Blood Clots - Connected with PMR?

Posted by christopherc @christopherc, Dec 24, 2021

I am a 66 year old male and was diagnosed with PMR about a nine months ago after symptoms arose about a year ago. I was recently diagnosed with bilateral pulmonary embolisms (blood clots in both lungs) which can be life threatening. I had ultrasounds of both my legs and no clots were found and I had no symptoms of blood clots in my legs. Neither my rheumatologist nor my Hematologist thought it was likely that the blood clots had anything to do with my PMR. My gut tells me however, that the blood clots are related to my PMR and I was wondering if anybody in this support group had any similar experience that might shed light on how I ended up with blood clots in my lungs.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) group.

Hello @christopherc, Welcome to Connect. I also have PMR but it is currently in remission. I was also diagnosed with lymphedema and was the doctor checked my legs for clots at the time of the lymphedema diagnosis but didn't find any symptoms. This was shortly after my second occurrence of PMR went into remission. While we wait for other members in PMR group to share their experience with pulmonary embolisms, you might find the following article helpful.

Polymyalgia Rheumatica (PMR) and Lung Involvement: The Forgotten Association:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7060987/

Did your rheumatologist or hematologist offer any possible causes of the pulmonary embolisms?

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John, I’m not sure if you got my reply yesterday. I may not have sent a correctly. So I will repeat it. Thank you for the reply and the article. I am waiting for the results of bloodwork from my Hematologist and will discuss blood clots with my rheumatologist in more detail when I see her the middle of next month. So so far neither knows of any reason for the blood clots or how they got to my lungs. I hope you have a comfortable and happy holiday season.

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@christopherc

John, I’m not sure if you got my reply yesterday. I may not have sent a correctly. So I will repeat it. Thank you for the reply and the article. I am waiting for the results of bloodwork from my Hematologist and will discuss blood clots with my rheumatologist in more detail when I see her the middle of next month. So so far neither knows of any reason for the blood clots or how they got to my lungs. I hope you have a comfortable and happy holiday season.

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Hello Christopher @christopherc, Thank you for the follow up. I'm hoping you get some answers when you meet with your rheumatologist next month. Hope you also have a happy and hopefully pain free holiday season. Can you share an update after your appointment?

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@johnbishop

Hello Christopher @christopherc, Thank you for the follow up. I'm hoping you get some answers when you meet with your rheumatologist next month. Hope you also have a happy and hopefully pain free holiday season. Can you share an update after your appointment?

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Yes, John. Will do.

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I ended up with massage blood clots in my lungs also. Whether related to PMR Is still uncertain. My hematologist said that the prednisone is the likely cause. I am still following up with my doctors It’s a very scary predicament we are in, isn’t it? Being that close to death is a wake-up call. I did show clots in my left leg so am now on blood thinners too.

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@carol75

I ended up with massage blood clots in my lungs also. Whether related to PMR Is still uncertain. My hematologist said that the prednisone is the likely cause. I am still following up with my doctors It’s a very scary predicament we are in, isn’t it? Being that close to death is a wake-up call. I did show clots in my left leg so am now on blood thinners too.

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Thanks Carol for the reply and interesting information. Please clarify what you mean by massage clots. I use a power massage gun to massage most muscles in my body including my calf’s. I purchased the massage gun, I believe, in February which was about a month and a half before I was diagnosed with PMR and it has helped with muscle soreness and stiffness. I did read that massage therapy is not good if you have clots in your legs because it could cause them to break up and travel to your heart, lungs or brain. When I asked my Hematologist about using the massage gun she basically said if you’re going to continue to use it use it lightly and be gentle. When I asked her how I could’ve gotten clots in my lungs and have none in my legs she said it’s quite possible that whatever clots broke up and traveled to my lungs have already cleared my legs and that’s why they didn’t show up in the ultrasound of my legs. She and my rheumatologist, by the way also said they didn’t think prednisone was the culprit. I have not found any medical literature indicating that blood clots are a side effect of prednisone or that there have been documented cases of people with PMR taking prednisone have had blood clots. I did however find several studies that indicated that people with PMR and/or GCA have a significantly higher rate of “vascular events “. Please let me know if you’ve had any advice about massage therapy or massage guns as well if you know if the clots in your legs were broken up by massage causing them to travel possibly before they could dissolve. Thanks for your help.

