long-term disorder, short-term treatments?

I'm sort of stumped here....

Seems there really aren't any good long-term treatments for ITP. Just short term things that you can do. Like Prednisone, Nplate, Rituxin, etc...

I found out that I'm not qualified for WinRho because of my blood type.

So I am wondering... if this is a chronic disorder, how are people living forever when there are only short-term treatments? Should I just expect to live the rest of my life going from one short term treatment to the next to just boost my platelets whenever they get low? I'm confused. Not really sure how this all works.

I'm on Prednisone, tapering. Currently at 30mg (starting today, from 40). Yesterday my counts after a week on 40 were 197, down from 216. I peaked at 292 on 60mg. Next week I taper off to 20mg, then 15 the week after that.

I imagine my counts will continue to go down and by the time I am off the pred, my counts will be super low, in that "unsafe zone" and we will be scrambling to find a different treatment.

Is that pretty much how it goes? Since my counts went from 292 to 197 from 60 to 40mg, then that represents about a 95 count loss per 20 mg, or 4.75 per 1mg of Pred. Assuming my body will be able to produce the equivalent of 10 mg cortisteroids on its own, then by eliminating the final 40 MG will leave me with a loss of 30 and 30x4.75 = 142.5. So 197-142.5 = 54.5, which, if all stars align, is just barely a safe enough zone for me to live off of no treatments for a while.

Am I being an idiot by trying to apply this mathematical formula to determine my outcome? What have some of the avid ITP people (who have been living with this for years and years and years) been doing as far as treatment?

Thanks

Oh and one final note, my Hemotologist yesterday said that because I am 33 years old, a splenectomy will gain more favorable results if I have it now, versus if I were to have it after 40 years. huh???

I don't think you are being an idiot but you are making my head spin

I've had ITP since 1989 - I no longer strive for counts in the normal range, just decent counts. So far I've treated twice - once with prednisone [on it way too long, that's another story] which put me in a "remission" [lower than norm counts but no treating] for 9 years [or 8, too long ago so I forget]. Then in 2002 had to treat again, refused prednisone so had WinRho and I'm back in "remission".

I think maybe you are trying to analyze this too much - as far as I know my platelets know nothing about math formulas

I wouldn't call you an idiot. I'm sensing that your a little bit of a perfectionist! It's all good. I am one too. The thing with ITP is one never knows! Your count changes as it wills. Even with the prednisone working for you now, maybe next week it won't! I know...it's terrible. I'm not handeling the not knowing well at all either. It really is an adjustment. Not only life style, but mind set. I've only been diagnoised for about 2 months and am still learning all kinds of things. It's gonna get better, one way or the other! We just can't continue with this "gotta know it all and now" attitude. It will, in the long run, cause more harm than good.

Should I just expect to live the rest of my life going from one short term treatment to the next to just boost my platelets whenever they get low?

basically.....yes! Unless your body "fixes" itself, I'm thinking that's what the rest of life will be for all of us.

Well, like I said before, you have to learn to roll with the punches. People don't necessarily go from treatment to treatment their entire lives. I've had ITP since 1998. I did Prednisone twice the first year, then had a three year remission. When I discovered my counts were back down (I had stopped having CBC's) they were in the 20's. I just lived like that for a few months until they dropped below 10, then I did Prednisone again...lower dose that time. I limped along about eight months doing low doses when I had to, then asked to try Rituxan. I got 13 months before counts were back down. I did Rituxan again, and have hit my 6th year of remission. My counts have gone into the 60's twice, but rebounded with no treatment. I have also been on Prednisone since then (5 to 10 mg's - not for ITP), but that could also be helping.

I didn't realize I'd hit 6 years, I think I reported in other threads that it's been 5 years.

The thing with ITP is: There are no quick fixes. There are no cures. You just have to find the treatment that is right for you, preferably one that you can tolerate and afford. There are remissions. Many people achieve that, some never do. The ones that don't, adapt.

Forgot to mention that I also tried Win-Rho and Danazol with no platelet increase.

Oh- forget the formula. It doesn't work that way. There have been times when I should have been down and I was up, and times when I should have been up and I was down. You can have increases and decreases when you least expect them. You can't make predictions.

I've done the same thing. Tried to calculate what my next count would be and it never worked out. It is really hard adjusting to the not knowing. I am coming up to one year of ITP and one thing that I have learned is to expect the unexpected.

