develop later on. A good book to get you started is "Eat To Live". The person who wrote the book was at the ITP conference and has some good ideas.

russ wrote: I guess I should have written that the one thing they found with me was fatty liver which the Dr. said would very possibly lead to a production problem for platelets. Hence, he thinks I have both a production and a reduction problem going on. The fatty liver is reversible so hopefully the weight loss and much better diet will help there and perhaps lead to a platelet count that is livable as is. Also, I have to believe that since they don't really understand what is the cause of ITP then anything that might perturb the variables in your favor might help. Clearly there are those who are very fit who still have the issue but given each body is unique it's always worth a try, right? At least it's something to work towards. Who knows, maybe having ITP will cause me to live a live that spares me from heart disease. Never know.

What an interesting mix. If part of the problem is a lack of thrombopoetin caused by a fatty liver then that part of the problem isn't ITP. So the weight loss won't affect the ITP but could affect the other problem, if there is one. Go for it and keep us updated.

Quick question. My Dr. seems to be on the current path: Predisone -> Rituxin -> Spleenectomy based on what he said last time. I've read a bunch since then and notice that H.Pylori infections can be a cause of ITP. Why has he not mentioned this and looked for it? Has anyone else had them check for this? I for sure am going to bring it up with him at our next meeting as to his thoughts on it but it seems like a no-brainer to at least check for from what I read at hematology.org.

Russ:

Oddly, most of us have had to bring up H. Pylori testing with our doctors. I did too. Very few hematologists are totally up to date with ITP because it's not their primary specialty and they can't know everything about every illness they treat. Many of us were tested, a few were positive, and of those, only a handful had success with platelet counts. Treating it just does not get results very often, but it never hurts to try.

I see quite a few treatment options missing from your list. There are a few inbetweeners that are valid options.

Can't stop thinking about this. Rituxin scares me to death. 3% mortality rate with only 40% effectives (long-term)? I don't know. I've put it off temporarily but not sure how I will come to a decision.

I have no symptoms from ITP I can detect other than now that I've learned about my itp I do recall some small cuts seeming to take longer than expected to stop bleeding during the past year or so.

Rituxan scared me as well. i stopped reading the side effects after the first page and told the dr not to tell me anything more about it or i would never do it! I had the allergic reaction the first treatment and thought about not going back for the last 3, between the allergic reaction and the nasty side effects i had from it. However, I am now 4 months out and have platelet counts in the 250 range. So, while it was scary and probably the worst month of my life, it was worth it. I had been going through treatments since January of 2012 and it is so nice not to be on any medication right now and have normal platelets. So if you are one of those 40% or so that it works for, you will be thankful you did it.

If you are not having symptoms and are not interested in treatment, think about trying a gluten free diet. I saw a nutritional doctor last month who told me she has had a lot of success with gluten free diets and people with autoimmune diseases. Not sure if it works for everyone, but I have been doing it for 3 weeks now. I figure it is better than infusions, so it is worth a try. Maybe something you want to considering trying for a few months before you do any more invasive treatments...

Russ:

The mortality rate includes mostly people who have other pre-existing conditions (such as heart problems, cancers, etc) or people who are very immuno-suppressed from chemos, etc. The average healthy person with 'just' ITP does not fall into that category. The side effects look horrendous, but most do not have any of those problems.

Keep in mind that if you had a splenectomy and it did not work, you may end up with Rituxan as an option and would then be more immuno-compromised than you are now. Tough decision, I know, and I'm not trying to talk you into it...only pointing out a few things.

When Rutuxan works, it can work for a year or longer and having that year can be a wonderful break. I had 13 months of remission the first time, then had only one infusion and have been in remission for 7 years. Prior to that, I dealt with ITP for 8 years.

Thanks so much for the responses. I think I'm going to do the following in order:

1) Talk to Dr. about H.Pylori. It's probably a long shot but it's one of those things that if you have it's best to get rid of it anyways. Studies seem very inconclusive as to whether it's really involved in ITP or not but again, if you have it, get rid of it.
2) Continue for a while on as minimal of Prednisone as I can while losing weight. Since I have fatty liver it's possible that bringing my weight down 30 lbs could result in enough production to bring me into the no-treatment zone of over 50 without meds. Might do nothing of course but it's worth a try.
3) Ask doctor about the other steroid dexamethasone and if there is any value of trying it briefly instead of prednisone. Prednisone works for me but just as with others when its dosage is dropped my platelets drop too.
4) If 1-3 don't pan out strongly consider Rituxin.

Am I missing anything? Diet of course will be something I'll continually be willing to adjust as we find things that help including even gluten free if it helps. Had a good friend who nearly starved to death as a child due to gluten allergy and it not being understood by the doctors at that time (early 70's).

Spleenectomy is not really on my radar right now as I feel it's a pretty radical solution. I kinda figure I would rather walk around with platelet levels in the teens if I have no symptoms than get a spleenectomy.

