PMR and Pulmonary Embolisms

@neztrop, My PMR has been in remission for the past 6 years but I developed a DVT in my right calf followed by a POE in the lungs a little over a year ago. I believe my POE and DVT were COVID related but don't know for sure since I haven't had any other blood clot related issues. I was started on 5 mg Eliquis twice a day and then switched to 2.5 mg twice daily which I'm still on. I have a follow up appointment with my cardiologist in April.

I remember the extensive, bilateral and multiple pulmonary embolisms I had. I spent a couple of days in an intensive care unit. The only CT-scan down was of my lungs which seemed to impress quite a few doctors. They had never seen anything like it before. There were so many blood clots throughout both of my lungs the doctors weren't quite sure how there was still blood flowing through my lungs. There were conversations outside my hospital room speculating about the probable cause. The high doses of prednisone I was taking at the time were frequently mentioned as a possible cause. However, the final determination for what caused my pulmonary embolisms was idiopathic and unprovoked.

"Warfarin for life" was my treatment. I took warfarin for 10 years until Eliquis was offered as an alternative to warfarin. My risk factors were reevaluated but the determination was I was more at risk of having a bleed than having another pulmonary embolism. I was off prednisone so that was also factored in. PMR seems to be well controlled.

"Current use of oral corticosteroids is associated with increased risk of recurrent PE. Whether this increased risk is caused by oral corticosteroids themselves, or by the underlying disease, or both, needs further investigation."

I've been on Eliquis/Apixaban for 9mths, starting just after my first PMR flare while reducing to 6.5/6mg of prednisone. I got a large DVT clot in my leg just after the flare, which I put down to the increased inflammation and/or the sudden rise in prednisone dose because of the flare.

Start dose of Eliquis was 10mg twice a day, reduced to 5mg twice a day, then reduced to the maintenance dose of 2.5mg twice a day after 3 months. Been on the maintenance dose for 6mths now. I have a doppler ultrasound tomorrow to see if the clotting has cleared and I can stop the Eliquis.

With clotting being a higher risk while on prednisone, especially for those of us with a history of clotting problems of various kinds, the diet should be checked for high intake of vitamin K1 which increases clotting. Having checked what I eat, I've found the two handsful of arugula/rocket I eat every day in salad is very high in K1, so as much as I love it, it has to go.

Yep. Me too. Combination of pmr startup and long Covid. Damn bad mix. Had a whole mess of blood clots in my leg and lungs. A really big saddle pulmonary embolism caused me to hit the floor at 3am. Could have killed me. I woke up on the floor with the dog frantically licking my face. In hospital for 10 days. Eliquis for life now. So depressing but hey not dead. Great that this got caught ! I hope you are feeling better.

Wow. Sounds scary. Thanks for sharing this. I did just read an article linking PMR to PE, especially in those below 65. But I didn’t look if they linked it to Prednisone.

Thanks for sharing this. Glad you’re still with us and I’m glad they caught mine when they did.

"I’m glad they caught mine when they did."

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They literally caught me. I was wandering around extremely short of breath when someone suggested I go to the nearby urgent care center. I was too short of breath to argue with them so I did.

When I got to the urgent care center my only complaint was the shortness of breath but "no more than usual." They put a pulse oximeter on my finger and that caused some excitement. I wanted to leave but some petite young doctor said she wasn't going to let me leave. I told her that she couldn't stop me. She said she called an ambulance to take me to the emergency room and that made me angry. I still wanted to leave but I decided I wouldn't get very far if I tried. I figured there would be sensible people in the emergency room.

I told the emergency room doctor about a meatloaf in the oven at home so I had to leave. That doctor said they would call my wife and she could take the meatloaf out of the oven. They sent me to the intensive care unit.

After diagnosis of PMR in October 2023 and 15 mg of prednisone, in late January 2024 I also had DVT/PE. Swollen left leg and shortness of breath sent me to the ER and three days in the hospital. 3 month course of Eliquis then which went well. They took me off the Eliquis but I’m 3 more months I was back in the ER again with the DVT/PE again. They restarted the Eliquis at 5mg and now at 6 months later to 2.5 mg. I get no where when I talk about PMR and Prednisone as a possible cause, as they say whatever the cause the treatment would be the same. Wish I had known that there was at least a chance that this might happen with a list of the symptoms. I would have watched for it and been better prepared.

The doppler ultrasound results are back and the extensive right leg clotting from 9mths ago has cleared while taking apixaban. My doctors say I should keep taking apixaban 2.5mg twice a day for a further 6mths due to some "old clotting" still there, and with the higher risk of rebound clotting if I stop the apixaban while taking prednisolone. Not happy, I would have liked to stop the apixaban, but their explanation appears sound, so I'll continue on with it.