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New to all of this 2 years 1 month ago #59021

  • ytsejam02
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  • 39 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I follow a Paleo/Autoimmune Protocal (AIP). I'm an active Crossfit member and biker.
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Hi Everyone,
My name is Jason (call me Jay). I'm a 38 year old male, married, and father of 3 daughters (8, 6, and 2). I was just diagnosed 15 days ago. It's been a crazy month. I say month because 2 weeks prior to my diagnosis I was in a car accident that totaled my car when another person ran a red light. We all walked away thankfully. Then, as I said, two weeks later, I find blood in my urine, and go to the Dr, who called me late that evening regarding low platelets, everything else normal, they'd feel better if I went to the hospital. Happened to see the same Dr I saw for a checkup from car accident. As you all probably can imagine, it's unrelated, though sometimes I wonder about a stress trigger...

Initial platelet count was 22 at the Dr's that afternoon. 16 at the hospital. 33 the next day at the hematologist, after 1 dose of steriods at the hospital (no idea how much they gave me... assuming it was 70mg). Spent the first week at 70mg. Started tapering last Monday, currently at 40 mg, will be going to 30 on Thursday. Recent check was down to 51. So, not trending in the right direction. Based on everything I've read this seems fairly normal, and I shouldn't get hung up on the checks especially with how rapid I'm doing them? I'm going again on Friday. I'm just not comfortable waiting the weekend right now.

Seems like I'll be dealing with this for a while. I'm still processing, feeling very emotional, moderately scared... Not sure I see the point detailing all my current fears, because I'm guessing you've all been thru them. I'm still at a point where I have a fair amount of self pity, and maybe that's the prednisone. It feels selfish, as all signs point to this being nowhere near the worst that can happen.

My Hema wants to monitor as I ween, since he considers anything above 30 to be "safe" especially given my career is not at all dangerous. He seems very reasonable. He has spoken of Rituxan, and appears to favor that as a next course, if necessary, but again, wants to wait and see. He has spoken of splenectomy, but would prefer not to. I'm sure my wife is scared, and I feel like I need to figure out how we can both come to grips with what appears to be a new reality. I'm not sure I can talk about it yet without getting upset, and yet it sounds like such a long process, putting it off seems silly.

I know this can be controversial, but I made an appointment with a MD specializing in natural healing with the intent to do something about the autoimmune issue, rather than treat symptoms. I also was diagnosed with allergies about 5 years ago for the first time, so there definitely seems to be some kind of evolution my immune system is going through. Seems like a far cry to go from allergies to platelet destroying antibodies, but I'm not Dr. :-)

Anyway, I just wanted to introduce myself. Thanks for listening.
Jay

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New to all of this 2 years 1 month ago #59023

  • mrsb04
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Jay
Welcome to the world of ITP.

The link below is to a booklet published by nurses for nurses who know nothing about ITP which was me until 3 years ago. It is not overly technical and will give you a comprehensive over view

www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF

Anne
The following user(s) said Thank You: ytsejam02

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New to all of this 2 years 1 month ago #59024

  • ytsejam02
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  • 39 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I follow a Paleo/Autoimmune Protocal (AIP). I'm an active Crossfit member and biker.
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Just curious, the handbook is 6 years old. And while much of it seems to agree with what I've found on the internet, I'm wondering if there is any new information out there? Especially around statistical rates for newer drugs?

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New to all of this 2 years 1 month ago #59027

  • mrsb04
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This was produced last year
www.swlmcg.nhs.uk/Clinical/Haematology/SWL%20ITP%20treatment%20pathway%2016_17%20FINAL%20v2%20010416.pdf
ASH 2011 guidelines are still adhered to worldwide but they are currently being reviewed
www.hematology.org/Clinicians/Guidelines-Quality/Guidelines.aspx

Things move slowly in medicine as patient safety is paramount

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New to all of this 2 years 1 month ago #59028

  • ytsejam02
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  • 39 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I follow a Paleo/Autoimmune Protocal (AIP). I'm an active Crossfit member and biker.
  • Posts: 86
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  • Thank you received: 7
Understood about the safety front.
I'm just feeling a little overwhelmed and lost at the moment. Grasping at straws, and hoping to see my girls grow up a little bit more.

