Another newly diagnosed

It seems weird to be on here for ITP now. 3 years ago I was newly diagnosed with thyroid cancer and doing this same thing on their website... and now that I am relatively healthy (I was running 3 miles a day after a gastric bypass procedure), I'm back for this rare blood disease...

Anyway, it all started with a routine follow up to my gastroenterologist, and found out my platelets were a 57. Well considering the exhaustion I struggle with and the severe bruising to my legs, I took my concerns to my family dr the next day. He did blook work, and called me Saturday morning to tell me my platelets were at an 8 and that I needed to get to an ER for conformation and transfusion. And since I was on the way to see my husband who was in the hospital for gastric bypass complications, I went straight in and had it tested. Platelets were a 9, so I got two bags. I was admitted to the hospital (this was at the beginning of September).

Initial response to 100mg of steroids and platelet transfusion was good. Platelets went up to 31 and then 120; so I was released on 100mg of steroids. After about 2 weeks of steroids, platelets started dropping a bit, but the dr was ready to taper me to 80mg. This caused my platelets to drop from 120 to 59. Dr checked them last Friday and they were 19. So on Monday I saw my hemotologist, who has prescribed Rituxan. Not sure how I feel about that. My first dose is tomorrow. Would love to hear how this made you feel. If it gave you any weird side effects, etc. I have a 4 and 2 year old, and my husband works away from home. They are staying with the babysitter all night, just in case it makes me too exhausted.

I can say that this is a little overwhelming and scary. Should I be worried about passing if my platelets get too low...I would hate for my girls to see me passed out and not know what to do (tho we've discussed it, just in case).

Thanks for reading and responding! -Jill

Welcome to the board. There are great people here who can answer questions and just share the ups and downs of ITP that your family may not be able to relate to. Some of us have been participating in the board long before it became the PDSA. I'd recommend you check out the "sticky" posts under Newly Diagnosed. Steve's advice in Excellent Advice is one of the best I've seen.

While it could happen, passing out isn't a typical symptom for ITP. You're more likely to identify symtoms like nose bleeds and bad brusing before you get to that point. I personally haven't done rituxan, but if you check out B-cell Depletion (anti-CD20) under the Convential Treatment section of the main site, it will give you some good information.

Hi Jill. I'm glad you found us.

First of all, you can still consider yourself a relatively healthy person. ITP isn't particularly debilitating, although the treatments can sometimes make you feel that way, especially steroids.

It's odd to have severe bruising with a count of 57, but everyone is different. 57 is considered a pretty safe count for most, but symptoms are important too.

Platelet transfusions are not normally given for ITP, but that would be a typical ER response since they are generally unfamiliar with ITP.

Passing out is not a common symptom. I felt some dizziness when my counts were under 10 but never fainted. Sometimes anxiety can play a role in that end, so it's important to distinguish what you are really feeling.

As for Rituxan, most people tolerate it well and have no problems. I was drowsy the day of the infusions because of the pre-meds (Benedryl mostly), but was fine for work the following day. It wears off after a few hours. Most people find that the side effects of Prednisone are worse than those of Rituxan.

I know it seems scary and everyone feels that way at first. But as you read and learn about ITP, you will feel calmer. I agree with Bunnie - read Steve's (Gort) post because it is full of wonderful advice.

www.pdsa.org/forum/5-newly-diagnosed-a-frequently-asked-questions/8344-excellent-advice.html

Welcome!! You have found a great supportive group of people that have been through this. This is scarey at first but once you become familiar with it, it does get easier. Worrying about it day after day, does not help. I know it is easier said than done. I did not find this site right away, to ease my worries. But once I did, it really eased my mind. Reading other peoples experiences and talking about it, really helps mentally, which in turn helps physically!! Initially I was treated with Prdnisone, which raised counts a bit, but droped as I tapered off. I also had Platelet transfussions (2), which did not last. More Prednisone to raise counts quickly as I was down to 4k. Two rounds of Rituxan. The first round had me in remission for 16 months, counts droped again. Second round has me in remission for almost 3 years. Is hard to say you will not have any side affects from Rituxan. The main side affect during the infussion, is the drowsiness from the pre meds, Benyadryl. Infussions can take 5-8 hours, depending on the infussion rate. Generally the infussion is started slow to see how you will tollerate it. If you do fine, the rate will be increased every hour. I had a reaction the first treatment of my second round. Shortness of breath, chills, tightness in chest. More Benadrly was given to counteract the reaction.
PLEASE try to relax, you are not going to pass from this. You will be fine.
This site is full of helpful info and do read Steve's post.
We know what you are going through, so do not feel like you are alone in this.

