Anyone have multiple pulmonary embolisms and autoimmune conditions?

How long have you been on blood thinners? I started on them a month ago after suddenly getting a big leg DVT clot, which I guess was caused by having to raise the dose of prednisone after a flare. Your recurrent lung clots would be a big worry for you. It just seems to be one thing after another doesn't it. Hang in there and keep holding onto hope that better days are ahead. It's all we can do for now.

I was placed on blood thinners in Feb. 2024. Diagnosed with GCA in May 2023.
In February, they found three pulmonary embolisms and placed me on Eliquis. In March, they found a tiny non-inclusive one while on Eliquis placed me on Lovenox shots and I started hemorrhaging. They put me in the hospital again got the bleeding under control switched me to Xarelto and two weeks ago found another blood clot so I have had two blood clots while on blood thinners it is like walking on, thin ice. They optimize dosage I have had venogram there are no DVTs I have had abdominal scans. There is no internal bleeding. I have had a breast biopsy. They checked the colon there is no place else to check Oregon wise. There is no blood cancers I went to a specialist who was supposed to be the all to end all of the dark horses and basically he said you have idiot pulmonary embolism try this new increase and good luck. Yeah that didn’t go over well suicide from giant cell arthritis I now M frantic from these blood clots. I’m down to one milligram of prednisone Turma shots weekly. I have been placed on a no-fly list so I am stuck in Texas just where I always wanted to be.

It isn't something I like to recall but yes ... I had multiple, bilateral and extensive pulmonary embolisms. My embolisms were called "acute" but there were some doubts about whether or not I was having chronic pulmonary embolisms. I had shortness of breath to the extent that it seemed normal to me. When the acute event happened, I thought the doctors were overreacting when they wanted to admit me to intensive care. I only admitted to being "slightly more" short of breath than usual.

I should have apologized to the doctor who called the ambulance for me. I argued with her and said "if I wanted to go to the emergency room, I would have driven myself there." When she said she wasn't going to let me leave ... I nearly lost it because there was no way she could have stopped me from leaving. She held her ground and I relented thinking there would be a "reasonable person" in the emergency room.

There wasn't a more reasonable doctor in the emergency room. Even when I told the doctor that "I had to go home because there was a meatloaf in the oven" the doctor wasn't reasonable! He just said there was a bed waiting for me in the intensive care unit. He informed me that the result of my chest CT was indisputable and that both of my lungs were full of blood clots. I insisted the doctor had the wrong chest CT.

The reality didn't hit me until a fellow nurse showed me my chest-CT. I was a nurse so I should have known the symptoms of a pulmonary embolism. I should have been dead but I swear I didn't have any chest pain. I think prednisone gave me a false sense of well being and masked that pain.

The doctors suggested prednisone may have caused the bilateral, multiple and extensive pulmonary embolisms since I was taking a high dose of prednisone at the time. In the end, the event was called unprovoked. I survived and sent home with a prescription for lifetime warfarin.

More recently, warfarin has been stopped because I'm off prednisone. My blood pressure and cholesterol levels have normalized and all those medications used to treat those problems have also been discontinued.

@mmorey52, I added your discussion to the Autoimmune Diseases support group as well.
You might also be interested in this related discussion:
- Pulmonary Embolisms (PE) That Magically Develop - No DVTs: https://connect.mayoclinic.org/discussion/pes-that-magically-develop-no-dvts/

@colleenyoung

No evidence of any DVT in my case too. I was referred to a hematologist after the fact but nothing was found that could explain what happened.

Thank-you for the link to the above discussion. The pulmonologist in the intensive care unit said he hadn't seen anything like it before. He wasn't sure how blood flow was still getting through my lungs. The nurse who shared the information with me said the pulmonologist had years of experience and had seen everything. I came away thinking I was the only person this happened to. I see the exact same thing has happened to several people.

I was more impressed that my body had the ability to clean up the mess that it made in my lungs. My primary care doctor apologized for possibly missing something and felt that I would need long term pulmonary care. I reminded him that I was the one that refused the pulmonary function test when I first started to complain about being short of breath. All the clots were reabsorbed like nothing ever happened.

It seems like there are more of us. My problem is I have been on three different blood thinners and continue to develop clots not big however they are clots stick together and keep one another posted. I have had every blood test imaginable from hereditary factors, to cancer, blood cancers, gastroenterologist, Gastro surgeon Cardiologist who did diagram to clear both my legs that had no DVTs noted. So an alleged specialist who didn’t even want to take me on as a Specialist patient. Said stay on your Xarelto and good luck. 😳

Venogram in both legs.

Thank you very much

You've all both reassured me and scared me at the same time. I have PMR and GCA. I had bilateral and saddle pulmonary embolisms. Most of the doctors swear that it has nothing to do with auto-immune. The hospitalist at least said it was a possibility. I have no other risk factors so they just shrugged their shoulders and called it idiopathic. You all reassure me because I was convinced it was all related.
I'm scared because the cardiologist swore up and down multiple times I couldn't possibly have another embolism while I'm on the blood thinner. I guess I'll have to push for more follow-up tests

Hi, there’s good news and bad news. The good news is the blood thinners greatly reduce your chances. The bad news is the blood thinners do not eliminate PE. My rheumatologist also said there was no relationship, my cardiologist wanted to take me off blood thinners after doing venogram and heart tests. My hematologist was steadfast And said no, it may be idiopathic however it still happening. I’m not sure which blood thinner you are on, but I know that there is a test for each one in terms of levels. They will tell you there isn’t one for Xarelto like I am on however I looked it up and there is a marker , your levels. Let’s all keep in touch because we’ve got the same zebra hang in our bodies or we are the zebras.