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New to all of this 2 years 1 month ago #59029

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Hi Jay. I'm glad you found us. Hopefully we can alleviate your fears. ITP is scary when a person is first diagnosed. Been there. In time you will come to terms with it and realize that it is rarely ever fatal, especially since you are being monitored and treated (and you respond to treatments). If you can get counts up, there really isn't anything to fear. Your Hemo seems to be on top of things, although in my opinion, he is tapering you much too quickly. If counts are dropping with the taper, then it's not going to help much other than being a temporary fix. Remissions are possible from Prednisone, but not if counts are not holding steady.

There is good information on the internet, and there is bad information on the internet. Some of us are pretty well-versed with ITP so we can let you know what is true and what is not. You seem to have done your research; great start! Knowledge is power. It's important to learn as much as possible and work with your doctor as a team. It's your body and you will need to advocate for yourself.

You're right, symptoms are important and being obsessed with the numbers will drive you nuts. Counts go up and down and it will be a roller coaster for a while until you find a treatment that either causes remission or causes you to maintain safe counts. Finding the one that works for you with the fewest side effects is the trick. You'll get there. It used to take about a year for that to happen, but there are newer meds out now that speed up that process a bit.

So far, your counts have not been in single digits and that's good. Keeping them above 30k is a great goal because it is a safe number. Please know that if counts do drop below 10k, it is not a death sentence. It's not even a medical emergency unless there is severe bleeding. You'll get a grip on this soon enough. Try to stop worrying about not seeing your daughters grow up. ITP isn't a death sentence. It can be overwhelming but the more you learn, the calmer you will feel.

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New to all of this 2 years 1 month ago #59030

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Have you read this? It was written by a member who has had ITP since he was a child. He is an expert:

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

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New to all of this 2 years 1 month ago #59031

  • ytsejam02
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  • 39 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I follow a Paleo/Autoimmune Protocal (AIP). I'm an active Crossfit member and biker.
  • Posts: 86
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I was hoping you'd respond. :-) I've seen enough of your other posts before joining to know you're the type of support I need. I'm not embarrassed to say your response is choking me up while I'm at work (I have an office!), but seriously, in a good way. It's one thing to read a sticky, it's another thing entirely when someone is talking directly to you. So again, thank-you so much for your response.
I do see my Dr on Friday. It's not very clear to me what I high dose of prednisone is. I haven't had any side effects (other than the platelet count dropping) to the ween. Unless me getting emotional counts!
I'll talk to him about slowing the taper. That 70mg/daily for a week was such a shot in the arm. All that rush went away by the time I started at 50mg daily. And I know Prednisone isn't a good thing despite how it made me feel. You all obviously know more about it than I do, so I very much appreciate that insite.
Again thank-you so much.
I'm even looking at what it would take to get to the annual conference!

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New to all of this 2 years 1 month ago #59032

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Yeah I'm an old fixture here. :) I've been here nearly every day since I was diagnosed in 1998.

I'd say a high dose of Prednisone is anything over 30 to 40 mg's. 60 mg's is a normal starting dose for ITP, but it is usually based on body weight. I've seen people start at 100 mg's and THAT is a really high dose. The longer a person is on steroids and the higher the dose, the worse the side effects are. It's good that you are not noticing too many right now, but that could change. If counts are dropping as the taper goes on, some doctors will tell their patients to go back up with the dose. This can happen several times and it gets old fast which is why speeding through it isn't a good idea. You are responsive to Prednisone, but a really good response would have put you over 200k by now. That's okay, sometimes it takes longer to see that but some people never get that high from Prednisone. If counts do not hold, you move on to another treatment.

The conferences are great! The PDSA consults with the top ITP specialists in the world. The info is credible and up to date.