You kind of learn to lower your expectations. I remember when I was first diagnosed, I wasn't happy with anything below 350. THAT was an unrealistic goal. I could get there, but couldn't stay there. As time went by, I was, and still am, happy to maintain anything above 30.

You can find a count that suits your lifestyle...a count where you can still do whatever activity is important to you, and strive to maintain that count. It might not be as hard as you think. "Normal" isn't necessary unless you're a pro football player.

I think the hard part is not having control of that part of your life. Some people are control freaks (I used to be) and that loss of control is hard to take. But you have to keep it in perspective. What if you were losing control of your body and there were no treatments? That would be much worse. There are worse things out there and if you can keep safe counts, you're doing okay. Like Steve (Gort) said, go ahead and have your pity party, but then take a look around and realize that things could be much worse. You can live with this. There are a very, very small percentage who have had major complications. They have had it rough. But those of us who can get counts up are doing okay. Treatments can be the pits - been there - but you do survive.

I agree with Sandi in many respects. I've monitored Sandi's replies and comments and compared them to my situation. My first confirmed ITP diagnosis was Feb. 2004.....probably had it longer. I tried several remedial programs...some worked a little...some didn't. Most recently, in Jan. 2010 I started my 'Rituxan Re-treatment' regimen. So far it is not working... and probably won't. In comparison, Sandi got several years of remission when she did her 2nd round of Rituxan. I'm currently between treatments and taking Preds as a default medication. Anything less than 20mg and my count will drop to 5-10K. There doesn't appear to be any reproducible predictable consistency between any of us.....but we're all still alive.

It's like having colitis or psoriasis or other diseases that go away and come back, you always have it but it sometimes isn't acting up. It may not act up for years and years, you never know if you are done with it until you are dead (presumably from some other cause).
Erica

The weirdest thing about ITP is how differently each of us responds to treatments. Some work for some and not for others. Some of us have had remissions. Some medicines work for a while but then quit. It is definitely a go-with-the-flow kind of disease. I've had it for 12 years, had a 7 year remission, tried all treatments including Promacta (except for Rituxan) and finally just went ahead and got my spleen out two weeks ago. You have to learn what works for you and how you can deal with the different effects/results you get. Hang in there. Each of us is different and you really just need to listen to your own body and your own gut about what to do. Be patient...we are all going to live a long long time with this crazy disease! High platelets to you all!!!

Fran

mcafiero, you just read my mind! I was literally about to post my first post on this very topic...

One thing I just don't understand is that is seems like the good results of most treatments are only temporary. I know everyone is different, and maybe the idea is to try each and see if one sticks. But long term I cannot imagine spending money and pain going from one to another with no lasting results. I was diagnosed in February this year and I am already thinking I may do watchful waiting after I get off prednisone. I just do not want to go through all the side effects again. Just wondering what is the point? I have never been really scared by the diagnosis, but my counts have not been below 11k, nor have I been hospitalized like others have, so I can't say how that would feel in that case. I may be diminishing the seriousness of ITP but right now the side effects feel much worse. Also concerned about the cost of treatments, because I am self-employed and have a high insurance deductable, so I am paying for everything out of pocket so far.

jane

I sort of feel like Hairball and I are very similar in the way our bodies are reacting to this ITP stuff. I too, am pretty sure I have had this my whole life. I've had nose bleeds that went on forever and I have never been able to shave with disposable razors because I will cut and bleed and bleed.

I'm glad to know that I have it though. Could save my life if I were to have a worse-than-normal fall miles into the wilderness on one of my backpacking trips. I rarely come home without a few gashes.

I can't believe I'm on my 5th week on Prednisone. No side effects. At all. I can tell it makes ya want to retain water though. I've noticed that a bit in my stomach and woke up one morning with a moon face, but drank a TON of water and pee'd all day and it went right away. Phew.

My personal opinion about the side effects of Prednisone is this: It messes with your head a bit. It can make people depressed or anxious. That makes a lot of people want to eat. Bad foods, too. Processed foods. Fast food. So of course they are going to get bloated and gain weight. And THAT will make them grouchy and emotional and down they slip into the funnel of despair.

But if you get onto a good exercise routine and eat really healthy, your mood will not go into depression. And you will not gain weight (given you compliment exercise with healthy eating, and small meals every 2 hrs). Honestly I think depression is impossible if you do that every day. After college I got depressed. Gained weight. Got a moon face. Cried a lot. Was on Zoloft, which did nothing.