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@christopherc

Thanks Carol for the reply and interesting information. Please clarify what you mean by massage clots. I use a power massage gun to massage most muscles in my body including my calf’s. I purchased the massage gun, I believe, in February which was about a month and a half before I was diagnosed with PMR and it has helped with muscle soreness and stiffness. I did read that massage therapy is not good if you have clots in your legs because it could cause them to break up and travel to your heart, lungs or brain. When I asked my Hematologist about using the massage gun she basically said if you’re going to continue to use it use it lightly and be gentle. When I asked her how I could’ve gotten clots in my lungs and have none in my legs she said it’s quite possible that whatever clots broke up and traveled to my lungs have already cleared my legs and that’s why they didn’t show up in the ultrasound of my legs. She and my rheumatologist, by the way also said they didn’t think prednisone was the culprit. I have not found any medical literature indicating that blood clots are a side effect of prednisone or that there have been documented cases of people with PMR taking prednisone have had blood clots. I did however find several studies that indicated that people with PMR and/or GCA have a significantly higher rate of “vascular events “. Please let me know if you’ve had any advice about massage therapy or massage guns as well if you know if the clots in your legs were broken up by massage causing them to travel possibly before they could dissolve. Thanks for your help.

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Carol, yes it is a wake up call to find out you have bilateral PE. Based on your comment that your hematologist said prednisone can elevate the risk of blood clots I did another search of the web and this time found that there are observational studies that indicate that is true. So I plan to talk to my hematologist about it and ask her to look into it. I have also had some pretty bad bouts of low blood glucose levels which may be caused by prednisone. Have you or other people with PMR had this problem? Thanks.

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I’m still in limbo concerning the blood clots. I go see the hematologist the beginning of January. The amount of clots that they took out of my lungs would have filled a baseball. I was very fortunate to be in a hospital that had the right procedure and right doctors. I will keep you updated after my next doctors appointment. I am glad we are in this discussion.

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Thanks, Carol. I’m glad you received good care. I hope your clots dissolve quickly so you can have peace of mind. I will update my post too if I get any interesting information from any of my doctors. Thanks for sharing.

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@johnbishop, @christopherc
Just checking in to say that I have GCA and have had 2 strokes, an eschemic heart attack, DVE, TIA's, Diabetes 2 due to massive I.V. Prednisone at first bc GCA caused blindness in right eye and had to protect vision in other eye), a blood clot in left leg, and, and…lol
I feel certain all of this is a result of GCA. (I refuse to identify it as "my" GCA). What a wreck, huh? lol
But don't be scared – I'm 86. It all began at age 83.

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@artist01

@johnbishop, @christopherc
Just checking in to say that I have GCA and have had 2 strokes, an eschemic heart attack, DVE, TIA's, Diabetes 2 due to massive I.V. Prednisone at first bc GCA caused blindness in right eye and had to protect vision in other eye), a blood clot in left leg, and, and…lol
I feel certain all of this is a result of GCA. (I refuse to identify it as "my" GCA). What a wreck, huh? lol
But don't be scared – I'm 86. It all began at age 83.

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We’ll John you have shockingly been through an awful lot. I’m so sorry you’ve had to endure so much. It’s wonderful that you have the spirit and mindset to try to help others. Thank you and may God bless you with the comfort you deserve.

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@artist01

@johnbishop, @christopherc
Just checking in to say that I have GCA and have had 2 strokes, an eschemic heart attack, DVE, TIA's, Diabetes 2 due to massive I.V. Prednisone at first bc GCA caused blindness in right eye and had to protect vision in other eye), a blood clot in left leg, and, and…lol
I feel certain all of this is a result of GCA. (I refuse to identify it as "my" GCA). What a wreck, huh? lol
But don't be scared – I'm 86. It all began at age 83.

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You're going through so much. Wish you well.

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