It's ok that you got emotional (in a good way). We are here to help in any way. ITP is not only a physical disorder, it affects emotions as well. We've had to talk a few people down off of the ledge over the years and eventually, they all find firm footing on the ground. You will too.

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New to all of this 2 years 1 month ago #59034

  • momto3boys
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Welcome Jay!
I'm a 41 year old mother of 3 boys (ages 15, 12, and 10) and I've been dealing with ITP since I was a child (I forget the exact year I was diagnosed, but since I was 8 or 9 years old for sure). Anything new coming at you from left field is definitely scary until you get a chance to read up on it and wrap your mind around it. Don't feel bad about being emotional, big life changes are definitely hard to deal with. Add prednisone-induced mood swings into the mix, and it's hard to feel balanced.

Your counts so far don't sound too bad at all. Anything above 30,000 without symptoms is generally considered a safe number for daily life. Numbers below that without symptoms are also not a cause for alarm. As you continue to learn about the condition, you'll see that a lot of the newer guidance for treatment really takes what symptoms you are having into account. Counts will fluctuate naturally as well, and this can lead to some strange rises and dips that can make you wonder :)

As you learn more about what treatments are available, you can better work with your hematologist about what to do moving forward. Who knows, maybe without treatment your numbers will settle somewhere that doesn't require any intervention at all, just periodic blood work to keep tabs on things.

And as a personal note on the splenectomy, I had one done as a child because we didn't have as many options back in the 80s. I'm still fighting with my ITP all of these years later (and wishing that I still had my spleen). There are no guarantees with that, despite plenty of doctors that might want to jump to surgery. It's a good sign that your doctor isn't pushing for that right away. It has fallen out of favor as a treatment for this condition without fully exhausting other treatment options.

So, just take things a day at a time, and try not to worry about being around for your kids! Thankfully, outcomes with this condition really don't go down that road. Honestly, the treatments are usually what cause more effects than the ITP itself! It's all about finding the right balance of numbers that are safe and minimal treatment needed to achieve safe numbers.

Good luck as you figure things out. This is a FABULOUS place to ask questions. People here can commiserate and give pointers to information that can help you make decisions.

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New to all of this 2 years 1 month ago #59035

  • ytsejam02
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  • 39 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I follow a Paleo/Autoimmune Protocal (AIP). I'm an active Crossfit member and biker.
  • Posts: 86
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I weigh about 155. So, guessing 70 was pretty high. Since I'm currently supposed to drop to 30 on Thursday, and I'm seeing my Hema on Friday, I'm considering staying at 40 for those two days. Though, based on what you said, if a successful treatment of Prednisone typically does a better job with the count, perhaps I'm just delaying the inevitable "move on to the next treatment". I've read that remission was unlikely solely from Prednisone. I was hoping... Still, if it's truly a marathon, I feel those two days won't matter, and then I can have a conversation with him. Also, to your point, I don't really want to go up and down with the dose. Feels like I'd be beating my body up more than I should.
I'm trying not to focus on the question "what if none of the treatments work"? I'm practically willing myself to get to a better mental state, and I know that's a silly notion. For me, it's always been time, whenever something serious happens.
For what it's worth, at this very moment, I feel like I at least have one foot off that ledge, thanks to both spending the evening with my family, and the support that's been shown on this site.

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New to all of this 2 years 1 month ago #59036

  • ytsejam02
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  • 39 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I follow a Paleo/Autoimmune Protocal (AIP). I'm an active Crossfit member and biker.
  • Posts: 86
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Thank-you for the welcome, and insight!
It feels weird at the moment, like I'm being selfish. I know plenty of people are worse off. And I wonder that the odds of me walking in the door after work every night really hasn't changed much from just life happening.
I really don't want to go the surgery route. I'm glad to hear there are so many options. I'm going to try the dietary route as well, because why not? Eating more veggies and protein and less grains, whatever. If nothing else, maybe it'll just make me feel better regardless of any effect on platelet count. Right now, I feel like my stomach is in knots.
I think the scariest part was how quickly it all happened. The 6K drop from 4pm to 10pm sounded like a lot (as if I knew anything about it at the time). I'm honestly holding my breath every time I use the bathroom, since that's how it all started.
Your story is definitely encouraging for me, so I really do appreciate the response.

