Recently diagnosed, and feeling lost & confused

Hello Everyone,

My name is Corey. I live in Washington state. I decided to pursue engineering. Flash forward a few short years, and I graduated this June with a B.S. in software engineering. I was diagnosed with ITP, almost 2 months earlier. Which almost derailed my progress. My platelets have been consistently @ 30,000. I have a sneaking suspicion I had the ITP for a year prior. Oh, I really have no symptoms other than 2-3 small blood spots on my skin that last no more than 2 days. They're usually around my shoulder area. No other bleeding.

I put off steroids as I hate medications. I have decided to try Dexamethasone. Originally the hematologist said 3 treatments over the course of 3 months. With treatments lasting 4 days. However, when I started, she said 6 treatments every 2 weeks. Someone got the sound waves mixed somewhere. The first treatment the platelets came up to 175,000 but then dropped back down to 30,000 when I came back in the following 2 weeks. Treatment #2 after 2 weeks the platelets are @ 40,000. Coming off the steroids I have been very sick and fatigued. To the point where I am a zombie. I cant even function. I would say I am fine 3-5 days out of 14 days. I don't know if this is normal. My hematologist started talking about rituximab infusion in congruence with the Dexamethasone. I had asked her could I die? she said no. So, I said lets try it. I am scheduled to go in and get it done in 2 weeks. The hematologist is seeing if it can get approved in the meantime. However, I looked up the side effects, and I feel like its not worth the risk. I don't know it sounds scary. Death and a incurable brain disease is enough to frighten me.She also brought up splenectomy once again. This sounds like a better route to take that the rituximab.

Anyways, I will be going on treatment #3 tomorrow. I am not optimistic that this will even help. The reason why I decided to try it was because my Hematologist said there is a 70% chance i could be cured for life. With my research I never thought this was true. She also said that I am right at where they really don't have to do anything if I don't want to. I am thinking that i should finish the steroid, and see where they are at. Then, just live with the 30,000 until something serious happens, and then consider a splenectomy if need be.

I wanted to reach out to other ITP people, and see what they thought of rituximab. If its safe. Did they get really sick during steroid treatments? Is that 70% cure rate complete garbage? Am I wasting my time with the steroids? other issues you see with my story? I just need some support.

I also blew a good job opportunity because I couldn't think from the steroids. Now, I barely feel good enough to look. So, now I am losing hope at having a decent life. I need to get a job. I do not know what to do anymore. I feel like dying. Do people with ITP hold regular jobs?

Thank you. I appreciate any response.

Welcome Corey,

We all have our own "comfort zone" at 30k I am on the watch mode, however I have done the dreaded prednisone and Rituximab in 2009 and it gave me a 18 month reprieve. There is a lot of research to suggest that Rituximab and Dex pulse together may have a better success rate - you can read several threads here that discuss it.

There can be side effects and you are right to weigh the cost/benefit and make an educated decision. I reacted to the first treatment - was treated for the reaction - then they slowed the drip and finished. I was pre-treated for the reaction for the three remaining treatments and did fine with a very slow drip (8 hours each time).

By the way, I am also in Washington - Terry Gernsheimer, MD, Puget Sound Blood Center Seattle, WA (an Adviser from this site is my Hemo - she is GREAT!!!) She was my second opinion Dr. after the first couple years with a not so good Hemo - I am very glad to have her as my primary Hemo now!

I am sure there are others here who can give you their experience with Rituximab as well and a second opinion is always worth it when it comes to treating ITP - in my opinion.

Cindy Ann

Hi Cindy,

Thank you for responding to me. It sounds like to me Rituximab did not help you. How long have you been @30k? Are you living a normal life(aside from restricting some activities), and just get regular checkups?

I was thinking about a second opinion. I live in Vancouver, WA, otherwise I would check out your hematologist.

First of all, let me say that ITP seems to disrupt life at the beginning, but it does not stay that way. In time, you learn ways to manage it that fit into your life. I kept working through everything, only missing work on the days I had Rituxan infusions. Worked through steroids, counts under 5, Win-Rho treatments, rarely missed work. You will manage it too.

