Thank you for these forums!!

Hi everyone...So my husband was diagnosed about a month ago after unexplained and severe bruising on his arms. His dad (a nuerologist) did some blood work which revealed a platelet count around 7,000. He went to the ER that night and after another round of bloodwork the count was at 2,000. He had a transfusion and two IVIG treatments. Left the hospital with an extremely high count (146,000). He was started on 90mg prednisone and after 3 weeks of severe headaches and a huge appetite, he found himself with a count back down at 6,000. So off to the ER again for another round of IVIG. Unbeknownst to us at the time, the IVIG was merely a band-aid and the prednisone was suppose to keep the count up, which it obviously failed to do.

So that was about 2 weeks ago that he had the IVIG. His count is up because of it but we know it won't last. His doc wants him to start on the Rituxin treatments. He'll begin that on 4/22 and in the meantime have a dose of RhD tomorrow.

Ok so that is the background on him...now to me. The first few weeks of this I was an absolute basketcase. My husband was always a very healthy guy (32 years old) with barely a bad flu in his medical history. So seeing this come out of nowhere was a reality check to say the least. Part of me was happy he wasn't diagnosed with cancer and part of me scared out of my mind he'd be sick for the rest of his life. I found this website while doing my daily google search for more information. I cannot tell you how much it has helped to hear from other people living (happily & healthy) with this disorder. Luckily there have been no other symptoms then the initial bruising and his main battle has been with the side effects of the steriods (which he is slowly being tapered off of). His attitude has been good but after he found himself in the hospital again he realized this was not going to be cured with a script for prednisone. He is scared he will always be sick, scared this will be a "battle" for him.

His mother calls frequently, anxiety-ridden. I directed her to this site, hoping it would offer her the insight and peace of mind it offered me. I lurked the discussion boards for a while but figured, why not post, share my story and get some feedback. We're keeping our fingers crossed the Rituxin is going to be the treatment that works, although the side effects were scary. My mother (an RN) administers this on a daily basis mainly to rhuematoid arthritis patients. So she is well versed and has assured us to not worry about everything we read... PML (scary!). But when it's one of your own, it's obviously still scary.

Any thoughts, words of encouragement or experience with the RhD and Rituxin would be greatly appreciated. Either way reading the previous posts have calmed my fears. I showed my husband the site but I dont know if he is ready to get involved. I figure I'll post for now for my own sanity. Thanks in advance!

Erin

Hello Erin! I'm so glad you found us and so happy you are relieved. Yes, the majority of people with ITP lead long, productive lives. The worst part is the treatments/side effects, once you get over the anxiety of the disorder. Very few people ever die, even people who do not respond to treatments at all. If there is a response, the risk of death is near zero.

Rituxan is a great treatment that can cause remission of a person has a good response. Your Mom is right about the side effects, most people do very well and it can be easier than Prednisone. I had a year of remission after my first round, and have had six or seven years after my second round (I lost count).

Win-Rho can be temporary (like IVIG), but some people have had responses that last a few months. It's a pretty quick treatment and has few side effects for most, especially if the patient has pre-meds (Benedryl and Tylenol).

ITP may or may not always be a battle, but I never considered myself 'sick', just a person with lower than normal platelets. I was diagnosed in 1998 and have been in and out of remission several times. Even if it is a life long battle, it is not one that necessarily is a problem every single day. You learn to ride the highs and deal with the lows. You find the treatment that works the best with the least side effects - that is different for everyone. You learn to go by the symptoms, not the counts, and you go on with life.

Stick with us and learn, you seem to have learned a lot already - good for you! That is the best defense.

Hi Erin
Glad you found us. Sandi pretty much covered all the bases, that's why she's the admin! And the best one I've seen on the boards I visit too!
I can't speak to the Win-Rho as I have never had it. But I have done Rituxan. The first treatment held me in a safe range for 7+ months, what a relief that was! The second round, I'm not so sure about. Let me explain. I had the treatments over the last 2 weeks of December and first 2 weeks of January. We decided to try it again because I was down to 23. So on February 17 when my counts were down to 6 we concluded that the Rituxan must not have been working. I know it can take up to 12 weeks. But we decided to try IVIg and start Promacta. Even with that my counts were down to 21 on March 14. So I'm even more sure now that the Rituxan wasn't working. But my counts did finally start going up even over 300! Is it the Promacta or the Rituxan? I dunno. Promacta is only supposed to keep you in a safe range, not all the way up to 300+! We've dropped the dosage to 25mg a day and they dropped by 100 in 1 week. I dunno. The CBC had a note on it today that said "Abundant platelets with mixed sized platelet population. Large/Giant platelets present." I'm thinking that's good news, the mixed sized platelets since they start out large and get smaller the older they get. That means that my body must not be destroying them as fast anymore! That's a good thing, which leads me to believe the Rituxan may be working since the Rituxan kills anti-bodies that destroy my platelets and the Promacts causes the bone marrow to produce more. Whew! All that to say............I dunno! Good luck with the Rituxan and I can't wait to see how it goes!