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New to all of this 2 years 1 month ago #59037

  • ytsejam02
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  • 39 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I follow a Paleo/Autoimmune Protocal (AIP). I'm an active Crossfit member and biker.
  • Posts: 86
  • Karma: 1
  • Thank you received: 7

Sandi wrote: Have you read this? It was written by a member who has had ITP since he was a child. He is an expert:

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


Thx Sandi, I did see this. It was great info, and I've even quoted it when talking to my brother's about this.

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New to all of this 2 years 1 month ago #59038

  • D.Mann
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Welcome Jay. I know a lot of what your going thru emotionally right now. I'm a 50 year-old husband and father of 3. I went in for routine blood work last October and got the call from my doc to go to the hospital now. I had no idea, just that he said your platelets very low. The elevator doors opened and I was on the cancer floor. That was a scary weekend for me and my poor wife. That morning our youngest flew to Haiti for a medical mission trip. CRAZY!
I did not respond to steroids, have done Rituxin, and now I am taking Promacta. IVIG works well for me as a rescue, 2 hospital stays and now once that the Hemp wanted me to go but I chose to just go to his office for IVIG. Promacta is working for me so far. There are a lot of options besides losing the spleen. You will have to weigh side effects, cost, and nuisance factor. Everyone is different. Good luck and ask questions. Sandie is great as well as others. (Too many to name them all)

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New to all of this 2 years 1 month ago #59039

  • Hal9000
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Hi Jay.
Couple of questions come to mind. Did you get a lot of bruising from the accident? Seems like it would be hard to escape that if you had ITP then. Also, did they give you any medication after the accident? Anything known to potentially cause ITP? Or, maybe you have taken a lot of Ibuprofen, or similar, for muscle aches since then?

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New to all of this 2 years 1 month ago #59040

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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ytsejam02 wrote: I'm trying not to focus on the question "what if none of the treatments work"?

Jay, one already did...the first one that you tried. There are many more options and chances are, you will respond to a few others.

The thing is, 'work' means that the counts went up. It does not mean that you get remission. I know that is always the goal and you may get that, but just knowing that a treatment 'worked' to get counts up means that you do not have to worry about living with low counts. Some of the treatments are on-going and their goal is to maintain counts. Promacta and N-Plate are maintenance drugs and they have a pretty high success rate. Prednisone can cause remissions if done right, but it is rare. I once had a three year remission due to Prednisone but I stopped going for counts the last year and a half of that time period. When I finally did, my counts were in the 30's. I have no idea how long they were down there, and I just monitored for a few months after that until they dropped further. Then I took a deep breath and treated again. You do what you have to do. It's not pleasant but it's also not the end of the world. Life can be as normal as you allow it to be. I decided from the start that I wasn't going to let ITP leak over onto the lives of my 3 kids or my job, so I did my best to just keep things as they were. Other than a few steroid SNAFU's (mood swings), nothing really changed.

You can do this. For your first day of posting, I can tell that you're already ahead of the game. There will be ups and downs and we will be here for all of it.

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New to all of this 2 years 1 month ago #59045

  • ytsejam02
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  • 39 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I follow a Paleo/Autoimmune Protocal (AIP). I'm an active Crossfit member and biker.
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Hal9000 wrote: Hi Jay.
Couple of questions come to mind. Did you get a lot of bruising from the accident? Seems like it would be hard to escape that if you had ITP then. Also, did they give you any medication after the accident? Anything known to potentially cause ITP? Or, maybe you have taken a lot of Ibuprofen, or similar, for muscle aches since then?