My friend encouraged me to train for the impossible: the Pike's Peak Marathon . I started training, not knowing how I'd ever do it. My friend eventually would pick me up at 3AM and we'd drive into the mountains and start running while it was still dark. Somehow I did it. And have run the Ascent (1/2 Marathon) 5 more times.

I have been active ever since and 10 years later not even close to getting depressed. So I believe that the side effects of Prednisone can be countered with some determination.

As far as how I am going to deal with this long term, after looking at all the options, I still like the sound of a splenectomy over anything else. And if I decided to go that route, I will want to do it sooner than later. Maybe it will put me into a remission for 5-10 years and I can continue to live the best (youngest) years of my life. Then when I relapse I can take up golf and start going on cruises.

If the side effects of prednisone, which I don't really have are the worst part about it, then I would be happy to stay on a small dose of that long term if it works. But I also understand the risk of osteoporosis.

So anyway. That's where I'm at right now.

I love getting everyone's input. This has been a valuable experience. It seems that IPT really only affects really nice people. Maybe we all need to start being mean. Just kidding.

Good results are not always temporary. You have to look at the experiences here and figure out what might work for you. What do you mean by long-term results? A year, two, five, lifetime? One word that pops into my mind is: managing. ITP must be managed. Some people can manage it and still forge ahead without too much disruption.

Examples:

1. One person here was able to maintain safe counts (30 to above normal) with a Win-Rho treatment every few months. For her, treating with Win-Rho when she had few side effects once every few months was worth it. A short treatment every 2 to 5 months was not intrusive on her lifestyle.

2. Prednisone can cause remissions for some. Maybe not the first round, but perhaps the second round. Yes, it's horrible, but just because counts didn't stay up the first time does not mean they won't the second time. That happened to me and I'm not the only one. I got three years and in that time, all the bad memories faded. The next time I had to treat, I took a deep breath and decided I wasn't going to let Prednisone get the better of me. I laughed at myself and actually have some funny stories. That didn't make it a piece of cake by any means, but I wasn't the witch I was the first two times.

3. Rituxan - many have had good remissions from Rituxan. The average is a year, but many have gone beyond that. I wouldn't consider this a good plan long-term (as in, use over and over again), but any break is pleasant.

4. The TPO's can help you manage ITP. It might be a bit time consuming and yes, it's a short-term result, but with a long-term ability to manage counts.

Money can be a factor. I've been there...had really bad insurance at one point and I paid my fair share of medical bills. I decided I'd rather spend the money on other things so I switched my treatment plan. Many have had to weave around and find other ways, and there are usually other ways.

You guys have to realize that again, "good results" are in the eye of the beholder. "Good" to some is getting to 35 or 50.

Jane - only you can decide whether or not watchful waiting is good for you. Take a look at your symptoms, lifestyle, etc. and if it works and you are comfortable with it, give it a try. You can always change your mind in a minute if things change. I was fine at 15, but I noticed that the longer I went with counts around there, the worse my symptoms got by the day. If that happens, you treat.

Mc - I can guarantee you that Prednisone depression is not caused by eating too much or gaining weight. That factor didn't even come into play with me. I was hit by steroid depression big time, but it had more to do with my lifestyle than anything.

I had a stressful job (still work there today). I had more files piled on my desk than I could handle in a day...all with deadlines. It was hard to keep up on a normal basis, let alone on a drug that caused me to not think clearly. My mind would race and I'd make errors, errors that cost the company money. Then I'd get in trouble which would make me feel inadequate. I was always in such a hurry that I stuttered when I spoke, my hands shook and I couldn't keep up.

Then I went home to three kids who all had activities to be driven to. My husband travels, so it was all me. I'd pull in the driveway, they would jump in the car and we'd be gone until 9 at night. Come home, make dinner, help with homework, clean, fall into bed at midnight. Get up and do it all again the next day. I was battling exhaustion, stress, fear of getting fired, side effects piling up and one day I started to cry and didn't stop for four days. I fell into a well (figuratively) and couldn't get out.

Steroid depression is very real, and not just for those who are busy. It's a known side effect. I wasn't having much trouble with my weight.

Sorry I am very long winded tonight on this subject.

Sandi that sounds miserable. I do feel fortunate that I am just a single guy, no kids. Just a dog and a girlfriend. I am sure I'd be roid raging if I had all of that to deal with! I do live a pretty busy life, but being self employed I can control the pace that I move.

