From Maui to the Hospital

Greetings everyone. First I wanted to thank everyone for posting your experiences with ITP and treatments. You have no idea how comforting it is to us to read about this disease from those who are going thru it. Really, Thank You.

Our Story

Two weeks ago my wife and I took a trip to celebrate our 20th year wedding anniversary to Maui. It was our first trip to Maui or anywhere like that. We were lovin' it.

The first indicator something might be wrong was some pretty decent size bruises that my wife had noticed on her legs 3 of them, which we passed off as having to have happened during our travel. We had no cause for concern at this point. Well those 3 bruises grew to many and somewhere in the middle of our trip my wife stopped counting at 30+ bruises that seemed to just appear. To the touch they didn't seem sore like the bruises she could confirm the cause of i.e. from an impact with something, we had been going at a pretty good pace up until this point surfing, snorkeling and taking in the sites.

By this point I was concerned but not alarmed, I just figured that she may be having some sort of issue but had no idea that it in anyway could be this serious. So common sense told me until we could get this checked out we should scale back our pace and relax on the beach more. Pretty horrible huh? We were in Maui for 10 days.

When we arrived home we were both concerned and she made a call to her Dr. to come in and discuss the bruises. After a Dr. visit and a blood draw the Dr. reassured her that the bruising very rarely amounts to anything and to be calm and she would call us with the test results. The next morning at 6am the phone starts ringing, it was the Dr. office telling her to head straight for the hospital and that her plt count was at 4 and that she was at risk for "spontaneous bleeding" the wording seemed odd to us and we in no way thought it could be possibly accurate.

So after a quick double transfusion some prednisone (80mg) and a follow up appointment scheduled for the next morning we were sent on our way. After reading about all the possible things that a low platelet count could mean we settled in for a sleepless night. The next CBC showed she had gone from 4 to 7 and again we were sent off to the Hospital for another round of transfusions and IVIG. They didn't let us go home this time, the next test showed she had gone from 7 to 56 and in 18 hrs back down to 32. The next day she had gone from 32 to 56 and we were sent home.

So in a nutshell that's been our journey so far over the last two weeks, from carefree to panic to shock, it's been quite the ride. So now we are educating ourselves about ITP and what it's going to mean and how we are going to manage it moving forward. There are lot's of other things going thru my head and I could probably type for hours but I'm sure you all have your own stories and I don't want to bore you to death with ours.

Sorry for rambling on there's just a lot to digest. Like I said at the beginning of this rather drawn out post, Thank You. Finding this site has put a face/faces to what we are going thru and it helps alleviate some of the fears and answer some of the questions we've just started to ask. It's very comforting to realize we're not alone as we begin our ITP journey.

Sincerely,
Jason & Annie

What are your transfusions of? If they are IVIG, makes some sense. If they are platelets, that is not a good practice.

I'd suggest a) you get a hemo specialist who knows ITP and b) you read everything on the PDSA website and the discussion boards.

There are lots of treatment options and we can see your wife already responds to some treatments.
Erica

eklein,

they were both platelets, please tell me more about it not being "good practice" and if possible where to do research on that topic. We are both so new to this any help or suggestions will be very appreciated.

Jason

Hi Jason - welcome to the group!

Platelet transfusions are usually used when bleeding is present or if surgery is required. It's not used as a treatment because it doesn't work well for ITP patients. The platelets just get destroyed almost as quickly as they go in. People can become refractory to or allergic to transfusions, so it is bet to save them for an emergency situation. Low counts do not necessarily = an emergency.

It's good to have a knowledgeable hematologist because believe it or not, they are not all up on current treatments. Some hematologists still use only three treatments: IVIG, Prednisone and splenectomy. Treatments have come a long way in the past 15 years and there are a lot of options to try.

ITP is rarely fatal, so try not to worry. If a patient is being monitored and treated, they should be fine. The treatments can be hard sometimes but mostly, ITP is a pain in the butt. It is a shock at first, but it is manageable and many people attain remission in time.

Hi Jason & Annie,
Welcome. I live Down Under & am one of the many who have found knowledge, support & encouragement here. May I suggest - take it steady, learn & grow in confidence & know you have support here. There are a whole lot worse health issues & ITP is manageable.
Best wishes,
mj

Welcome to the site!