Hi Hal, no I did not bruise from the accident. I did go to the ER only because my neck stiffened up pretty quickly. Just so happened that when I went two weeks later for the platelets, it was the same ER doctor. He only prescribed muscle relaxers from the accident. I took those as needed for about 5 days or so. Never more than 2 in any given day. I took one round of ibuprofen at the hospital, and that was it.
About 4 weeks prior to the accident, I did come down with a cold (3 little girls, someone always has a cold!). About two weeks after that, I went to my ENT for sinus pain that wasn't going away after the cold. He put my on 3 days of 30mg of prednisone, and 14 days of clarithromycin. I finished those about 2 days prior to the accident. I was take Advil sinus and cold once or twice a day, depending on the sinus pain while on the antibiotics.
It certainly seems awfully coincidental that this would occur so quickly after the accident. But there doesn't appear to be any obvious connection.

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New to all of this 2 years 1 month ago #59046

  • ytsejam02
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  • 39 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I follow a Paleo/Autoimmune Protocal (AIP). I'm an active Crossfit member and biker.
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Sandi wrote: Jay, one already did...the first one that you tried. There are many more options and chances are, you will respond to a few others.

The thing is, 'work' means that the counts went up. It does not mean that you get remission. I know that is always the goal and you may get that, but just knowing that a treatment 'worked' to get counts up means that you do not have to worry about living with low counts. Some of the treatments are on-going and their goal is to maintain counts. Promacta and N-Plate are maintenance drugs and they have a pretty high success rate. Prednisone can cause remissions if done right, but it is rare. I once had a three year remission due to Prednisone but I stopped going for counts the last year and a half of that time period. When I finally did, my counts were in the 30's. I have no idea how long they were down there, and I just monitored for a few months after that until they dropped further. Then I took a deep breath and treated again. You do what you have to do. It's not pleasant but it's also not the end of the world. Life can be as normal as you allow it to be. I decided from the start that I wasn't going to let ITP leak over onto the lives of my 3 kids or my job, so I did my best to just keep things as they were. Other than a few steroid SNAFU's (mood swings), nothing really changed.

You can do this. For your first day of posting, I can tell that you're already ahead of the game. There will be ups and downs and we will be here for all of it.


Again, thx Sandi. The reality of all this really didn't hit me until this most recent visit where the numbers dropped. I guess I thought or hoped that it would be like an infection, take a drug, goes away, maybe comes back, take a drug again, rise and repeat... I feel like I've heard it described that way, but that could just be me interpreting what I want to believe. Unfortunately this isn't the first time I've had my life flipped upside down, that's a story for another day. I know what I need is time to process, grieve (mostly for the life you thought you had, but changed almost instantaneously), etc, and the support of those around me, both virtual and physical. I figure it's going to be difficult for those around me to accept because it's rare, and they won't understand. At least not right away. Hell, I don't understand it, so that seems to be a perfectly normal reaction. My wife has asked some questions, she's very supportive. She likes to take things day by day. I'm the planner, which makes us a good team.

And I hear you on letting it effect my kids and job. I cannot allow that. My family needs me, and I'll do everything in my power to be there for them.

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New to all of this 2 years 1 month ago #59047

  • ytsejam02
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  • 39 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I follow a Paleo/Autoimmune Protocal (AIP). I'm an active Crossfit member and biker.
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D.Mann wrote: Welcome Jay. I know a lot of what your going thru emotionally right now. I'm a 50 year-old husband and father of 3. I went in for routine blood work last October and got the call from my doc to go to the hospital now. I had no idea, just that he said your platelets very low. The elevator doors opened and I was on the cancer floor. That was a scary weekend for me and my poor wife. That morning our youngest flew to Haiti for a medical mission trip. CRAZY!
I did not respond to steroids, have done Rituxin, and now I am taking Promacta. IVIG works well for me as a rescue, 2 hospital stays and now once that the Hemp wanted me to go but I chose to just go to his office for IVIG. Promacta is working for me so far. There are a lot of options besides losing the spleen. You will have to weigh side effects, cost, and nuisance factor. Everyone is different. Good luck and ask questions. Sandie is great as well as others. (Too many to name them all)