Thank you both so much for your kind words. It's been a couple of weeks and I just wanted to give an update on my husband. He went to the doc last Tuesday expecting to have the WinRho done but his count was above 50k so they told him to come back Friday. By then it dropped to 34k so they gave him the WinRho.Everything seemed to go well but his count isn't going to be checked until tomorrow because this Friday he has his first round of Rituxin. They think they may do a combi of WinRho and Rituxin until they see how he responds.

So right we really know nothing since he hasn't had a count done since right before his WinRho. I found it a little odd they would wait almost a whole week to check his counts since at 34K it could drop quickly if the WinRho wasn't successful.

The main issue he's been dealing with is the headaches. He was having mild headaches after the IVIG treatments and while on the steriods. As of Saturday night he was officially off the prednisone. But Sunday his headache was so bad he slept most of the afternoon. Monday it was hurting but he was ok (unless he was just putting on a brave face since we were at his family's house for Passover). Yesterday was pretty bad. He worked half a day, came home and slept most of the afternoon. He woke up this morning still with the headache, afraid it would get worse as the day went on. Tylenol doesn't really seem to work. His Dad (the nuerologist) is having him do an MRV on Saturday to make sure his blood is flowing correctly in his brain. The CT scan he had in the hospital a few weeks ago was fine but apparently this will take a closer look at what's going on. I was thinking the headaches got so bad because of the WinRho done on Friday. Headaches seem to be a common side effect to all these medicines and I'm hoping that's all it is.

I really don't know if I can handle him having something wrong in his brain. I'm trying to be strong but it seems like it's something else every day. I try not to voice my concerns with him because it'll just cause him to be more anxious. So that is why I am turning here. Plus I just found out that doctors recommend not getting pregnant up to a year from your last Rituxin treatment. Considering we were hoping to start trying in a few months, this was yet another kink in our plans. I know I'm not someone living with ITP but you guys have made me feel better and I just can't burden him with my fears.

So keep your fingers crossed the count he gets tomorrow is good, the Rituxin treatment on Friday goes without incident and the brain scan on Saturday goes well! Oh and we are also hosting our first Easter dinner on Sunday with 27 family members so to say there is a lot on my plate right now would be an understatement! Anyone have these experiences with the headaches like this??

Hi Eappel!
I have been getting relatively frequent headaches since this whole thing started (Dec. 23rd). Tylenol takes the edge off. I have learned to drink lots of water and just keep going. I will wear sunglasses at home sometimes and have only one set of lights on at school. Florescent lights can aggravate a headache for me. I try not to read so much too. Other than that i'm usually feeling fine! I mean really good. The anxiety about this condition is really the worst part of it. And THAT might be the reason for my headaches, really. Because the anxiety can get pretty bad, especially if your husband was very healthy before he got itp. My thoughts are with you. Hang in there.
Terrie

Most of the treatments can cause headaches, and the side effects from Prednisone can last even when a person is off of it.

It's also possible that he's having stress headaches. I think those are often overlooked as a possible cause. Dealing with all of this can certainly cause stress and the body can suffer a lot from that.

Will they still do Rituxan if WinRho had brought his count up good? Predisone put me in a "remission" [decent count, no treatment] for a number of years - after a tetanus booster dropped my count WinRho put me another "remission" and I haven't had to treat in almost 9 years.

I would be surprised if there is something wrong with your husband's brain - he has a neurologist for a father so......

Erin you mentioned your husband being sick - I don't look at myself as "sick" because I'm not sick, just have a screwy immune system that decided to coat my platelets which then causes them to be looked at as foreign and needing to be destroyed. Also I don't consider ITP a disease, I'm not "diseased"

We moved to Tokyo a couple months after my diagnosis - wasn't going to miss that opportunity.

You also said: " I know I'm not someone living with ITP" - yes you are, your husband may have it but are living with it too. You belong here!

My best to your husband and you!

Thanks for the responses everyone! Last night was a tough night. Luckily the brain scan came back normal so we have to assume the headaches are from the meds. Unfortunately from the time I picked him up at work to the time we got home from the doctor he got progressively worse. He took some migraine medicine which did nothing and he spent the next 4 hours in so much pain, feeling sick to his stomach...I felt so horrible for him. Around 10pm we considered taking him to the ER just to relieve some of the pain he had been feeling the last 12 hours but he refused. So I just sat with him in a dark room until he FINALLY fell asleep. He slept for about an hour and woke up and it was starting to get better. I barely slept that night though, it is so damn hard to watch someone you love in that kind of pain and you have no way to help.

Anyway he woke up this morning feeling much better. Back to the doc for a blood count. The day before the WinRho: 34k and today 41k. So we're happy with the increase! Doc said it might have been able to be more had it not been from the stress from the day before. They still plan to start the Rituxin tomorrow and will monitor the headaches closely. It's a side effect to everything but apparently migraines run in the family so it might be a little worse for him. I just pray he doesn't have another night like that for a while!

So, again, thank you for the support and please keep your fingers crossed for us. He is still insisting we host Easter dinner as planned. I don't think he is ready to start changing his life bc of this if he doesn't have to so as long as he's ok with it we're going ahead. I hope everyone has a great weekend!