hi every1 thx for all the info was diagnoised with ITP 3 weeks ago cant keep counts above 10000 today at 4000 but 2 days ago i was at 40000 they took me off dexathsone and put me on prednisone at first 40 mg since my count dropped they upped it to 100 mg have diabetese so my blood suguars have been high last sunday was at 2000 and had a nose bleed heavy) for 4 hrs i thought i was dying this is so scarey cuz i had bone marrow biopsy and everything has cum back negative i drive school bus which i am scared to do cause i think another episode of bleeding will happen single mom no insurance and ppl think u look fine so they dont understand the emotional toll this takes stay n strong n my faith but alot of times i break dwn cause i dont know how to handle the helpless feelings dont want to b scared to live and without my part time job with no benefits i have no income please put me n ur prayers as i pray for us all didnt know ppl live with low numbers for years..fighting to keep my mind right

Hi Jill ans Kym,
I also suggest you read Steve's advice, I actually have this printed and read it every now and then just to keep some perspective.
I also read another post by KO27 on here and it was good too, It's towards the end of a really long thread but if you have the time read it all because it is a good read all on it's own.
Good luck with your journey, you will learn so much here, mostly you will see that the treatments are a bit harsh on your body and you mind, but you will also see all will be ok.

HAS ANYONE NEWLY DIAGNOSED STAYED UNDER 10000 AND IF SO FOR HOW LONG I HAVE READ ANYTHING UNDER 10 IS A MEDICAL EMERGENCY, BUT THE DRs DONT SEEM TO B AFFECTED BY THE LOW COUNTS WHICH HAVE BEEN 9000, 5000,4000, AND 2000 WHICH GAVE ME A 4 HR NOSE BLEED THEY WONT GIVE ME TRANSFUSIONS CAUSE MY BODY EATS MY PLATELETS TO FAST BUT MY BODY IS PRODUCING THEM RAISED MY PREDISONE FROM 40MG TO 100MG HAVE BRUISES BUT NO MORE BLEEDING EPISODE SINCE LAST WEEK I STILL HAVE MY NOSE PACKED FROM LAST WEEKS NOSE BLEED THEY PLAN TO REMOVE IT IN 2 DAYS I AM TERRIFIED HAVE READ ALOT OF POST & AM ENCOURAGED BUT THE LOW NUMBERS ARE SCAREY

THX STILL SEARCHING FOR K027 POST

Kym:

Low numbers are not necessarily a medical emergency. Symptoms can be.

This is KO's post:

There are some things that happen to people like an avalanche; trauma, getting diagnosed with stage 4 anything, etc., but in my two years with ITP I can tell you my experience has been more of a marathon. It's about endurance, research and perseverance, and not about quick reactions and sudden decisions.

I'm sorry to hear about your case, as I am about anyone's, so I'll share a few quick pieces of advice before I continue my story:

1. See more than one Hema. Especially before making any irreversible decisions. Ask doctor friends, or friends of doctors to ask for you, for references.
2. Get serious health insurance- you will need it to fight this effectively. You don't want options off the table because "Insurance doesn't cover it". I have an Aetna group policy through my own small biz and I never regret the premiums even though they are mortgage-like.
3. Do the things that offer permanent potential first- Pulse Dex, then Rituxin if Dex doesn't work, and get checked for H.Pylori while you're at it.
4. Go to England for the Indium test. It's the best $1000 you will spend in your life. DO NOT consider a splenectomy without knowing the results of this test.
5. Be goddamn careful if you try WinRho. Make sure your Hema knows what he's doing and stay in his chemo room or whatever for at least the 6-8 hours after the bag is finished. Hemolytic reactions suck and can kill you.
6. My Hema at Johns Hopkins told me that IVIg wasn't a treatment; it was a bridge to a treatment and shouldn't be used as a regular treatment unless necessary. I say this having used it as a treatment, but there are risks to all this stuff and sooner or later that will become apparent.
7. It's about balancing risks; when you get the point where the treatments are riskier than the disease, it's time to call time out. It's funny, but Pharma companies don't have to abide by the Hippocratic oath. "Yes, lifelong dependency on our brand new drug can raise platelet counts in some people, providing you take it 3 hours before food, not containing dairy products on every second Tuesday of each month on the Mayan calendar. Oh, and you may grow a third ass cheek or something, but you'll definitely have only a moderately unsustainable platelet level instead of a completely unsustainable one" - GSK Cares
8. ITP Sucks, but it's not cancer. I mean this. My Hema is also an Oncologist and consequently when I visit, I'm the only person there not actively dying at an accelerated rate. So don't feel sorry for yourself. Seriously. It's not cancer so don't you dare act like it is. It won't help you and it won't help anyone around you. Suck it up, find the strength, and try to make it as invisible as you can to your family. I sure as hell don't want my kids growing up thinking they have or had a 'sickly' father. What they know is that I don't race cars anymore, I wear a bicycle helmet now, and I'm more physically conservative than I used to be.
9. Have ALL the tests- Reticulocytes, Immunoglobulins, etc. Rule everything else out. Evans, CVID, Hep C, every damn thing that ITP could be secondary to. Have all the scans to rule out any possible lymphomas, and Lupus as well. You do NOT want to be fighting 'Thug #1' when you should be fighting the Joker himself.
10. That's about it. Actually, probably not, but those are the highlights. If/when I remember anything else significant I'll add to it.
Now it's gotten so late that I'll have to continue my story tomorrow night, but I hope this helps in the meantime.
Night,
KO

