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Blood Clots - Connected with PMR?
Polymyalgia Rheumatica (PMR) | Last Active: Jul 7 9:33am | Replies (37)Comment receiving replies
I realize I'm reading this years after you posted it, so I have to ask: how are you doing now? Is the PMR better? Any more clots in the lungs or elsewhere?
I've had symptoms of PMR for 9 months, was diagnosed and started on prednisolone about 2 1/2 months ago. I was great for about 2 weeks; pain was gone, I could move again. But I began to get short of breath. At first, I didn't think much of it. I have COPD (though not very bad) and I have gained weight, so I attributed it to that. Then I started getting chest and back pain with the shortness of breath. No tests came back positive initially but when I went to actually see my PCP, she could see I was struggling to breathe, so ordered a D-dimer. To my amazement, it was positive. My PCP insisted I go to the ER, where they did a CT and found pulmonary emboli in all parts of my lungs except the left upper lobe.
My pulmonologist has assumed this aspect of my care. He says prednisone can cause blood clots, but it's rare and unlikely. (My rheumatologist said he'd never heard of prednisone causing PE's.) So it's what they call "an unprovoked case" of PE's. I may end up on my blood thinner (apixaban) for the rest of my life. Don't fall, they told me, and no NSAIDS.
The only confounder I can think of is I have no spleen. I DID fall 2 years ago, ruptured it and had to have an emergency splenectomy. Afterward, I ended up with thrombocytosis--lots of platelets, which I guess is common in people without spleens. My platelet count did get back to high normal this year, so it's a long shot, saying it caused the pulmonary emboli.
So to anyone with PMR who is just browsing through these threads, if you get short of breath, don't ignore it, get to your doc or the ER right away. It could be a matter of life or death.
Replies to "I realize I'm reading this years after you posted it, so I have to ask: how..."
Nothing much to add except that I had an identical event. Extensive, bilateral, multiple, and massive was how my pulmonary embolism was described. And yes ... "unprovoked" as well. It happened about 10 years ago during my early days of PMR and prednisone.
Within 2-3 years after starting prednisone for PMR a string of things happened. First it was "exercise intolerance" followed by shortness of breath with minimal exertion. I considered myself an aging athlete but this was all foreign to me. I was doing a 30 mile bicycle ride when I hit the proverbial wall. I noticed an irregular pulse so I reported this to my PCP. An EKG revealed frequent PVC's and left ventricular hypertrophy (LVH).
All of this "suggested" high blood pressure except I didn't have high blood pressure. My PCP said I should check my blood pressure more often. After a couple of days, I caught a high blood pressure. I thought my blood pressure machine had malfunctioned because it just read "HIGH." Fortunately, I worked at a hospital so checking my BP at work was not any problem.
The hospital machine recorded a 210/110 reading so I was taken to the ER. I was monitored in the ER while my BP drifted back to normal without any intervention. A doctor wanted to know why I was checking my BP so often. She suggested the spike in BP was anxiety related from checking my blood pressure too much. The recommendation was to not check my blood pressure as often as I was doing.
My PCP knew better and referred me to a cardiologist who initiated three blood pressure medications. Things seemed well except that my shortness of breath worsened over time. I considered my shortness of breath as normal because I was getting out of shape. I tried to work out more to get back into shape. I felt great on prednisone and PMR pain was controlled.
All the above happened maybe a year before the pulmonary embolism. The "acute pulmonary embolism" was bizarre. I felt slightly more short of breath than usual so I wandered into an urgent care center thinking I should have another EKG done. I was fine while sitting in the waiting room but I got noticeably short of breath walking into the exam room. The first thing checked was my oxygen saturation. Suddenly people were going crazy and a doctor rushed into the exam room. She asked me how I felt and if I was having any chest pain. I said I was a little short of breath but that wasn't unusual. The doctor informed me that an ambulance had been called to take me to the emergency room. I resisted and said if I wanted to go to the "emergency room" I wouldn't be in the "urgent care center."
I was taken to the emergency room against my will where things got more bizarre. A chest CT was done and I was asked if I could walk back to my room. I didn't see any reason why I couldn't so that was what I did. I was hooked up to telemetry. In the background I heard some alarms and people rushed past me but they circled back and surrounded me. They suggested that I should sit down in the wheelchair they had available.
When I got back to my room, I was seen quickly. A doctor said my d-dimer was high and he asked me if I knew what that meant. I was a nurse so I said it usually meant starting heparin. I doctor said that was the plan so I would need to stay at the hospital. I thought it wasn't necessary so I bargained with the doctor because something was in the oven at home that needed my attention. The doctor said my chest CT showed a pulmonary embolism. He said there was a bed waiting for me in the intensive care unit.
The extent of the bilateral, multiple, and extensive pulmonary embolism wasn't revealed to me until I was in the intensive care unit. I recall many doctors milling around outside my room discussing what happened to me before coming into my room. I couldn't hear everything but I heard the word "prednisone" many times.
https://evidence.nihr.ac.uk/alert/low-doses-steroids-increase-cardiovascular-risks-in-inflammatory-diseases/
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Just to update: The above happened 10 years ago. I recovered from the pulmonary embolism. The PE was treated with "warfarin for life." I was able to discontinue prednisone three years ago. I didn't have any additional cardiovascular events while I was on warfarin.
My shortness of breath resolved after I got off prednisone. PMR is probably in remission but I'm still being treated with a biologic called Actemra which allowed me to taper off prednisone. All my blood pressure medications were stopped one by one during the last three years. My blood pressure is normal again. So is my cholesterol level and blood sugar. I still need to lose weight and get back into shape.
Warfarin was stopped last month.
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I’m sorry to hear about your PMR and your bilateral pulmonary embolism. My PMR is still somewhat active but has alleviated significantly. I was on prednisone from a year from the date. I was diagnosed then went off for a year and went back on it for six months due to Accumulating inflammation and stiffness. I’ve been offered now for about eight months. I have not had any further blood clots that I’m aware of. On the advice of my Hematologist, I am still on a half dose of Xarelto blood thinner, which is 10 mg a day. I have not had much in the way of bleeding events, but I Do you notice any kind of abrasion or cut on my skin looks much worse and take longer to heal. I never really found out the source of my blood clots in my lungs but I’m thankful they don’t seem to have recurred. Best of luck to you and I hope you feel better soon.