Prednisone long term is not a good idea even at a low dose. You haven't tried mycophenolate or azathioprine which are steroid sparing immunosuppressants. A low dose of one of those might be better.

I didn't do rituxan either.

+1 on long-term Prednisone....it's cheap and easy to get, but it has it's issues.

Dexamethasone? Give it a try. Can't stand the stuff myself. Works as a rescue for me though. Nasty nasty nasty.......did I mention it was nasty? I just did two 4-day pulses in a row of the junk.....aaaaarrrrrgggh! No more.

Have you tried anything else? Cyclosporine? CellCept? Promacta? N-Plate? Lots of options.

As for drug warnings......pretty much any drug label from aspirin on up will scare the bejeebers out of one. Lawyers need to cover all bases on those labels.
For that matter, 'LIFE' should probably come with such a warning label.
.

I did the Dexamethasone 4 4-day pulses like I mentioned before. I think all I really needed was 2 of these pulses and I would have been fine. I've been in remission for 2 years, 3 months and my platelets have been holding steady at 336 (as of today!!!). This is the second time I have had a remission with the pulses; the first time was in 2006 and it was for 4 years.

When I attended a conference in LA a few years ago, I heard a lot of the hemos mention that once you have had the really heavy duty drugs, the pulses probably won't give you a long remission any longer. I'm not sure why, but this is what they had said (most of the hemos who attend the PDSA conference). So, I have opted not to take any of these drugs and just stay with the pulses, if I need to.

Each case is different and unique (my doctor and I discussed this today). What works for one person, won't always work for another. He did mention that particulary for me, I do need less stress and to rest when I can.

Dex pulses are only a 'temporary rescue' for me....they always have been (way before I took any 'heavy duty' stuff). I have never had the count increase from Dex last more than a week or two. And they only get me into the 20k range if I'm lucky.
This recent 2 rounds over the past couple of weeks; I went from 4k to a whopping 8k. :whistle:
Yep, everyone is different.
.

This is really good information. Thanks everything for sharing. I feel much less anxious about the Rituxin as yeah, I'm 44, healthy, never smoked or drank a drop of alcohol in my life. Don't drink coffee or tee. So it's likely I'd tolerate it fine. Still, in no hurry to rush into it.

I agree with not wanting to be on Predinisone long-term at all. Funny though that I experience little side effects like many of you seem to. At high dosages I noticed increased sweating and feeling stimulated a bit as well as some acne but nothing horrible. At my current dosage of 20 mg/day I notice nothing really. Of course, I'm 6'2" and 225 lbs so it could be my size relative to others for a given dosage that makes a difference.

I will be bringing up these other options with the Dr. Also, I'm pretty committed to getting a lot of meat out of my diet and eating a more whole grained food and fruit diet and dropping weight. I feel that's worth a try before anything too drastic as I believe strongly we are overtreated these days with medicine where diet could help or even cure. We'll see.

@ Weirdjack:
I also wanted to mention that in each time when my ITP came on (first 2006, second 2010), that a medication I was taking started my spiral down in my platelets. But, once I got doing downward, it was like nothing could stop the sprial down and the second time I hit "1" platelets. My doctor now feels the same way about my particular situation.

He really feels my particular case is different than any of his others. The second time this happened in 2010 I was having symptoms of a problem about 5 months before my platelets fell (practically all in one day). I was getting eczema on my lips in various places (lips were getting swollen, too). And, after my second hospitalization in August 2010, I stopped this medication to do allergy testing--and that's when my platelets started going back up (there was a 6 weeks period where they stayed at 4).

This could be good and it can be bad. Since all my life I have had trouble with medications, it means I have the potential for my platelets to drop each time I add a medication in my life. I presently only take one medication. So, I'm trying really hard to keep the bp down and the colestral in control. Just thought I'd mention this as I met so many different people with different situations at the PDSA conference. And, a lot of people do live with low platelets; but, we are unique.

It's interesting to see the different versions of diets that each of us considers to be healthy. I've been trying a new diet (lifestyle change) and mine is pretty much the opposite of Russ's. Now if I can just make it to 30 days straight!

I do agree with you Sandy I can do a really good diet for one week or two (I cook my own pinto beans and black beans; I buy special mixed salads from Costco; eat wheat bread; I cook special soups with lots of fresh veggies, black bean, and brown rice). But, then we plan a trip to our special casino and their really good buffet! (though, I hardly eat any meat, only turkey and chicken). This is what makes life fun! But, then I don't have a weight problem and I do exercise.

Sandi wrote: It's interesting to see the different versions of diets that each of us considers to be healthy. I've been trying a new diet (lifestyle change) and mine is pretty much the opposite of Russ's. Now if I can just make it to 30 days straight!