I too came to this site when I was 29. This year I turn 47 and I still rely on the this site.

I make the same statement to everyone. Research research research learn as much as you can so when your talking with doctors you not only understand but can make informed choices. knowledge is power!

ITP is scary at first but after a while it tends to become a pain in the butt!

Hi Jason & Annie,

I remember how scary it was when I was first diagnosed 14 years ago now, and I understand what you're going through. I was 19 at the time I got sick and felt like my world came crashing down. I have tried most of the treatments offered and after having had a 5 year "vacation" from any treatment, I returned and have been using this site, which has definitely helped me out. I've familiarized myself with many approaches and found what works best for me. Sometimes doctors don't always know the "right" way. It is very important to educate yourself with all possible treatments, as well as becoming truly familiar with your body and how it responds. A low stress environment is ideal, and taking time to rest helps, a lot. I believe this in dealing with many chronic illnesses. Stress only exacerbates things. One of the most important things I have also found in dealing with having ITP, is how important it is to have the emotional support along with the good medical care. I know if I didn't have my family I wouldn't be here.

I also found this last year and its pretty interesting for those of us living with chronic illness and for others to understand.
www.npr.org/2013/04/11/176688401/living-with-chronic-pain-in-the-kingdom-of-the-sick

Thanks everyone for your words of encouragement it's definitely been a roller coaster this past week. I am sooo on board with everyone saying that educating yourself is of paramount importance and I've certainly been doing my share of reading.

This site has been great for being able to hear from others their journeys with ITP and being able to piece together what our future might look like. When we were first diagnosed I did what anyone hearing this type of news would do and I fired up Google and read, my heart sank and sank some more. The internet can be a wonderful tool for educating yourself but it can also be a very scary tool if you don't have the ability to put things in perspective and this site has been a great help in putting things in perspective.

My wonderful wife is a champ, I can't say enough about her, really.

Hi Jason and Annie,

What you say about the internet is so true! More than once, I have gone off the deep end of internet diagnosis, and been pulled back in by Sandi and other good folks here on this website. I think it was Confucius who said, the knowledge of the internet must be tempered with the wisdom of experience.

Jason, there are many caregivers (for lack of a better term) on this site: parents, spouses, siblings and friends. Like you, I am the husband of a wife with ITP. I think as caregivers we have some special issues, like how to be supportive without being overprotective or dis-empowering. Ellen is happy to have me do all of the internet research; this helps to free her from worry and stress, which are not good for her platelet counts. I must be careful to present to her both sides of every option, and not to impose my opinions on her. I have strong opinions, so it's a fine line to walk!

The roller coaster aspect will diminish with time, knowledge, and experience. Platelets will come and go, and a new normal will emerge, usually not all that different than the old normal.

Jason:

One thing that I need to point out is that there are some really inaccurate articles on the internet about ITP. Some of them are old and very outdated. You can trust anything that you find here under "New Articles" and anything from Bloodjournal.com. Of course there are others too that can be trusted, but I can't possibly list them all.

This is all happening too fast. This can't be right!

Please Help I haven't had much of a chance to process my wife's newly diagnose ITP let alone been able to process the different treatment options available. To date w/in the course of ±week we've had 2 double Platelet transfusions, 80mg Prednisone/day, IVIG. Other than the ITP she's a healthy 40 year old mother of 2.

Now today ±1wk post IVIG after having only a transient response to the IVIG (53 post IVIG to 17) we're being told that there is basically only three options available to us, WinRho, Ritumab, and Spleenectomy, pick one. Wait, What?

As far as we're concerned the Spleenectomy is our absolute last option and even then it's probably going to be a "No". Correct me if I'm wrong here but it doesn't seem like this Hemo is very up on the latest and greatest treatments if she thinks these are our only options? With all that being said & based on what I have read and the advice I have already received here the Hemo isn't going to be a "good fit"

Ugh how does one even get a new Hemo, do we have to talk to the PCP and request it?

How do we go about finding a Hemo that specializes in ITP?