Very good description of this disorder!!!

Today my counts went up to 8000 by being on increased Prednisone for two days was at 4000went from 40 mg to 100 mg still not out the danger zone but for the first time since being newly diagnosed they are moving in the right direction..THANK U JESUS..PRAY N 4 US ALL

Higher doses of Prednisone will increase counts, but when Prednisone is tapered, counts will drop again. You do not want to be at 100mg for very long. Have you considerd any other treatments?

Counts won't always drop as the prednisone is tapered otherwise there would be no point in the doctors ever trying it. The idea is to get a good count and then withdraw the drug slowly in the hope that the count then stays up. It does for some. It is protocol to use the steroids for at least 4 weeks before giving up.

Dean, I was one of those that prednisone worked for, turned my world upside down but it did work. I started on 75mg and tapered by 10mg a fortnight to start with and counts always dropped by about 50 in the first week that the dose was lowered but came back up the second week. When the first couple of drops happened we put the dose back up but after a while we could see it was just a temporary thing and just let them drop for that week knowing they would go back up.

I am now just a couple of months short of two years with no treatment and my last count in Feb this year was 130, happy with that

THE 20TH WILL B A WEEK ON 100 MG OF PRED MY BLOOD SUGARS R IN THE HIGH 200s GO 2MORROW FOR ANOTHER COUNT CHK PRAY N I AM AT LEAST 30 THESE LOW NUMBERS WITH THE 4HR NOSE BLEED HAS ME SCARED.THIS SITE HAS BEEN MY LIFELINE FAR AS INFO GOT LOTS OF QUESTIONS FOR THE DR TOMMORROW

THX ANN AND MILLY NEEDED TO READ THAT TRYING TO STAY POSITIVE BUT REALISTIC & TO REMEMBER NOT EVERYTHING WORKS THE SAME

Good luck, Kym. Hey - do us a favor and type in lower case letters, please. Typing in caps is the equivalent of SHOUTING.

lol k thx today was a bummer after a week on a higher dose of pred 100 mg my platelets dropped from 8 to 3 monday they are going to try immune globulin intravenous can anyone shed sum light on this type of treatment and the side effects they told me it will take 6 to 8 hrs to complete i pray this works i am trying to hold on to my sanity and still drive school bus my blood sugars are out of control something i always prided myself on controlling they up'd my metformin to 3000 a day used to only have to take a 1000 a day i have lost control of my body frightened

That is IVIG. It's basically a treatment, meaning that it can raise counts quick, but the result doesn't last long. Most get a few days or a week or two.

I know the feeling of loss of control is scary. I think though, that the more you learn about ITP, you can start making suggestions to your doctor and take a bit of that control. Most people find that when they become a team with their doctor, it makes a huge difference.

Dean thx so new to all this kinda hope n the dr can suggest other treatments, but the more i read n different forumns the more I see I have to be my own advocate and work as a team player.trying not to seem desperate for a quick fix since nothing has worked thus far dexamasone nor pred kept my platelets up above 30 try n the IVIG monday but i read thats a quik fix that only last a few days dont have insurance so my options are limited ask n to taper off the pred since its not work n not many options left DONT want to lose my spleen stay n prayed up

Kym, at first this disorder is scarey, as is any health condition until one becomes familiar with it. It really helps to have a forum like this to hear about other peoples experiences with symptoms,treatments and side affects. One really does have to be their own advocate. Treatments are your choice, not the Dr's. I hope you find an option that works for you! There is no cure for ITP or a guarantee with any treatment. It is a wait and see game. With a Splenectomy, once it is removed there is no replacing it and you can still have low counts that may need further treatment. Diabetics taking a steriod treatment will have an increased blood glucose level. Once the steroid is stopped the bg's should return to pretreatment levels a few days after the treatment is stopped. Have you considered Rituxan?
Prayers are with you kym!!!

