Promacta and pulmonary embolism....

I transitioned from N-Plate to Promacta late October 2014 with much ease and success. My hematologist suggested the alteration as the pill seemed less complicated than the weekly injections. I had suffered severe migraines when the dose of either med was too high which resulted in extremely high counts and debilitating headaches. We slowly tapered the Promacta dose down to where the headaches were tolerable and my counts remained over 100 and no higher than 350. I was very pleased with the medication and my counts and with the ease of the daily pill, I really went on with my life with no day to day concerns about counts or side effects. No checking for petichae or limiting activities which I had been plagued with for so many years.

I had a severe charley horse in my leg in early August and attributed it to dehydration. I hopped out of bed and went to the gym where I noticed abnormal fatigue when working out and shortness of breath. I had pain for days in my chest and side and then my back and it all worsened when I took deep breaths. I carried on for a few days before getting it checked out. It turned out that the pain in my leg was a DVT (Blood clot) and I threw it to my lung and possibly heart when I exerted myself with exercise. Recovery was extremely painful and far too slow for my liking but I know I am fortunate to be alive.

I am not sharing my story for sympathy or to incite fear but I want others to know the symptoms of pulmonary embolism and DVT when taking these meds. I was complacent in not being mindful of the risks and what to be concerned about. I did not even consider that the pain I had was a blood clot as I was so used to concern associated with bleeds, I had queried whether I had internal bleeding from working out too hard!! I am fortunate I had an astute doc at the clinic who sent me to the ER.

There has been no confirmation that the Promacta caused the DVT/PE but this is the most suspected cause. I am currently on the same dose of Promacta along with a blood thinner. It seems counter productive but my counts have remained fine. I hope to get off the Promacta but have no other current treatment options and really just wanted to get through the crisis and regain my strength before fiddling with the dose/ tapering off.

This is a real concern that needs to be addressed from time to time. Thanks for sharing your story. It's important to maintain counts around 50k for this reason....counts that are higher can lead to thrombosis. You are very lucky to have been diagnosed before it got worse. Sometimes it hits the lungs much faster than a few days.

There are a few factors with ITP that can cause blood clots; TPO's are only one of them. I'm glad you're doing well now.

Thank you, Dyan, for sharing your experience. I hope it helps to make readers aware of the risk of thrombosis with TPOs. The side effects of treatment - especially over-treatment - can be a greater risk than the risk of bleeding. It is important to balance the risks.

When treating ITP with TPOs such as Promacta, there is a rapid turnover of platelets. As platelets are produced and destroyed very quickly, the platelets remaining in circulation are very young, and as a result, they are larger and stickier than normal, and thus more prone to unwarranted clotting.

The instructions for Promacta state, " After initiating Promacta, adjust the dose to achieve and maintain a platelet count greater than or equal to 50 x 10⁹/L as necessary to reduce the risk for bleeding." Some leading ITP experts recommend a safe range of 30 - 50k, with 50k being the targeted maximum rather than minimum platelet level.

Antiphospholipid syndrome (APS) is an autoimmune condition which carries increased risk of blood clots. Having ITP increases the chances of having APS. Be sure to ask your hematologist whether he has checked for antiphospholipid antibodies.

Hi Rob.
Much thanks for your explanation and thoughts.
I have been tested for APS and was advised I was not positive and this was not the cause. I do have a lupus diagnosis with no active symptoms other than the platelet issue. I argued for years about the count being over 50 and was repeatedly dismissed by 3 hematologists ( I sought alternate opinions when the migraines started and the count was over 700 on NPlate). Once we agreed on lowered doses, I became apathetic about any risks as my symptoms abated and I enjoyed the freedom from worrying about counts, etc. Your point about the concern regarding treatment risks is so valid~ I had no hospital admissions when my count was always under 10 and was admitted with the PE and it was life threatening. My goal is to go back to no medication. I would prefer low platelets rather than risk of another clot and being on blood thinners poses a risk of bleeding regardless. Just my opinion but the clot was far worse than any injury or bleed I personally have endured to date.

Thanks Sandi as well for your kind thoughts.

Dyan
Thank you for the post. I wondered what is your current dose of promacta?
Thanks
Emily

Dyan:

What criteria was used to diagnose Lupus? Just curious.

Anyone who has had a clot has said the same thing...it was worse than the low counts. I cannot believe that your doctors dismissed concerns about high counts. Did they not read the manufacturer's recommendations? I have seen enough clotting here to feel the need to warn people of that possible complication. It should be taken seriously. I am so glad that you brought this to our attention. I wonder how many go unreported?

Good luck with managing both conditions and I hope things balance out soon.

Hi Emily. I alternate the dose 25 mg, 25 mg then 50mg the third date then repeat. I hope to drop to 25 daily next appointment. This is the same dose I was on when I had the DVT/PE.

Oh Sandi, you are testing my memory on that one!!! Does this sound correct~ ANA, antiDNA, anti cardio lipid and MDSS, etc. I was diagnosed as an adolescent an am sure the diagnosis is correct. I was symptomatic with butterfly rash, fatigue, joint pain, etc. it sort of morphed (in my mind anyway) to the ITP and the lupus symptoms were not bothersome once the platelets tanked.
Yes, I brought the recommendations in hand, highlighted to many appointments but all 3 were all too pleased with the great results and I was assured to not be concerned. I have never been in the 50 range since being on either TPO. My hematogists are highly regarded and well versed in the drugs and involved in the studies.
I appreciate your feedback about sharing as I didn't want to upset anyone or cause fear but wish I had been more aware.

Have they said anything about it since you had the clot?