Has anyone watched the movie "A Beautiful Mind"? My notebook/journal so far doesn't reflect a beautiful mind, not even a little.

Hi Murray,
How you get a hemo with good ITP knowledge depends on your insurance plus your location. On my plan for example, I can call a specialist and make an appointment directly if they will do that.

You can ask your current doctor 'what about the TPO drugs nPlate and Promacta?' And also read the articles that Sandi posts in this forum - they are the best of the best. Also read the treatment page on PDSA.org.

WinRho and Rituxan are two good options. So are the TPOs. Many of us here prefer to keep splenectomy as a last resort.

I know what you mean, trying to see the patterns in all the tidal wave of data.
Erica

Hey Mur, breathe. It's going to be okay. It can be overwhelming at first. I know it seems like you have lots of treatment decisions and that is intimidating, but it's actually good. When I was diagnosed 16 years ago, I had a lot fewer choices. ITP has come a long way.

Let me tell you this first: it might be worth giving Win-Rho a shot to see if it works. It can be a good option for some. It doesn't take all that long and many people have few side effects. I used to get the treatment on my lunch hour and go back to work. I felt a little flu-like, but I took a Tylenol and was fine. The response can last weeks or months if a person responds to it. The main thing is: You can't use it after splenectomy so if you're going to consider it, do it now.

Rituxan is a much more toxic treatment and if a person responds, it can last months or years. Most people have few side effects with this one also. It is a series of four weekly, 6 hour treatments.

You also have the options of the TPO's (N-Plate and Pomacta). These are newer drugs, but many people here have used them. If your Hemo is not familiar with them then yes, time for a new doctor.

Some people have had to doctor shop and it can take a while to find one that you are comfortable with. Try this - start a new thread and ask around. Give us your area, someone here may know of a good one to refer you to. And as Erica said, read. The newest, most accurate articles are posted here.

AH to breath, Yes Sandi you are right, I'm just a mess seeing my wife hurting and not being able to "fix" it. She is starting to drop again the few signs that she does get were all there last night. Did I mention I'm a wreck, this disease is so confusing I guess I just hit the "panic" button with our last Hemo apt. I keep reminding myself it's a marathon not a sprint but that mentality is counterintuitive to who I am. I'm learning, slowly.

We have a WinRho apt. today after a CBC which I fear is going to tell us what we are suspecting that she's probably pretty close to single digits again. The constant headaches are getting to her, she hasn't been able to sleep much ugh. I just pray for something that can give her some numbers where we can have a chance to catch our breath and process.

Thanks for the "ground check" Sandi, It'll be ok I know. Thanks for the support.

Praying for good things.
Jason

Headaches are not a typical symptom of low counts and there can be other reasons for that which should be considered. Of course a brain bleed would cause a headache, but that is a sudden onset horrible headache that can cause stroke-like symptoms pretty quickly.

It's normal to panic at the beginning; I think we all have. It seems that the doctors sometimes set the tone and if they seem scared, it flows over onto the patient. Luckily, my doctor was always calm and encouraged me to keep doing my normal routine and stop worrying so much. It takes time to trust that mind-set. Of course you still have to deal with it, but you get out of the "sprint" way of thinking.

ITP is not a quick fix disorder and there can be many ups and downs before you can find stability. Stability for many does not end up being counts over 150k. It can mean settling for a safe count which is generally anything over 20k.

Good luck with Win-Rho. It either works or it doesn't. If it does, the count will peak around 7 days after the treatment. Hopefully, the Dr. knows to pre-medicate, some do not.

Hi Murray,
It's a long shot, but when my counts are low I have no tolerance for alcohol, and if I drink at all I get headaches.
Erica

Hi Jason,

What city are you in? Is there a teaching hospital? How did the WinRho treatment go?

I had WinRho about 20 times over a period of maybe 4 years. I never had a problem with the treatments and never needed pre-meds. The treatments boosted me from very low numbers up to 300-400K and then I'd slowly meander down to low numbers again.

I wish I'd seen this thread earlier....there are some treatment options to ask for that can minimize the chance of side effects. I won't overload you with them now since presumably the treatment has already been given.

