TOPIC:

We'd like to know who has had a blood clot while having ITP. Please let us know what happened, why you had the clot and if you have any known clotting disorders.

Guilty.
Day after spleen surgery my counts dropped. Hemo did 2 IVIG infusions to get platelets up due to fear of bleeding. My count spiked above 350 the next week and I developed a Portal Vein Clot between the colon and liver.

I also got a blood clot in my portal vein after splenectomy 3 years ago. I have factor v Leiden a blood clotting disorder as well as itp.

I had a stroke due to a clot in 2011 my platelets sky rocketed because of nplate I also get superficial thrombosis every now and then when I get an iv, last one they thought it was a dvt but luckily it wasn't.

I was just diagnosed with deep vein thrombosis (DVT). I was taking 25 mg of eltrombopag (Promacta) daily for my ITP when I started feeling pain in my left calf and ankle. There were no noticeable signs of swelling or redness, but the pain and discomfort was undeniable. It felt like my calf was engorged, and I limped to avoid putting pressure on it. I thought I might have torn my Achilles, so I just iced and elevated my leg until my appointment with my PCP.

I met with my PCP a couple days after the onset of the calf pain. I explained that I may have twisted my ankle, but I was not sure. I also asked if it was possible that it was DVT to which she said most likely not. I was instructed to immobilize the leg for 4 to 6 weeks and to check back in with my doctor if the pain hadn't subsided. I heeded her advice, and the pain eventually went away in a week. My platelet count at the time of the appointment was 33k.

Then, just 2 weeks after the pain subsided, I woke up and stepped out of bed with the same calf pain and discomfort from 2 months previous. Due to my low platelet count, I was now taking 75 mg of eltrombpag. Coincidentally, I had an appointment with my hematologist for a routine platelet count. I was at 96k. I also voiced my concerns about the leg and highlighted that I did not perform any physical activity that may have caused injury to my leg. She mentioned it may be possible that it is DVT and sent me in for an ultrasound. Sure enough, they found a blood clot in my left calf and diagnosed me with DVT.

My hematologist prescribed Eliquis, a blood thinner, to prevent the clot from growing. I am to take this for the next 6 months. I am currently still on 75 mg of eltrombopag as well. I meet with my hematologist for a check-up this week and will update everyone with any useful information!

Wow - I'd say that is a huge miss for your PCP. You were lucky. Missing that could have cost you your life. If it ever happens again, be sure to push for an ultrasound (even if you are not on Promacta). People with ITP can be prone to blood clots even with low counts and even if they are not taking a TPO.
Thanks for sharing your story!

Tell me about it! I was certainly lucky and incredibly grateful nothing horrible happened. Thank you for your tips!

As for what's been going on with me currently...

Following the DVT diagnosis, I took sick leave for 2 weeks to prevent exertion and to get over a minor cold. At this point, I was taking the following:

-75 mg of Promacta once daily
-10 mg of prednisone once daily (for dropping platelets)
-5 mg of Eliquis twice daily
-10 mg rosuvastatin

The pain in my leg was subsiding, I was feeling better, and I decided to resume work 3 days ago. The day wasn't particularly stressful, and I was glad to be back and ready for my life to return to normal. I drove home and went to pick up some dinner for my girlfriend and me when I felt a dull pain (5/10 pain) in the left side of my chest. Simultaneously, my left arm began to feel tingly and almost numb. I'm aware that these are potential symptoms of a heart attack, so I pulled over to get my bearings and update my girlfriend with a text. After a minute or two, the chest pain and arm tingle subsided (total of 3-4 minutes from the start), and I felt fine but a bit concerned.

Because of my recent DVT diagnosis, I went straight to the hospital to get checked out. They tested my blood, monitored me on the EKG, and gave me a CT scan with contrast. My blood looked fine. There weren't any enzymes present that indicated dying heart muscles. EKG looked great, and my vitals were tip-top. But, they did find something on the CT scan: 2 acute pulmonary emboli in my right lung.

My attending doctor did not attribute the chest pain and arm numbness to these PEs as they are in the right lung and concluded that the pain may have been musculoskeletal. Their hema suggested Lovenox for the time being until I was able to see my primary hematologist, so I got the injection. I spoke with my hematologist the next day, and she suggested keeping my drug regimen the same except to switch Eliquis with Lovenox. She concluded that I got the PEs while on Eliquis and that it was not working as it needed to. She also hit me with some results from additional blood tests that she ran that I am positive for lupus anti-coagulant which makes me more prone to clotting. She thinks this risk factor in addition to the potential increased clotting brought by Promacta may be the reason why I had DVT.

My takeaways from this entire ordeal:

-If you are taking Promacta and your calves or thighs hurt greatly with no obvious cause, demand an ultrasound. No matter your platelet count. Just do it. There was no obvious cause for my calf pain, and I made a story that would explain the pain, which was completely wrong and potentially fatal.