Mine is partly religious influenced. Im Mormon and we have this "word of wisdom" health code which for over 150 years has advocated grains, fruits, etc... and to eat meat sparingly in addition to of course our well known abstaining from alchohol, tobacco, coffee, tee. Interestingly this is pretty much the whole food diet (except that's I guess full-on vegetarian ) now advocated by many. As Americans most of us pretty much end up not adhering to the "eat meat sparingly" part. I realized just how much meat I was taking in and decided there very well could be a connection since if the Lord says to "eat meat sparingly" it's probably for more reasons than just what PETA would advocate for. Of course you might think I'm crazy and that's ok but I'm going to at least for once in my life see if I can really bring the meat and dairy content down in my diet and see if perhaps ITP won't be affected. You never know so here's hoping.

For the moment I've put off Rituxan but I don't think I'm as afraid of it as I was before so at some point I may be trying it.

Russ,
It sounds like a very good code to live by and would sure seem to be better for your health.

I know in the book I mentioned before the author does mention that the Seventh Day Adventist located in Loma Linda, CA, are some of the healthiest people in the world and they are mostly complete vegans. Just thought I'd mention this.

Ananta,

How long had you have ITP for before taking the rixutin?

R

Russ:

No, I don't think you are crazy and if you feel the need to try it, go for it. I have also started a special diet and some people think I might be crazy for that. I've been reading for years about gluten sensitivities and autoimmune disorders. It just kept coming up over and over again. I never had the time or energy to follow through with it until I quit my job a month ago. I am even taking it a step further and doing a Paleo diet, which excludes all gluten products, soy, dairy, legumes, and sugar. It promotes eating more meat, vegetables and fruit. It's a hard diet to follow when you consider that you can't use bread crumbs and such to coat chicken, etc. I have found that almond meal and gluten free bread crumbs taste even better, it's just finding all of the replacements that is hard at first. Also, I'm not much of a meat eater...don't like steak, ribs, sausage, so I am limited with those. I'm eating more chicken and fish with the occasional cube steak.

Hi all
Update- I did Rituxan treatment finishing on 05-Oct-12 with counts of 6k. Last month my count went up to 25k.
On 20-Nov-12 my count was 17k. That may be due to a viral infection I had that week. Now I am only on 10 mg Prednisolone alternate days. My doc is advising waiting for 1 more month; if counts do not improve than to go for Splenectomy. I too am getting frustrated.

Sorry to hear this. Hoping that if I go for Rituxin it helps but clearly it's a crap shoot. Still, I don't know about the Splenectomy as it's just treating the symptoms and not a cure. Are you having symptoms otherwise Nitin? Keep us informed what you do as I'm on the same path.

Nitin, are you having any worrisome symptoms? Like you said, your platelets could have went
lower from having a virus.

I know it's frustrating after going though all these treatments, but remember also, that it's
the symptoms that make a difference. Try to rest and take care of yourself, and do keep us updated on your progress.

Dee Dee

Hi Dee Dee
Thanks. At present I am getting few bruises in my arms n legs and blood blisters in my mouth.
Hi Russ
Thanks for ur words. Most of the treatments are symptomatic.
Nitin

Nitin,
As long as your symptoms stay under control and fade away instead of getting worse,
it's not so bad. Do you watch what you eat? Certain foods can bring on the bleeding
and bruising symptoms. When my platelets went to 1000, I really watched what I ate;
certain foods seem to thin your blood and this is what would make my symptoms worse.
Even with platelets under 10,000, my symptoms would fade away.

Good luck to you and try to keep the faith. Sometimes it's a little bit of a journey.

Would you consider a diet change? I saw an integrative Dr who told me she has had luck with helping autoimmune diseases by putting people on a gluten free diet. I started doing it in October. Before that my platelets were hovering arounf 170-180 since I stopped the Rituxan. They are now over 300! Not sure if that is really what is working, but it might be worth giving it a try for a month. My platelets jumped significantly after one month on the gluten free diet.

It sure beats having your spleen removed and can't hurt to try for a month. I know I would rather eat dog food than go for Rituxan again so I would be willing to try anything.

Sorry the Rituxan did not seem to work. This whole process can be very frustrating!

Hi Dee Dee
Thanks for your words. It really gets frustrating at time as you are hoping for a remission or at least counts to increase. I got some blood blisters in mouth which disappear in 2-3 days, some petechie on arms n legs, seems to be fading away now.

ddinap did you had any gluten allergy symptoms?

Thanks all for your words.
Nitin

I had no gluten allergy symptoms. However, there has been a lot of research on gluten lately and the effect it has on the body, especially the immune system. I was told by 2 different medical doctors to try to eliminate it from my diet. Apparently wheat is now very engineered, unlike what it was 50+ years ago. It actually gets absorbed into the blood stream through the intestines and can cause an inflammatory reaction within the body in some people. which causes their immune system to get confused and attack things it shouldn't. It is thought that in people with auto immune diseases (i have ITP and others) that that is their reaction to gluten. I guess you can have reactions other than the normal celiac disease/gastro symptoms.

i was very skepical at first as well, but figured it was a pretty easy change to make for a few months to try it, certainly better than steroids or infusions. my platelets were 310 at my last check last week.

I just figured it couldn't hurt to try for a few months.