Although WinRho is considered a temporary treatment, sometimes a person just needs that temporary boost until ITP burns itself out or otherwise resolves. I was diagnosed in 2001, have not had any treatment since 2008, and spent several years off treatment and in the 80-120K range. I'm a little lower than that now (40s mostly), but I hardly ever even think about platetlets anymore.

Keep researching and keep asking questions! Tamar

Well we backed out of the treatment, there was some confusion about premedications or no premeds. It didn't really instill a lot of confidence, so we asked to see her CBC and she'd gone up from 17 to 25. She is just starting to feel a bit better from a nasty cold she also caught in the last week so we figured since she was above 20, asymptomatic, and possibly showing increasing #'s we elected to stop throwing more drugs on the pile. At least for the weekend, maybe my girl is just getting offto a slow rebound. At least that's what we're choosing to believe tonight.

Murray,

Good news that the count is going up, and also good for you/your wife not to feel pressured to go ahead with a treatment you weren't comfortable with!

My count always drops with a cold...and rebounds on its own. Everyone's different, but hopefully this is the beginning of a rebound. Good luck!

Tamar

Taking a look at the whole picture is the best way to treat ITP.

Murray you mentioned she was sick. We must always look at the whole picture when we are sick are immune system is triggered so that can cause a drop in our counts.

If there are no symptoms of bleeding people can live normal lives with lower numbers. We need to look at our lifestyles, the numbers, the symptoms and use that with the research into treatments and side effects to decide on the best choice for us!


Here's hoping the numbers continue to rise!

I never had pre-meds with Win-Rho either, but the few people who have had no pre-meds and ended up with a bad reaction wished that they had! Win-Rho used to be given as a 5 minute IV push and the patient was free to go. Now they do it as an hour long IV with pre-meds, and are supposed to keep the patient for observation for a few hours due to the black box warning.

Closely monitor patients treated with WinRho® SDF for ITP in a healthcare setting for at least eight hours after administration. Perform a dipstick urinalysis to monitor for hematuria and hemoglobinuria at baseline and then after administration at 2 hours, 4 hours and prior to the end of the monitoring period. Alert patients and monitor the signs and symptoms of IVH including back pain, shaking chills, fever, and discolored urine or hemoglobinuria. Absence of these signs and/or symptoms of IVH within eight hours do not indicate IVH cannot occur subsequently. If signs and/or symptoms of IVH are present or suspected after WinRho® SDF administration, post-treatment laboratory tests should be performed including plasma hemoglobin, haptoglobin, LDH, and plasma bilirubin (direct and indirect).

www.winrho.com/

I tolerated WinRho really well. Before the first infusion, I asked my doctor about pre-meds, and his response was "let's see if they're needed". I had complete trust in him, so we went without, and as it turns out I didn't need them.

I had a 30-40 minute drip each time, which may have contributed to how well I tolerated the treatments. And, there are different doses for WinRho, too. I started with the standard dose (50mcg/kg) which gave me about 6 weeks before I dropped below 40 (that was a pretty common treatment level back in 2002). After 2 doses @ that standard dose, we switched to a higher dose (75mcg/kg) which had been reported to have a longer effect. That's certainly what I experienced, and those tx initially lasted 9-12 weeks.

A couple of years later, and after my wonderful hematologist moved to UNC from UofM, I decided to try to "taper off" of WinRho...which was not reported in any research, but was just something I wanted to try. My new hema hated the idea, but an email from my previous hema (they were good friends) convinced him to allow me to try it, and my last tx were 35mcg/kg.

That's pretty much my WinRho story. The black box warning about possible severe depletion of hemoglobin came after I'd pretty much tapered off. I always had ~1.5 drop in hemoglobin from WinRho, but my starting numbers were high enough that I tolerated that just fine.

I cannot say pre-treat because of George Carlin's routine about pre-boarding an airplane, I don't pre-heat or pre-treat or pre-medicate or pre-board or pre anything

I had no medication/s before my WinRho IV - had no trouble, no side effects of any kind and best of all that one IV put me back into a "remission" (counts lower than the norm low but decent, up & down), and that was September 2002, have not treated since. Also they sent me home shortly after it was finished, I do not recall staying to be "observed" - but this was back in 2002 so maybe they did make me stay a while and I've forgotten.