-Don't be stubborn and just go to the ER if you have a new chest pain event. I was resistant to go because I wasn't sure what pain I felt. As a former smoker and a current sedentary office worker, I get all these aches and pains in my body regularly, and I thought that I may be overreacting if I went to the ER. While we didn't find the cause of the chest pain on the left side of my chest and my tingly arm, we spotted the PEs in my right lung, determined Eliquis wasn't working and switched to another beneficial drug, and most importantly got peace of mind.

-Do your due diligence and research. Own your condition. Everything comes a lot easier when you know about your condition and your drugs. You'll naturally be more confident in speaking with medical personnel, ask the right questions, and ultimately optimize the treatment you receive.

Hope this helps!

Jonny - thanks for your story. That is quite scary. The Lupus Anticoagulant can cause problems and isn't anything to play around with. Lovenox is probably the better choice. One possible explanation for the chest pain and arm tingling could be microclots. Something was going on and if you hadn't had that, you wouldn't have gone to the hospital. You will have to be vigilant for the rest of your life and never ignore any symptoms. It's a shame that doctors don't test ITP patients for APS prior to starting the TPO's. I have the Anticardiolipin Antibody and have a risk of clots too, but so far so good.

I had a PE while on Revolade. The medication is the suspected reason along with the ITP and birth control pill. Now, I am on xarelto (blood thinner) likely for life, in addition to the Revolade. Every time my count drops below 10, I go off the xarelto until my count is above 30. I have been getting ivig to boost me as needed and am on an increased dose of Revolade now too. (75mg). My ITP has been very unstable lately after years of safe counts on a low dose of Revolade.

The PE was horrible. I thought I pulled something at the gym and had no idea I could even have a clot with low platelets. I am most grateful to the docs that figured it out. They initiallly were baffled because I kept saying I had my spleen removed but they found several accessory spleens that had grown back in the wrong quadrant!

I'm so glad that your doctors were thorough. Some will totally overlook a blood clot if they know the patient has ITP. I'm sorry that happened to you. I do hope you stopped the birth control?

Hi Sandi, ITP really bad two years ago at this time. I took N Plate and went back to remission. This summer I had another scare. I've never been diagnosed with blood clot but after cervical spinal surgery I had serious swelling that shut off my airway. ICU four days. Had a dopler scan and D-dimer a few weeks later as hugely swollen feet and hands. Pretty much back to normal. My Hemo ordered a bunch of bloodwork for anticoagulant pannel. Was wondering if anyone has had alpha-2 antiplasmin activity or plasminogen activator inhibitor activity test done. Looking for what the results mean by values.

Have had blood clots on 3 different occasions - pulmonary and veinous(sp?). Each incident included multiple clots.

Were you on N-Plate or Promacta at the time? What were your counts?

Hello Sandi,
You know Kimberly's story. More clots than we can count. 20 + IVR surgeries, TIPS procedure, bowl resection, PE, brain hem. And now six vavacies bandings.

Question for you. Have you seen any relation to low hemoglobin and memory loss. Kimberly' is now also fighting diminishing iron and low hemoglobin on top of everything else. She recently had some pretty strong memory loss.

No, I'm sorry, I don't know of any connection. What are her doctors saying? That poor girl. She's been through so much.

Not sure yet, he's ordered a whole series of tests. Think she'll have another brain scan to rule out another clot. She's scheduled for another banding in two weeks. Need to get her numbers up so they can do it. They'll address a possible uncer created when they did the last one as well as do any banding if needed.
By the way after so many years of prednisone she's developed sever bone density loss. Now every night when I give her an arixtra injection for her chronic clotting, she now gets a second injection, forteo.

Update
A
Hemo dropped below 7. At the hospital getting two units. That should pump her up for a while

Is anyone out there with a history of ITP who has had the same thing? If so, can you please respond?

My platelets have been good. Holding between 200,000 and 300,000. I'm happy to say that I have been off of Prednisone since February after a cycle of about 2 years of ups and downs, but I have been having terrible headaches and neck pain for the last 3 months. I went to my primary doctor twice, the chiroprator, even the ER with weird symptoms. Then, 3 weeks ago I had a seizure. So I found out that I have a cerebral venous sinus thrombosis...a blood clot in the back of the brain in the vein that drains the blood out of the brain. I also had a small bleed. I was admitted to the hospital and started on Heparin and switched to Coumadin and sent home after 5 days. I am also on Zonegran which is a anti-seizure med. I have been on the meds for 3 weeks and have watched my platelets start to drop. I have spent the last 30 years of cycles trying not to bleed. Now I am on a med that puts you at a dangerous risk to bleed. No thank you! I cannot find any real data on people with ITP who have had a CVST. I am being told this is the standard treatment and that I should be on this for at least 6 months. The neurologists won't even listen to me when I try to talk to them about ITP. I spoke to my Hemo yesterday and I asked if I can be switched to aspirin instead of Coumadin. I don't want to stay on this. Now I have to have my platelets and INR monitored. My hemo wants me to go see a clotting specialist to be tested for clotting disorders, which I have already been tested for and always come back negative. I will do it again, but in the meantime, I am not going to sit here waiting for the drop in platelets. The other thing is that Zonegran is from the sulpha family which I have been told is a no no for ITPers as it can cause a drop in platelets. Can anyone else confirm this?