Hi DMann, thx for your response. I'm hoping to avoid hospital stays as much as possible! As this is all new, I really don't know what that means. My Hema indicated that profuse bleeding would be a good idea to go directly to the hospital, but that I can always call them. They are a cancer center, so someone is always available. So naturally right now, I'm hyperfocused on ANY ache, pain, skin blemish, you name it.
IVIG is a temporary solution, correct? For emergencies? I guess they're all temporary... yet another thing that makes this scary.
My Hema seems to be on the path to Rituxan. It's only been 16 days... when I stop to think about it, aspects of this seem to be happening quickly. MY Hema isn't committed to it. He said that maybe 50 is my new norm, and that we'll only know by monitoring it more and getting more data. I'm a data kind of guy, so this makes sense to me. It sounds like he's prescribing to "Watchful Waiting", at least provided I don't start showing symptoms.

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New to all of this 2 years 1 month ago #59048

  • mrsb04
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The cause of my ITP has been attributed to sinusitis. I started bruising about 4 weeks after it cleared up.

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New to all of this 2 years 1 month ago #59050

  • ytsejam02
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  • 39 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I follow a Paleo/Autoimmune Protocal (AIP). I'm an active Crossfit member and biker.
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mrsb04 wrote: The cause of my ITP has been attributed to sinusitis. I started bruising about 4 weeks after it cleared up.


Hi mrsb04, do you have any more information on that? I have not heard that one yet. I certainly went through my history with the hema, and he made no comment on it. I've had it for a while... like 8 years, give or take.
I have also been diagnosed with allergies, such as dust, weeds, candida, a few other things. The thought there was that they were the reason for the sinusitis.

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New to all of this 2 years 1 month ago #59052

  • D.Mann
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  • Diagnosed October 2016 Steroids, IVIG, Rituxin, Promacta, Spleen removed, Rituxin again. Currently weaning off Promacta and Prednisone.
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About two weeks after that, I went to my ENT for sinus pain that wasn't going away after the cold. He put my on 3 days of 30mg of prednisone, and 14 days of clarithromycin. I finished those about 2 days prior to the accident. I was take Advil sinus and cold once or twice a day, depending on the sinus pain while on the antibiotics.
It certainly seems awfully coincidental that this would occur so quickly after the accident. But there doesn't appear to be any obvious connection.[/quote]

My last hospital stay was due to the flu and taking clarithromycin. Googled the side effects for it, major one is "unusual bleeding or bruising" (lowered platelets). Some of the antibiotics and be very rough on the body.

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New to all of this 2 years 1 month ago #59053

  • ytsejam02
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  • 39 y/o male, married father of 3 girls. Diagnosed 4/24/17 with a count of 22. Currently taking 50mg Promacta. I follow a Paleo/Autoimmune Protocal (AIP). I'm an active Crossfit member and biker.
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D.Mann wrote: My last hospital stay was due to the flu and taking clarithromycin. Googled the side effects for it, major one is "unusual bleeding or bruising" (lowered platelets). Some of the antibiotics and be very rough on the body.


Ugh... things you wish you knew right? Though would I have done anything differently? No. I would've taken it. Playing the odds that a rare blood disorder would not be part of it.

I've had a cough ever since the onset of ITP 16 days ago. I assumed it was allergy related. I told my Hema. My point of view is my body is dealing more than just platelet counts right now, between possible allergies (the cough?), the prednisone ween, platelets, stress, I just want to push the mental reset button to recharge my battery so I can make a better attempt at dealing with this, rather than the scattered feeling I have right now.