So once did the trick for me - the IV took about an hour or an hour and a half.

Murray I have been reading just haven't responded yet. When I was diagnosed in 1989 it was prednisone or splenectomy, since they couldn't assure me removing the spleen would cure me I said no. I did find out many years later they were using IVIg as a treatment, but since a gamma globulin injection is what triggered my ITP that wouldn't have been used anyway.

Hope your wife is feeling better!

Things with Win-Rho have changed since the recent black box warning. It was easier back in the old days, but protocol has changed. I'm pretty sure that pre-meds are part of the protocol, but couldn't find it. Surely a doctor should be aware of it though. I used to be in and out in 10 minutes. Now it takes about 9 hours.

Well, that regimen sure makes WinRho less appealing. I've been out looking at the warnings, and wonder if the monitoring has to take place in a health care facility, or if it just means you get sent on your way with the dipsticks after an hour or so.

I always hung around about 15-20 minutes after an infusion to make sure I didn't get lightheaded or anything. The part of me that is glad WinRho was such a good option for me feels like the recommendations are overly cautious, but I obviously am not qualified to make that call. I noticed that the warning does't seem to cover all uses of WinRho.

Personally, I'd still prefer occasional WinRho to daily prednisone, but I have to admit the decision takes on a more gravity with this development. Of course, rituxan has 4 black box warnings, and surgery like splenectomy doesn't get black box warnings, so everything has to be taken in context.

Sandi, can you believe we're talking about "the old days"? :ohmy:

Hi gang sorry for the delayed response, but we took a mental health day away from this stuff (otherwise known as working in the yard lol) Anywho yeah it was a weird visit, the premeds question came up, the facility wasn't going to follow the new regime for observation, her numbers appeared to be possibly going up, and we couldn't get a straight answer out of anyone so we put the brakes on and walked. Declining treatment really put the staff on tilt, almost to the point they were trying to guilt trip us into doing what they said.

I think our main issue was the whole premeds and observation regime. Being new and not having any experience with WinRho we educated ourselves the best we could and went to the treatment. Next we were told nothing we'd read would be applied, one answer we got from one nurse was simply " thats only followed if you are admitted"

It's all very confusing, I've read how it "used" to be done and I've read the mfg. recommendation we are just trying to decide what we are comfortable with. One things for sure we wont be guilted into any treatments. It must sound like we're such trouble makers, but really we're not, we just insist on answers.



Now I must go replace a toilet, if you've never had teenage boys growing up in your house you're missing out.

Jason, If my counts were headed north, I would not try a new treatment. The heck with any health care providers who don't respect you for putting the brakes on. I personally am impressed that you did it so early in the game.

As I mentioned above, I have fought for what I thought was right in doing the WinRho "taper" which my hematologist at the time was against. I also changed hematologists when my first hema told me I'd be getting a splenectomy "in the next several weeks" if my platelet count didn't get above 125K while on prednisone. You and Annie are doing a great job handling this!

Let me konw if you were able to take a look at the video I sent....

Tamar

Tamar:

From what I've read, the 8 hour observation takes place in the medical facility. There has been one person here in the past year or so who uses Win-Rho (it's just not that popular anymore), and they kept him that long. I know....the old days! How much things have changed. You were our Win-Rho poster girl! You know what though, I'm pretty sure that even IVIG had a recent black box warning, so nothing is 100% safe.

Mur:

I agree with Tamar on your decision. Do not allow yourselves to be bullied into anything that you are uncomfortable with. It takes a lot of guts to follow your instincts and be confident of your decisions, especially this early. Those of us who have used Win-Rho in the past had it pretty easy, but things have changed. If it's done differently now, there is a reason. You're doing the best thing you can do by researching and learning.

When I went for my last treatment they do not pre-treat me. That said I need to have Tylenol and benadryl before I get the Rhogam/ Winrho or I will get a reaction (the more I use a medication worse my side effects become). So I took my own Tylenol and benadry (I just informed the nurse what I was taking). They also let me go as soon as the IV was removed.