ITP and clotting disorders can go hand in hand. It can be difficult to juggle for sure. It's a good idea to get the tests for the clotting disorders because they can be acquired and a past negative does not show what might be going on now. I have antibodies for a clotting disorder (Antiphospholipid Syndrome) and they come and go. Sometimes they are elevated and sometimes they are not.

I know that you are worried about your platelets, but blood clots like that can be very serious. Aspirin probably will not be strong enough to stop a clot from forming if you do have a clotting disorder. I take daily aspirin for prevention but everything I have read states that there is no proof that it works to prevent a clot if one has a clotting disorder. There is a lot of information out there about ITP and clotting. Maybe not specifically CVST, but the general term 'thrombosis' can be searched.

Any drug has the potential to cause a platelet drop. I've had drops from drugs that didn't mention thrombocytopenia on the list and had good counts from drugs that did list it. Try not to worry so much about your platelet count right now. I know you fought hard to get there but that is a pretty high count.

Here is a good video for you to watch.
www.onclive.com/insights-archive/immune-thrombocytopenia/risk-of-thrombosis-in-patients-with-itp

I may be off topic here, but my thee year old son has newly diagnosed ITP and I had a DVT in my left calf in my 20s and possibly an embolism somewhere in my head (CT scan was clear but the pain in both went away gradually after I stopped BCP at my PCP's orders); both were due to BCP that was later found to have a particularly high risk of DVT - Diane 35.

I am chiming in to say, in case anyone reads this with symptoms, that the pain of DVT need not be severe. If you have any pain when you step on your leg or flex your foot, and it's in your calf, get it checked out. To me, if felt like a needle stab into the muscle, but it was not a very pronounced sensation. The one in my head was in a very specific location and felt like a thin needle, but it didn't come or go -- it felt very consistent in terms of level of pain (low), until it finally started letting up.

My son's docs know about my episodes and are looking into possible familiar causes as a result. My platelet counts are normal. My son's PTT and aPTT are a few seconds above the normal range, so I'm hoping he is not having a clotting issue on top of his ITP. Apologies if I'm off topic!

Maria - have you been tested for Antiphosphilipid Syndrome? I'm asking because there could be a connection.

Sandi, I haven't, thanks for suggesting it.

Hmmm. Did they give you a reason why you are prone to blood clots other than the BCP's? No testing done?

No testing. This was in my early 20s. I think the particular BCP is off the market now due to the high incidence of blood clots.

This is one report on this wretched BCP:
www.thestar.com/news/canada/2013/01/31/diane35_deaths_of_11_canadian_women_linked_to_acne_drug_compared_to_four_in_france.htmlhttps://www.thestar.com/news/canada/2013/01/31/diane35_deaths_of_11_canadian_women_linked_to_acne_drug_compared_to_four_in_france.html

Late to the game on this message, but I had a blood clot in my brain at 22 after 5 months of ITP treatment. At the time, I was taking promacta and an estrogen birth control pill. With the promacta, my platelets were at 90 when I was admitted to the hospital. Testing there showed that I was also positive for Lupus Anticoagulant/Antiphosphiliped Antibodies Syndrome (same thing). I ended up having a surgery where a catheter was placed in my thigh vein and directed up to my brain to "suck" the clot out and spent 10 days in the hospital.

Wow. That was a triple whammy. I'm glad you're ok!

I have not had a clot.
But I have concerns. My hemo is/was not concerned in the least.