I am, however bracing myself for the <10mg taper. I am seriously considering taking a 2-week vacation when the doc decides to put me there.

I'd be careful about jumping to splenectomy. If it doesn't work, and it doesn't work for lots of folks, you'd be spleenless and with ITP, increasing your risk of illness and decreasing the number of treatment options. Watching and waiting actually turned out to be our best option for quality of life. The rebounds after treatments seemed hard for my teen, and the side effects of IVIG and steroids were worse than just dealing with low, but fairly safe, counts. Decadron pulses once a month work well for some patients, and some had long term remissions after that allowed them to stop treating. For my teen, the crash after the first treatment landed her in the hospital, and we never tried it again. That was about eleven months after her ITP was revealed. After that, however, over the next several months, she rose to safer, higher, then normal counts. She has dipped up and down, but stayed safe and mostly normal for the last 29 months. As for the mathematical formula, forget it. I carried index cards for the first year and a half, on which I wrote every count on every date, including treatment methods, doses, and days duration. I was trying to find the "fix." It isn't there. Our bodies all respond differently, and the same body responds differently on different dates and in different situations. I'm sure that the combination of environment, hormonal fluctuations, body chemistry fluctuations, activity level, and diet all affect what works at different times, but it's really a toss of the dice whether it works or not. As you go through this, you may be a lucky one who finds you can sort of tell when you should have a count. If your counts are mostly safe, you may get to space the counts out more. My teen now gets them only every six months or if we notice a problem.
Norma

Sandi, thanks so much for the detailed examples of treatment experiences, very helpful. And I really feel for what you went through on pred. I have been burning the candle at both ends for work for the last couple of months, coinciding with this ITP adventure, so that probably doesn't help with the side effects. All while keeping professional status quo with clients. So I can relate to what you are saying workwise. Although to be honest the hyperness of the pred actually helped me a bit with the workload in the beginning and the shorter sleep cycles has given me more hours in the day! So I guess there's a bit of a bright side.

Norma, thanks for sharing your thoughts on quality of life.

I think where I am left at the moment is what is the bigger risk/harm on the body...side effects/long term effects from drugs or ITP risks. And there appears to be no clear answers. Obviously I am new to this, so just finding my way.
jane

My local haematologist who deals with the most difficult cases in my area says that ITP often just burns itself out. So you may well not have to live with it for ever.

The question about splenectomy working better under the age of 40 is true. Over 40 the percentages are against and in some the liver seems to take over the eating of platelets either in small or large part and removing the spleen doesn't have any effect. It's also quite likely that the youngsters who have splenectomies will have low counts again later in life. But as with everything in ITP, nobody can guarantee anything and it's just pot luck.

One more thing about splenectomies - there is a lot of newer research out there about the role of the spleen. It's not just part of the immune system that helps prevent illness. It's been found that people who are asplenic tend to have more blood clots and the spleen actually aids in heart attacks. I can find the articles if anyone wants them.

I'd be interested in seeing those articles. Thanks!

Mc, like you my counts dropped between tapers. my last taper was super slow, I went from taking 5 mg 7 days, then 6 days then 5 days ect....
But even with that my counts continued to drop once I finished the taper. I waiting patiently to figure out at what point would my counts finally stablize, and I found for me that plateau at 80, a month later my counts starting going up on their own.

Also, if anyone has already mentioned or if you've noticed that there is delay in platelet drops. You might find that your counts don't drop the day you reduce your dose, rather they'll drop after your body has adjusted to the lower dose. For me I found that delay was about 7 to 10 days.

And one more thing pred induced depression is a funny thing, i found myself crying over the smallest things, things that normally wouldn't make me teary eye had me bawling. I didn't realized I was depressed, I just couldn't stop crying. As an example I was crying watching a reality show.

bloodjournal.hematologylibrary.org/cgi/content/full/114/14/2861

www.uwhealth.org/healthfacts/B_EXTRANET_HEALTH_INFORMATION-FlexMember-Show_Public_HFFY_1104449351975.html

bloodjournal.hematologylibrary.org/cgi/content/full/104/9/2623

www.ncbi.nlm.nih.gov/pubmed/16015423?dopt=Abstract

www.ncbi.nlm.nih.gov/pubmed/18334267

discuss.pdsa.org/topic.asp?TOPIC_ID=25428&SearchTerms=article,splenectomy

www.nytimes.com/2009/08/04/science/04angier.html?_r=2&8dpc

How was your surgery? Any complications? What are your counts now?