Dex is a very tough treatment and very few people finish the entire 6 month protocol. It actually is supposed to be 40 mg's for four days, once a month for six months. Research does dictate a high success rate, but I have not seen that here. The studies also say that it is well-tolerated, but I do not believe that for a minute. Most people have the problems that you describe.

Newer research is showing that Rituxan in addition to Dex has a promising outcome and can induce remission. Not many have actually done that here, so I don't know how accurate that is. The side effects from Rituxan sound horribly scary, but most people come through it just fine. Death is very rare and usually only happens to people who have other serious health issues or who are immunosuppressed. The infusions themselves are usually uneventful.

If you do not have many symptoms, you do have the option of watching and waiting. It's good to have a plan in place though if you would need to treat. Rituxan can take 4 to 12 weeks (sometimes longer) to see a response, so that will not be a quick fix. If you do Dex along with it, that might help.

You are smart to think this all through and read about it. Many people go into it blindly and are surprised when something happens. Splenectomy has many drawbacks and problems that can go with it, so 'just getting it out' is not often the fix it solution that it can appear to be. It is becoming less of a treatment option as time goes by. They rarely even do them in the UK anymore and hopefully, the US will follow. There are other options to look into also.

Hi Corey,
I think the majority of us hold regular jobs, some are retired, a minority on disability and often that is due to other illnesses in combination with ITP.
I've been in remission from Rituxan for over 5 years now.
I would not do the splenectomy except as a very last resort, but we've all got to weigh things for ourselves.
Erica

The hematologist has me doing 6 treatments. Taking the meds for 4 days every 2 weeks for however long the 6 treatments are. I think a little over 2 months total. Initially she said 4 days every month. However, she said that since the numbers crashed so fast I could do it every 2 weeks. Doesnt the steroid treatment make me immunosuppressed? How can i take them together?

I have not read that protocol. I have seen different doctors use atypical methods when it comes to Dex. Most people do crash like that after a Dex pulse, so I'm not quite sure what the point of that torture is. I've never had Dex, but have had Prednisone plenty of times, both high dose and low dose.

Yes, Dex can cause immunosuppression but that's not quite what I'm talking about. I'm talking about someone who has maybe had a splenectomy, been on steroids or chemo for a long time and then Rituxan on top of it. I know of one death from that combination, but most who use steroids with Rituxan do okay. It's fairly common.

I think Rituxan has it's place in the treatment line-up and it has worked for many people. But I also think that it often does not get the respect it deserves and is over-used at times in certain situations. I am a rare one that had problems from Rituxan (Erica too) and we can never use it again. Erica and I both have Lupus though and we tend to have problems with many meds.

I have been in the 30k-40k zone for a little over a year without treatment.

I do feel that the Rituxan worked - 18 months was nice without worries - I could have it again but prefer not to treat unless absolutly nessassary.

I don't mountain climb or juggle chainsaws but I do live a pretty normal life as far as ITP goes. I bruise easy and always have petichia but have never had a "bleed". I monitor counts about every month or so and keep in touch with my hemo mostly by e-mail.

I do respond to prednisone should I need an emergency treatment but prefer not to if I don't HAVE to.

I live in Montesano (about three hours away from my Hemo - it is worth the drive to see her just once a year)

RItuxan didn't work for me, but it didn't cause me any discomfort either.

I've never tried any steroids but prednisone, but a low dose of pred. usually maintains my platelets at a safe level. However, some of us think that 30 is a safe level. I think some hematologists prescribe too large a dose of steroids, esp. to start.

I've never been into extreme or contact sports, but I haven't felt that, in general, ITP has limited me much in my life. I wish I had back the hours I've spent on getting CBC's in the lab, but that's not a big thing. If you don't have bleeding problems at 30, you're probably going to be able to continue your life as you've been leading it.

I am scared to try Rituxan. Not because it may not work because it may kill me or cause a brain disease. Should I be concerned? I am thinking at this point that once i am done with the steroid #6 treatment I will just live with 30,000 and call it good. How long have you guys had ITP? I am just sure what to expect in the future. Will I die young? Or can I live 40 more years?