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New to all of this 2 years 1 month ago #59055

  • mrsb04
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ytsejam02
The one and only time I have had sinusitis:-this is from cks.nice.org.uk/sinusitis#!scenario "Acute sinusitis is caused by a virus in more than 98% of people, takes on average 2.5 weeks to resolve, antibiotics are only likely to help when there are features indicative of bacterial infection.
Only prescribe an antibiotic for people with acute sinusitis who have a co-morbidity that puts them at high risk for a complication, or when acute bacterial sinusitis is suspected." from cks.nice.org.uk/sinusitis#!scenario
GP said can't treat you yet as likely to be viral, bet you start to feel better within 10 days. She was correct, I was fully recovered within a fortnight. 4 weeks later I was admitted to hospital with a platelet count of 12. First thing my consultant said was all blood results normal except platelets bet you anything you like the sinusitis has caused it. pdsa.org/about-itp/causes.html
However presumably yours would be classed as chronic as you've had it for a few years so maybe that is why your haemo didn't mention it.

D.Mann
Be interested to know where you found that info regarding Claritromycin. I've just been on
www.medicines.org.uk/emc/medicine/25086#UNDESIRABLE_EFFECTS which states <1/10,000 chance of thrombocytopenia and uptodate.com states <1%

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New to all of this 2 years 1 month ago #59056

  • Hal9000
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ytsejam02 wrote: Hi Hal, no I did not bruise from the accident. I did go to the ER only because my neck stiffened up pretty quickly. Just so happened that when I went two weeks later for the platelets, it was the same ER doctor. He only prescribed muscle relaxers from the accident. I took those as needed for about 5 days or so. Never more than 2 in any given day. I took one round of ibuprofen at the hospital, and that was it.
About 4 weeks prior to the accident, I did come down with a cold (3 little girls, someone always has a cold!). About two weeks after that, I went to my ENT for sinus pain that wasn't going away after the cold. He put my on 3 days of 30mg of prednisone, and 14 days of clarithromycin. I finished those about 2 days prior to the accident. I was take Advil sinus and cold once or twice a day, depending on the sinus pain while on the antibiotics.
It certainly seems awfully coincidental that this would occur so quickly after the accident. But there doesn't appear to be any obvious connection.


Thanks for the info Jay.
Don't let my odd questions disturb you. I'm trying to associate/categorize reported ITP attributes into the 4 known ITP types. Because of the apparent poor steroid response, as I have as well, your story interests me.

Oh, by the way. Advil contains Ibuprofen as the active ingredient. So I take it that you had been taking Ibuprofen for 4 weeks leading up to the diagnosis.

Best of luck and hope for a quick return to normal counts.

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New to all of this 2 years 1 month ago #59057

  • ytsejam02
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Hal9000 wrote: Thanks for the info Jay.
Don't let my odd questions disturb you. I'm trying to associate/categorize reported ITP attributes into the 4 known ITP types. Because of the apparent poor steroid response, as I have as well, your story interests me.

Oh, by the way. Advil contains Ibuprofen as the active ingredient. So I take it that you had been taking Ibuprofen for 4 weeks leading up to the diagnosis.

Best of luck and hope for a quick return to normal counts.


No problem at all, and I don't think they're odd. Like I said, it's all so coincidental that it makes for a interesting story... at least I think so ;-)
Yup, I'm aware Advil is ibuprofen. I don't take a lot, and in fact when I've spoken to anyone in the medical community about my usage, they look at me like I'm crazy, because I take so little and that I shouldn't worry about it. I tended to agree with them. Even my Hema said if I took it once in awhile for an ache or pain, it's not going to matter.
Either way, I'm not going to touch Advil with a ten foot poll from now on. Generally speaking, I had never had adverse reactions to meds (I'd knock on wood, but seems like that boat might have sailed with ITP). If Tylenol works just as well, I'll go with Tylenol.
As far as what I was taking in those 4 weeks, I would describe it as "as needed". initial cold I probably took it 2x per day for a few days, then as that went away, 1-2x per day depending on sinus pain. Then I went on the antibiotic, and it was more of the same, maybe 1, maybe 2, maybe none. On average, I probably took less than 1 per day.
Interestingly, the sinus pain persisted through the antibiotic course (probably was more viral than anything else). After the accident, and up to and including today, I've been sinus pain free.