Hello Erin,
my heart goes out to you. My husband was diagnosed in Sept. 2010. I know exactly what you are going through. Like Melinda said, we are living with ITP,too because we love our husband and it is so hard to see him go through this and most of all the fears of the not knowing. This forum has helped me so much too. I am glad you found it.Sometimes I feel like it is harder on me (well I guess I am making it harder on myself), because I think about his platelets more than he does. Today Marty is having his monthly platelet check and I am trying to stay calm.
Marty had Rituxan in Jan.2011 (after roller coaster rides with steroids). The infusions went well, he did have a bit of an reaction couple of times, they stopped the infusion for a while than continued with a slower drip, than he was okay. Since his Rituxan, Marty's platelets have been in a normal range. We are so thankful.
Erin, I sure hope everything is going well today for your husbands first infusion and for you too. For me and Marty it was a very humbling experience to sit in the oncology infusion clinic seeing others getting chemo therapy. We are thankful it is "only" ITP.
Thank you for sharing your story, it sure helps me...............I always though ...maybe I am overreacting....
Have a happy, fun, joyful Easter gathering.

Erin, the process of determining ITP is scary as we tend to anticipate the worst - at least I did. But to be honest my biggest concern was for my wife - the what if! I hope and encourage you and your spouse to talk, share and tackle this disorder together. I held back for a few months before I would admit my fears but once we talked, handling ITP mentally and emotionally was easier (not easy, but easier )

Know my prayers are with you. Try to encourage your husband to join us and post. He'll soon find ITP isn't the killer the MD's often frighten us with. Yes it's serious and scary but there are numerous people who live with very low counts. It's something to watch and monitor but not necessarily something to live in fear of.

Erin, Welcome. Sorry you find yourself in need of this site, but it has been a sanity saver for me as a mom of a teenage ITP patient.

Headaches: Some folks here have noticed a connection between ITP and migraine. My daughter was prone to migraines long before the ITP diagnosis, but I have them, too, and my sister has seizures triggered by many of the same factors that trigger my migraines (fluorescent lighting can be awful). My daughter's migraines surfaced around six years old, then stopped after a couple years. Later, at almost 13, she was diagnosed with ITP. She also was prone to anxiety from an early age.

Treatment/lifestyle: My daughter had one really stressful year with ITP before starting her remission. IVIG helped her reach a safe count, but we always knew it was not a "cure." Eventually, the patient and doctor learn what the patient can tolerate. Some here never treat. She had IVIG three times and tried one "pulse" of decadron. Her first IVIG was soon after her first low count, when her count was below 20. The second was done when her count was 3. (She looked great, and we had believed she would have a good count that day.) She generally tolerated counts as low as 13 without treatment, but we tried decadron pulses so she could resume sports. (She loved volleyball, but missed a season for low counts. She could do mild tennis if over 25.) The decadron got her counts up to 50, but as soon as the dosage stopped, she dropped rapidly to 15, and didn't tolerate the rapid drop. She ended up with a severe nosebleed, lost a pint or so, and had to have IVIG for the third time. Each IVIG was inpatient. She was hospitalized three times for IVIG, and one time for side effects (aseptic meningitis after the first treatment) in the first year. I thought I would go crazy, crying alone at the wheel of the car because I kept up a positive front while she was around. After that, she miraculously started climbing on her own. She now runs low normal to near normal counts always, but we never get cleared to go more than six months between counts. She has been running consistently safe counts without treatment for over three years now. (Still, every time the count is lower than normal, or lower than last time, I am discouraged for a brief while. I will never totally get beyond ITP, and will always be on guard for a relapse. Every odd bruise is questioned.) ITP can be managed for a good life, and the patient can find ways to adapt and live fully. Risks must be appreciated and heeded, but they can be dealt with. Remissions do happen, spontaneously and after treatments. There are a number of good articles in Blood magazine, which can be accessed from here I think. If not, google should work to find it. I found the remission studies to be encouraging. I also encouraged my daughter to keep the rest of her health up, by eating right, taking a good multivitamin, and getting enough sleep. My thoughts were that, if she had a crisis due to the ITP, a healthy body would withstand better than a poorly nourished, poorly rested one. Also, while we never found extra vitamin C to help with counts, it does seem to help with vessel integrity, cutting down on bruises and nosebleeds.

Hope your hubby soon has a lifelong remission. Until then, know that it can be managed.
Norma

Erin, If you click on the products and publications tab, then click on the link to Blood journal, the April 2011 issue is available online and has a really great article on the updated treatment guidelines developed by the International Working Group. It has really interesting information on studies and treatment recommendations.
Norma

I searched through out the "products and publications" tab and couldn't find the link to Blood Journal. I'm interested to see it. I just cant find it. So, I googled it and found it. Holy Cow, it is dry reading to say the least. Full of info but hard to wade through.

One thing I've noticed is that the authors in Blood Journal do seem to like their puns, a lot of article titles are wordplay, I guess funny at hematologist cocktail parties.
Erica

www.bloodjournal.org

Well my comment about puns is not supported by the recent articles!
Erica

To say the least...

The new guidelines are..

bloodjournal.hematologylibrary.org/content/115/2/168.full