People rarely ever die from ITP, so I'd say your chances of a normal life span are very good. I was diagnosed in 1998 and struggled with up and down counts until 2004. I got a remission then and it's lasted 10 years.

As long as you respond to treatments and are not chronic refractory, you don't have to worry. Even the people here who live with constant low counts do pretty well. There are enough treatment options around now to help just about everyone.

Your plan of not treating at 30k is fine, but what if you drop lower? You might want to think of an alternative plan although some people do choose not to treat even at low numbers.

If you are afraid of Rituxan, then don't do it. I've never had anyone here report death or PML from Rituxan, so I'm sure it is very, very rare and certainly not in an otherwise healthy person. I've been here for a very long time, since before Rituxan was even used as a treatment.

Sandi wrote:
As long as you respond to treatments and are not chronic refractory, you don't have to worry. Even the people here who live with constant low counts do pretty well.

I am scheduled to get it in about 2 weeks, so I have time to decide what to do. Are you saying we have to stay on steroids the rest of our lives? Dex is the first medication I have tried. I did respond, and as soon as i was done it shot back down. I dont want to stay on it very long as I can barely have a life. What about the thinning of the skin from the steroids? I know someone thats got that and has major problems with it. I dont know how long shes been on them. I dont know what I will do if it they dip lower than 30,000. I want my spleen. Like i said i cant handle the negative effects of steroids. i wouldnt be able to hold a job. I get that sick. What is chronic refractory? I am not sure if i can have a plan? I have no fatigue other than the steroids. I have no bleeding. I rarely get blood spots. If i do its one or two at a time.

I was diagnosed in 2000, and one of the first things I asked my hematologist was if people with ITP had normal life spans. "Absolutely," he said.

Just my opinion from my 8 years with ITP: I would never do treatments at 30K if there was no bleeding. My hemo is a well-respected cancer research doctor in the San Francisco area. He looks at symptoms and would agree that if there wasn't bleeding, its fine to just watch and monitor the counts. It seems to me that the doctors with the MOST experience with ITP are the LEAST aggressive with treatments.

Dexamethasone is horrible!! Yes, you are right to feel awful. I tried to do one round but couldn't stand 40mg so did half dose, 4days of 20mg. I was miserable- couldn't sleep, and nearly psychotic hearing things. Then on the 5th day I was really depressed, everything looked dark. It took a while to recover. I swore I'd never do it again, it seemed so hard on my body. And for what? counts went up then crashed back down- was NOt worth it! 70% remission??- LOL I really hope it works for you, but I doubt that statistic.

When I first was diagnosed with ITP, I read the Mayo Clinic website's warning that the treatments for ITP can be worse than the disorder. So true. Good for you, you're doing your research. There are many ways to go with ITP and no one way works for everyone. I try to keep my counts above 20K, but they've been below 10K many times. I had to learn to trust that I was okay with lower counts, that took time.

Great that you have your degree. Try not to worry, just watch out for over-treating ITP. Smart to avoid job interviews. I went for a job interview on 60mg of prednisone and it was a disaster! I was sweating and trembling. There were 3 people interviewing me at once firing questions- I couldn't think at all- the worst interview ever! haha funny now but at the time it was very discouraging. good luck!

You know I am not the one to want to go with medications. I have been a vegetarian / vegan for over 13 years. I have eaten fairly good during that time. I havent always been perfect. I did tons of juicing and blending over the years. Anyways, I am just ready to say forget it all. I hate the "dex" and what it does to me. I don't think I am going to try the Rituxan. I am scared to death of medications.

I also have a lipoma on my shoulder that needs to be removed. They wont be able to do the surgery unless my platelets are 50k+. The doctors said I would need a blood transfusion. I am scared of getting HIV and HEP C so I said no. Instead, I decided to try to do the steroids and maybe take a chance at that 70% remission for life and surgery for the lump. Kill two birds with one stone. I am suppose to go back on the meds tomorrow. I dont know If i can handle it again. Thats why my doc started talking about a splenectomy. I feel like now that I am almost halfway done shouldn't I finish? I just want to die and be done with it. I appreciate you guys talking to me. I feel so alone out here.

