I have been on this site everyday, or at least everyday that I have been able to use an electronic device, for about the past 2 months strait and finally decided to create an account so I can share my story and join the discussion. Names William, 6'2 around 210lbs, Living in Texas. I was diagnosed mid April after returning from an overseas trip. I'm sure I have had low counts for years and just didn't know, years ago I had walking phenomena and ever since then I would occasionally cough up small amounts of blood. I just figured I had some small permanent damage to my throat or lungs and lived with it. Fast forward to 2 months ago, I eat a steak and bite my cheek. I get a sore and it bleeds, then more and more show up. I, after 2 days of this, go to the clinic where they are unable to get a platelet count from me, I didn't even register on the first couple draws. I was told to go to the ER so I drove myself over. Couple Platelet infusions, IVIG, and 4 days in the hospital, they release me with the ITP diagnosis and some antibiotics for again, Phenomena. My Hemo puts me on 80mg of Prednisone and we plan out the taper after my next meeting with her. My counts stay up pretty well and we taper it down fairly quickly and by the end of the month I'm set at 40 and we are planning to do 10 down a week for a bit. On 4/24, 10 days after I was admitted the first time my counts were 146.
Then the real fun happens, I wake up to get ready for work and I'm completely out of breath. Back to the Clinic and this time I get a nice ambulance ride to back to the ER. My Lungs were mostly full of blood and my counts had tanked back down to 2. I spend next 12 days in the hospital, couple forced comas and many many tests to make sure that I was infection free (Minus a cold, I had a cold). I end pretty beat up after the fact, however it does seem that my Phenomena was blood sitting in my lungs from my first release. My hemo suggest a splenectomy but I am very much against this as let her know as much. As I get released from this visit I get tested daily, IVIG and 100mg of steriods get me back up to 266 then I slowly start to drop. I keep an eye on it knowing that for most people and in general above 30 is good safe numbers, and I hold myself to that getting checked, taking care of myself as I can. Then comes a long weekend and I think I have another cold or some sinus drainage.
Its now the end of May, and I decide to go back to the Clinic to make sure that I'm not sick (Pred immune suppression and all that) I end up getting new count that day as well and I'm sitting at 55 and am told I just have sinus drainage. I feel golden for now, till I wake up and cough up a spec of blood. I pack a bag and drive myself to the ER. Counts are at 48 but I am, once again, bleeding in to my lungs. We caught it early enough to avoid any major issues, but another week in the Hospital. Hemo brings up splenectomy again, I let her know that will be my last choice, I do agree to meet with a surgeon for consultation, however I want to try other options. She brings up Rituxan and Promacta as options. Looking over my options I ask to do Rituxan treatments. I leave the hospital, on o2 with 120mg of Pred daily.
My 4th infusion is Monday, I am still on 90 Pred, but my counts are sitting at 141 for the past few days. My Hemo is on gone next 2 week but has an agreement that if my counts get below 100 they will give me more IVIG (because I seem to bleed at high numbers) but I'm feeling good about the Retuxan. Hoping I can keep the numbers where they are and just get off the Pred (because being always hungry and diabetic from meds is terrible!)
For the longest time my gums would bleed when I brushed my teeth that has not happened since my platelets have been up, beyond that I do not know honestly. My lungs are still damaged (I assume) to the point that I don't want to risk my counts getting low enough to warrant another hospital stay. My overall assumption is I have had ITP for a while but no major issues till I got sick while on my trip to Japan and the different strain caused my body to go in to a full blown attack on my platelets.
Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006.
Last Count - 344k - 6-9-18
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Has your doctor said that damaged lungs are the reason for the bleeding? Just asking because I've never heard of this before. I've been here since 1998 and have never heard of anyone bleeding in their lungs. It's unusual to say the least. Broken blood vessels in the throat from coughing would make sense.
The pulmonologist/ICU doctor that did treatments when I have been admitted the last two times ran just about every test he could think of and couldn't find any reason for the blood coming in to my lungs other than them being damaged from some sickness before and never fully healing. Which to me would make since if they have damage and scar tissue when my platelets get to low, it would be a "wound" that I could bleed in to. It's not a quick hemorrhage as far as I can tell, at least now, blood just starts slowly seeping in but that is still a major issue.
Welcome William. A couple of questions come to mind.
Did the hema doc run tests like Prothrombin Time to see if there is something funny going on with clotting?
Did the doc mention why she didn't want to do a Dex pulse, or, does she consider you not that responsive to Pred?
Had you had any blood tests in the recent past to indicate either a normal platelet count or one that had fallen to the lower normal range?
Generally when I am hospitalized they give me Dex until or right up till my release at which time I transition to the Pred dose (assuming i remember my drugs correctly always a lot going on). As for the tests I have a lot of tests done but looks like they did test Prothrombin time at least twice with normal results while my platelets where sub 5. I had not had any blood test before this since, my best guest, would be 2007 when I was in a car crash and had to be life-flighted to a hospital and have my elbow surgically repaired. I don't personally have any results from then but if my platelets had be low I'm sure something would have come up before surgery.
Edit: I consider myself non-responsive to the Pred as even on higher dose my platelets still dropped as the IVIG wore off. I guess i should say my hemo is not the most knowledgeable one I could hope for, but then I have always been one to take control and she does fallow my lead if I ask for specific treatments or test when possible so that works for someone like me who spends way too much time looking over everything.
Ok. So if you don't respond to steroids, would your latest count of 141 be left over IVIG from you last hospital visit? Thus getting about 4 weeks from each IVIG treatment?
The walking Pneumonia issue sounds pretty severe. I remember getting a lot of congestion from my 5 day IVIG treatment. Do you suppose it would be a good idea to start NPlate or Promacta if counts fall down again? Use one of those as a safety net instead of IVIG? Your doc wanting to give IVIG if counts go under 100 says a lot.
Well the walking Pneumonia was years ago, I don't really get any side effects from IVIG. I will get a new count before my last treatment in the morning, here's to hoping I'm still around the same or better.
As for getting the IVIG at 100 its simply because I started bleeding in to my lungs last time at counts around 50 so we do not want me to get that low and risk that happening again. So keeping it higher is just safe for my particular case. At least till we can be sure my lungs have healed up completely from the last two bleeds. Using one of the other two as a safety net might work, but that is more insurgence approvals that we would need to wait on.
I was doing really well, from last wed till monday 141, then today dropped to 100 so I have ivig tomorrow and next day. I do have a question for anyone that may know. I may have had shrimp, which I'm allergic to slightly, could that have caused the large drop in 24 hours?
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.
Thank you received: 7
That might depend on your school of thought. If you subscribe to the idea that allergies and food sensitivities can cause inflammation, and inflammation causes your immune system to ramp up, which of course is attacking your platelets, then you can rationalize eating such foods could have an effect. That's an oversimplification, but the general idea.
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