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) Support Group.

@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

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

REPLY
@milld835

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

Jump to this post

@milld835 Thankyou very much for your kind words. Laurie

REPLY

I gave blood with PMR and no Prednisone last March-no problem. Last week , I tried to give blood again, this time I have been on Prednisone for 8 months and my blood was clotting. It could be the Prednisone

REPLY

As promised, this is an update to my post above about discovering blood clots in both my lungs back on December 6, 2021. I’ve been on blood thinners for about two months and recently had another CT scan above my lungs and fortunately there was no sign of blood clots. Apparently the medication worked and they dissolved. I also got the results of blood work done by my hematologist who showed everything was normal. She therefore attributes the blood clots in my lungs to a long car ride I took 20 end of November even though I was careful to stand and walk every couple of hours on the trip. I asked her again whether she thought the blood clots had anything to do with my PMR and she said she didn’t think so. My first post was an error it should’ve said she thought it was unlikely that the blood clots while related to PMR. So that’s good news. All the best to you in your recovery.

REPLY

Why do so many here go to a Hematologist? I'm kind of new to this (PMR started less than 2 months ago). I just started seeing my Rheumatologist. Should I find a Hematologist too? I do have strange new leg cramps and numbness in my left foot that I was going to mention to Rheumatologist next week and I was wondering if this was due to inflamed arteries pinching nerves. So many things going on to track and not sure if it's Prednisone side effects or the PMR affecting other parts of the body.

REPLY
@christopherc

As promised, this is an update to my post above about discovering blood clots in both my lungs back on December 6, 2021. I’ve been on blood thinners for about two months and recently had another CT scan above my lungs and fortunately there was no sign of blood clots. Apparently the medication worked and they dissolved. I also got the results of blood work done by my hematologist who showed everything was normal. She therefore attributes the blood clots in my lungs to a long car ride I took 20 end of November even though I was careful to stand and walk every couple of hours on the trip. I asked her again whether she thought the blood clots had anything to do with my PMR and she said she didn’t think so. My first post was an error it should’ve said she thought it was unlikely that the blood clots while related to PMR. So that’s good news. All the best to you in your recovery.

Jump to this post

I'm so glad you're feeling better. Maybe not PMR, but vaccine related? Just a thought.

REPLY
@abbeyc

Why do so many here go to a Hematologist? I'm kind of new to this (PMR started less than 2 months ago). I just started seeing my Rheumatologist. Should I find a Hematologist too? I do have strange new leg cramps and numbness in my left foot that I was going to mention to Rheumatologist next week and I was wondering if this was due to inflamed arteries pinching nerves. So many things going on to track and not sure if it's Prednisone side effects or the PMR affecting other parts of the body.

Jump to this post

I am new to PMR as well. Only one month diagnosed, but previous 5 months were PMR undiagnosed and extruciating. Prednisone is great, but some of the side effects can be, at times concerning. Talking to your Rheumatologist is your best bet. Keep moving as much as possible. It's a day to day thing for me, one day it's one thing and the next something different. The Prednisone has arrested the pain almost 100%. The side effects are the trade-off for a way more productive life...so we shall see. Wanting to return to work, but waiting to hear from my Neurologist for the go-ahead. All the best to you ~ Deb.

REPLY
@milld835

I am new to PMR as well. Only one month diagnosed, but previous 5 months were PMR undiagnosed and extruciating. Prednisone is great, but some of the side effects can be, at times concerning. Talking to your Rheumatologist is your best bet. Keep moving as much as possible. It's a day to day thing for me, one day it's one thing and the next something different. The Prednisone has arrested the pain almost 100%. The side effects are the trade-off for a way more productive life...so we shall see. Wanting to return to work, but waiting to hear from my Neurologist for the go-ahead. All the best to you ~ Deb.

Jump to this post

Thank you. Yes I have my list of questions for my Rheumatologist and this is one of them (if I should see a Neurologist or are my strange nerve symptoms a side effect of PMR or Prednisone). I agree. Each day is something different. Isn't it remarkable?! That is so great that you are nearly 100% pain free. That is my goal but it comes with a medication side effect trade-off, like you said. But I want my life back. I 'was' a very 'young', physically active 59 year old and I feel 20 years older. Best to you as well!

REPLY
@abbeyc

Thank you. Yes I have my list of questions for my Rheumatologist and this is one of them (if I should see a Neurologist or are my strange nerve symptoms a side effect of PMR or Prednisone). I agree. Each day is something different. Isn't it remarkable?! That is so great that you are nearly 100% pain free. That is my goal but it comes with a medication side effect trade-off, like you said. But I want my life back. I 'was' a very 'young', physically active 59 year old and I feel 20 years older. Best to you as well!

Jump to this post

I'm a young 71.9. LOL. Felt like 80 for 5 months and had no idea what was wrong. I'm only seeing a Neurologist because my family doctor dropped the ball on this and when I insisted on blood work because I figured after all this time it might be rheumatoid arthritis. My CPR level was dangerously high and I insisted he refer me somewhere because he was retiring in a couple of weeks and I was scared. He had become very lax in his diagnoses of many things over the last couple of years. So that's how I ended up in Neurology. The earliest in Canada I can get into a Rhematology Clinic is end of May and that's on an "urgent" basis. As of today, life is way better than 5 weeks ago. One day at a time...

REPLY
Please sign in or register to post a reply.