so today my counts went from 3 to 6 still dangerously low havent had anymore bleeding episodes..THANK GOD started a round of IVIG today four more days to go I pray this least get me out of double digits .I hear it to is a quick fix the dr says n 3 weeks he will start weening me off the high dose 100 mg of pred he says they take time to work but its been 9 days no big bump n numbers like i read with others. i faxed my complete blood work to a highly recommended chiropractor whom tried to convince me I had lukemeia which i was tested for and came back neg he says i have some form of cancer and he has something that could cleanse my blood but i have to drive 45 min to get tested and try I am thinking about going since my counts are so scarey can any1 shed sum light on these types of treatments..dean would like to try ritxuan but with no insurance I am limited

Kym - I'd stay away from that chiropractor. He has no idea what he is talking about and has no right to scare you like that. Definitely over-stepping his bounds.

All of that IVIG can be just as expensive as Rituxan and wouldn't last nearly as long.

Hi everybody pretty much covered everything take a deep breath it will be ok I have had itp for 9 years I'm 26 now and you learn to live with this pain in the ass disorder at times you will feel defeated just remember it could always be worse two years ago I was on my period and started bleeding super heavy but just got a new job n no way was I missing a day so soon long story short worked the whole week and Saturday came around I could barely stand went to ER hemoglobin 2 platelets 0 I'm just trying to explain I had symptoms every warning in the world as long as your not foolish and listen to your body like I didn't you will be fine and right now my platelets are anywhere from 2 to 5 because nothing is working right now but I don't pass out I actually went for a three mile walk this afternoon I just know watch my head my fiancé jokes he's gonna buy me a helmet and I always joke w my family I have itp I could at least been graceful because I am the biggest klutz in the world that's usually where my bruises come from sorry rambling just trying to say don't stress your self out too much just when your low be careful no motorcycles skydiving or paintball n make sure you don't hit your head it will be ok

kym wrote: so today my counts went from 3 to 6 still dangerously low havent had anymore bleeding episodes..THANK GOD started a round of IVIG today four more days to go I pray this least get me out of double digits .I hear it to is a quick fix the dr says n 3 weeks he will start weening me off the high dose 100 mg of pred he says they take time to work but its been 9 days no big bump n numbers like i read with others. i faxed my complete blood work to a highly recommended chiropractor whom tried to convince me I had lukemeia which i was tested for and came back neg he says i have some form of cancer and he has something that could cleanse my blood but i have to drive 45 min to get tested and try I am thinking about going since my counts are so scarey can any1 shed sum light on these types of treatments..dean would like to try ritxuan but with no insurance I am limited

Why are you disclosing your blood work to a Chiropractor? A Chiropractor is not a medical Physician. What would he know about blood work! Your test for Lukemia came back negative, so why would you believe a Chiropractor telling you you have it?? I would SERIOUSLY consider NOT trying this "blood cleansing" thing!!! If you decide to, I would ask your regular Dr first!!!
He has no business giving this type of advise!!!
A Chiropractor is a trained "Health" professional to treat, lower back pain, neck pain, Repetitive strains, headaches, sports injuries, car accident injuries and Arthritic pain. They are not experienced with blood disorders! Are you seeing an actual Hemotologist?
As far as costs for Rituxan treatments, I looked at Rituxan.com and is seemed like there is assistance for uninsured individuals. I doubt the 100mg of Prednisone is going to do anything if it has not after 9 days. Another 3 weeks of 100mg may have some nasty side affects.
Check into the Rituxan treatments.

If you want to try rituxan then opt for the low dose regime. 100mg once a week for four weeks is far cheaper than the higher dose they give for other diseases, and it's been shown to work just as well.

hi kym, you should relax ive had a count of less than 10k for 4 weeks . for 2 weeks i had a count so low that the machine couldnt measure it (0-3). i had a nosebleed that lasted 3 days, i ended up going to the hospital where they had to put a tampon in my nose because it didnt stop.
Immunoglobine captures the anti-bodies that supposidly attack your platelets, like sandi said it doesnt have a lasting effect.

as dean said i wouldnt trust a chiropractor, if your seeing a hemotologist you could ask if Nplate is an option for you. prednisone didnt work for me and immunoglobine didnt work but Nplate seems to work.
i dont know how heavy you are but 100 is a lot. im 60kg and they gave me 60mg max.

thx everyone for sharing I am going to pass on the chiropractor i do have a hematologist just wanted to try an alternative to the pred I did schedule an appt with another hematoligist just to c if she is more informed about ITP will b talking to my dr about trying the rituxan and nplate thx everyone have to have labs friday hope this IVIG last a couple weeks with high numbers will keep u updated praying for us all