Hi Corey,
Glad you are sharing with us & rest assured you will receive lots of support.
I have had ITP for 10 years, fortunately few issues, count averages 30, a couple of nose bleeds.
Steroids 2x were the pits - I turned into a monster! I steadfastly refuse to have my spleen removed.

Earlier this year I had to have a colonoscopy, so had IVIG prior to get my counts up for the procedure. All went well apart from a brief reaction to the plasma. BUT I continue to live my life without treatment. After a while you stop worrying, know your own body & trust your instincts. I don't for a moment doubt the seriousness of ITP but I won't let it ruin my life either.

I hope you are feeling better soon.
Cheers from Down Under,
mj

Corey:

I know that things seem hopeless right now, but it will get better. You will not be on steroids for the rest of your life. Eventually, everyone finds a way to manage ITP so they can live normally. Most doctors begin with steroids as a first line treatment. If that doesn't work, they move on to something else. You can take this time to sort through treatments and make decisions about what might work for you. If your doctor doesn't agree, find another doctor. Their job is to present all options, not to push you into things that you don't want to do.

I know Dex is making you feel nuts and that might affect your ability to rationalize and think coherently. Just try to breathe and stay calm. This is a bump in the road and it will change.

As for thinning of the skin, that usually only happens after a very long time. I've been on and off of Prednisone since 1998 and on it constantly since 2005 (not for ITP) and just started having problems a year or two ago. It is not a good long term treatment for ITP and very few people do use it that way (although there are a few).

You will get through this and a year from now (or sooner), this will all just be a bad memory. You do not have to finish the Dex. It's your choice whether you believe that or not. No one should have to feel that miserable. You do not have to have a platelet transfusion at this point nor do you have to do Rituxan. You might however, have to choose some treatment if need be, so when you are having a calm moment, start asking and reading about other options.

As for the surgery, 50k is not an unattainable goal for you and it shouldn't be that difficult to get there. The timing is the part that can be hard, but with some work between scheduling it and treating, you can work it out.

I hear your concerns. Most of them are my own.
Even though I'm old enough to be your mother, you and I feel much the same way about ITP and its treatments. In July, I at first agreed to Rituxan so I could stop taking the prednisone I'd been taking for almost a year. Just as I was within a hare's breath of being approved for Rituxan by my insurer, I changed my mind about it. My health lifestyle isn't as strict as yours, but anything with a black box warning on the label isn't something I'll take lightly. Plus, I know from life experience that side effects and medical errors don't always happen to the other guy.
Logic tells me that the rarest of complications are extremely unlikely to happen to anyone, much less me. It's another thing to actually agree to start that drip into my own vein!

I've been at this for 6 years. For 4 1/2 years of that time, I've been treatment free. My MD only insists on treating if my count goes below 10. The past year has been rough, though. The medium dose of prednisone that once worked well isn't holding the count above 10 anymore. After refusing the Rituxan, I reluctantly decided to start on NPlate. So far, it's working with absolutely no side effects - yet. (I know that can change; it's still early.)

You also will eventually find your own ITP path. Once you're off the steroid and can think straight again, you'll figure it out.

My best advice... Keep reading here, in the forum and the general website information. It's helped me more than I can say.

I appreciate everyones reply. Its really helping me hearing from people with ITP and haring their experiences with me. I appreciate it more than you can imagine.I think i have decided to refuse the Ritumixab for now. Until something serious happens down the road. I would like to get my counts above 50K so I can get that surgery. What can you tell me about IVIG? What effects have you felt? Is their risks of HIV? I am thinking about that instead of a blood transfusion. I would really like this lump removed before i go to work. Thank you.

Re IVIG. I've had it twice - once for a severe nose bleed & then to get counts up for a medical procedure. Both times I suffered bad headaches, shivers & shakes for a day. It has to be administered VERY slowly. My count went up over 100 & gradually went down over several weeks. I prefer it to being on steroids any day!!

As with all things ITP - it is not suitable for everyone & not everyone's counts stay up for long. Another option for you to consider & discuss with care giver.
mj