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New to all of this 2 years 1 month ago #59059

  • D.Mann
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www.drugs.com/sfx/clarithromycin-side-effects.html
Rare •Abdominal or stomach tenderness
•fever with or without chills
•nausea and vomiting
•severe abdominal or stomach cramps and pain
•shortness of breath
•skin rash and itching
•unusual bleeding or bruising
•watery and severe diarrhea, which may also be bloody
•yellow eyes or skin
Hematologic

Decreased WBC (less than 1 x 10[9]/L), platelet count (less than 50 x 10[9]/L), and hemoglobin (less than 8 g/dL) were reported in up to 4%, up to 4%, and 3% of patients, respectively.[Ref]

Common (1% to 10%): Decreased WBC, decreased platelet count, decreased hemoglobin
Uncommon (0.1% to 1%): Leukopenia, neutropenia, thrombocythemia, eosinophilia, increased prothrombin time

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New to all of this 2 years 1 month ago #59060

  • Sandi
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Jay:
It's a good possibility that the antibiotic triggered the ITP. If I had to guess, that would be it. Your counts may have taken a slow dive and were not low enough when you had the accident to cause bruising. You'll probably never know. I was diagnosed about 6 weeks after having a nasty cold. I also had chronic job stress going on at the time so who knows? I believe that sometimes there isn't any one thing. It can be a combination of things that causes a cascade leading to disruption of the autoimmune system. Knowing the actual trigger does not always change the outcome.

ITP can be acute, which means that it can go away within a year. That is always a possibility. You can't know that though until it happens. I've seen it quite a few times over the years. I had an eight year struggle and then went into remission (2004). Right after that, I was diagnosed with Lupus. I'd rather be dealing with ITP. Perspective helps sometimes. People sometimes go into this thinking it's forever and that is not necessarily true. If it does end up going on for a long time, it generally becomes an inconvenience instead of a life-altering thing.

I understand the grieving, but you still have the same life. The one that you thought you had is still there. In time you will see that. Very few people ever have to make major life changes and that usually only happens when counts won't go up and their jobs require higher counts. Having ITP just means that you have to add some blood work and doctors appointments to your days. Sometimes you have to deal with side effects from meds, but other than that, you can still do everything that you did before. The downside is that ITP isn't something that you 'get through'. There isn't a foreseeable light at the end of the tunnel. It's not a set six months of treatment then it's gone. But there can be remissions and you never know when that will happen. It could happen when you least expect it or better yet, in a short period of time. Rituxan is known to cause remissions that, on average, last a year if a patient responds. If you got that route, you could get a nice break very soon.

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New to all of this 2 years 1 month ago #59065

  • ytsejam02
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I find each story of how people came to be in this situation fascinating.
For what's it's worth, I'm feeling much better today. Yesterday, was without a doubt, a low point.
I'm hoping that it's mostly routine Dr appointments and some blood work, meds (occasional, or does that depend on the med?). My perception of my own reality has been altered, and that's what I'm wrapping my head around.
Regarding perspective, believe me, I get that. My neighbor is only a few years older than me and dealing with mesothelioma. That's half the reason I feel so selfish about my bout of self pity.
As always, thank-you for your response!

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New to all of this 2 years 1 month ago #59066

  • Sandi
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You'll get into a groove with Dr. appointments and labs. I used to get blood work on my lunch hour. I'd just show up at the Hemo's office and they would take me back for the draw, then I'd leave with a copy of the results. I worked it out so I didn't see the Dr. much, my choice. I didn't see a point to it, especially after the first few months. I'd make my appointments at the end of the day so all I had to do was leave a little early. I was lucky to be only 20 minutes from their office. If I needed treatment, a nurse or the doctor would call and we'd discuss it. At first I did what they said, but after a while, it became a negotiation. 60 mg's of Prednisone? No way! I'll do 40. That was after I knew how I responded.

The appointments slow down in time. It always seems a bit crazy at first.

You're not being selfish. Everything that you're feeling is normal. I'm just trying to let you know that all of that will eventually ease up. It just takes time.
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