Sandy, I'm still having trouble finding a doctor who understands APS and ITP and how being on Promacta with the APS on board is concerning. My current doctor has said some things in the past that were nonsensical. He actually said to me more than once that I was worried for nothing and that a count over 100 was nothing to be concerned about. My very last visit, he indicated that maybe it should not be over 100. It was a strange turn of events. No explanation given.
I did see another doctor for a second opinion. She agreed I should be on Promacta, but I did not get the impression she was much more experienced than the first physician. So, I am going to yet another doctor later in May.
Question....I was given the impression that APS is sort of on a spectrum .... and that mine is less severe than others. I can't recall who said this to me, I think it was my current hemo. Does this sound accurate? I'm also on a minuscule dosage of Estrogen (bioidentical) along with a capsule dosage of Progesterone. I don't wish to tell you the dosage here, but I can tell you this: I told my first gyno I wish to have a small dosage. I was not on Promacta at the time. She assured me it was a very small dose. Since then, it’s been reduced (halved) and I believe it would be considered tiny now. I'm trying to find the bare minimum to take and not have bad hot flashes. So...my prayer is a teeny tiny dosage of estrogen along with the teeny tiny progesterone will not be much of an issue. I do believe it is literally considered "miniscule." I'm taking the time to make sure I do not take one itsy bit more than I need to keep my hot flashes decent. Hopefully, I can be off of it completely soon.
I continue to look for a doctor who is more knowledgeable and willing to take my situation seriously. I did FINALLY get some indicators that this current one is FINALLY (very last appointment) taking this a little more seriously after pleading with him to do so. Sadly, he seem to think because I wasn’t a doctor I didn’t know what I was talking about. And, like a lay person (sad) he just wanted my counts over 100 not factoring in the concerning mixture of realty in my case that causes a problem ...namely a clot risk. He finally mysteriously woke up a bit. I think another doctor spoke to him. But...I am still going to see another doctor. My current hemo.....hmmm I suppose I'm thinking too llittle too late. And after saying one thing repeatedly for so long, I don't know where his head is at. If I can figure this out...certainly he should of...especially with me expressing my concerns repeatedly. This has been stressful and concerning for me.
It’s interesting and concerning to see so many itpers who have had blood clots.
But , as I mentioned on another thread here, it seems SOME doctors are not very familiar with this real possibility and/or have not fully learned about TPOs.
My main question: can APS be on a spectrum...some situations worse than others?
Thank you.

September 2019 blood clot in lower Aorta. Piece broke off near right leg amputation. Possible cause overdose of NPlate or Dexomethizone, plus 500 mcg NPlate spiked my platelets to record high above 967. Had Aortic stent placed to eliminate clot, and a lower leg Fasioctomy to save my leg. Now have been on 200 mg Tavilise, but it seemed to work up into 500 count first two weeks now no response to it. Upping dosage to 300-350 mg. History: 4 years Chronic ITP. Steroids work as rescue only for me. IvIG woks for 2+ weeks, Rituxan worked for 16 months one course out of three separate courses, then failed. Promacta had zero effect for me. NPlate is still the only med that so far gives me platelets. Tavalise the new drug (experimental more or less) stopped working for me two weeks after starting it. Still have my Spleen. PS the surgeons who saved me have me on Eliquis blood thinner now as long as I'm above 30 counts to prevent anymore clots. I go below 30, and stop the Eliquis thinner (5mg twice daily).

camperguy65 wrote:

... Tavalise the new drug (experimental more or less) stopped working for me two weeks after starting it...

camperguy, how about this? Is it possible the trailing effects of Nplate overlapped with Tavalisse is the reason why Tavalisse worked for the first two weeks?

If two ITP antibodies are working against someone, and Tavalisse is only effective against one of them, a simultaneous TPO-RA becomes required.

HAL, I was on N-Plate for year and a half and got a clot. I began Tavalisse about 5 weeks after the clot. N-plate was stopped immediately, when I got the clot. There were weeks between stopping N-Plate and beginning Tavalisse. Tavalisse took a full bottle, or one month before I began showing response to it. I was in rehab after the ER and ICU, etc. I began Tavalisse in the last two days before leaving the rehab which had been 5 weeks since the clot. My platelet count had shot to over 965+ when they took my blood within 24 hours after my clot. That lasted for several weeks, which I had to wait a week to get my count down to have surgery to save my leg, and to get my Aortic stent placed because it was so high that they were afraid it could cause me another clot during or from those needed surgeries. I truly think that I was overdosed on N-Plate by the nurse, or nurses that administered it to me the previous day before my clot. The one nurse called over a 2nd to sign off on the injection, which is protocol, and they got into a bit of an argument. That concerned me. Then the original nurse wound up injecting me. The next day, I got the clot. P.S. It took Tavalisse full month before it kicked in and it's never stopped working for 6 months now, BUT I have ran into abdominal problems on Tavalisse. I'm now in the process of converting over to Doptelet, which scares me because of the potential clotting issues, but the abdominal pain and problems Tavalisse has caused me, I cannot live with. My Dr. and I are trying to make it through the next couple years until the new drug that you had mentioned in my topic post PRN1008 gets approved by the FDA. That drug in the pipeline right now may work for me same as Tavalisse has without the risks of clots like the TPOs, and without the abdominal issues because of it being an injection and not oral. It will be the injection version of the line of drugs like Tavalisse that blocks pathways in the Spleen from destroying platelets, rather than boosting them in the bone marrow like the TPOs (N-Plate, Promacta, and Doptelet).