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GCA on prednisone & Actemra. DVT blood clot.

Posted by momac59 @momac59, Sep 17 2:09pm

Hi all.
I was diagnosed with GCA last April on top of Lupus, Hashimotos, diabetes. I started at 60 mg. Prednisone after being discharged from 2 week stay at Mayo. I’ve been tapering and got to 7mg but symptoms have come back so now back up to 10mg/day. I also take a shot of Actemra weekly. So yesterday my Rheumatologist was concerned about my leg pain; left calf. He sent me for ultrasound and sure enough, I have a DVT clot. I am now on Eliquis & a little overwhelmed. I feel like I’m just getting used to the whole GCA autoimmune firestorm from 5 months ago & now this. I’m on so many medications already & now we gotta add Eliquis.
I researched possible causes of blood clots & found out that patients newly diagnosed with GCA can develop blood clots. Not sure if it’s the disease itself or the high doses of prednisone to treat. I have other factors to consider as well; I am diabetic, 67, & when I was in Mayo in April, I was very sick & couldn’t get out of bed too much the first week. So lack of movement.
Has anyone else experienced this? I’m just hoping this isa one and done with this clot. Thanks in advance for taking the time to read & respond. I’m feeling anxious & this support means a lot!

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gailcha | @gailcha | Sep 20 4:33pm

Mine was the other way around. I was diagnosed with 2 DVTs and bilateral pulmonary embolisms in January and started on Eliquis - no previous problems. Then in March I started with GCA symptoms and put on prednisone and Actrema; still trying to get stabilized on meds. Even though it’s been 6 months, my PCP is keeping me on Eliquis. Not a fun year. 😬

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artist01 | @artist01 | Sep 21 10:27pm

Hi momac59:
Fear not. I think Eliquis is a good med to be on with the problems you have. I’ve been on it for several years, following 2 strokes, 2 heart attacks and a DVT. I truly consider Eliquis to be a lifesaver!
I was diagnosed with GCA in 2019, after blindness happened in my right eye. I was on a high dose of Prednisone for the first year, followed by weekly Actemra injections for about four years.
I very much empathize with the load of medication you’re currently on, but I hope that might improve with time. I had diabetes during my GCA period too, but with watching my diet, plus exercise (just a daily half-hour walk), I beat that.
I’m now hale and hearty at the age of 91, with no sign of either GCA or diabetes, and though I’m currently dealing with “invasive squamous cell carcinoma” - skin cancer, left hand, I fully intend to beat that too. My mantra has always been that I wanna live to be 97, and then re-negotiate!

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momac59 | @momac59 | Sep 22 9:14am
In reply to @artist01 "Hi momac59: Fear not. I think Eliquis is a good med to be on with the..." + (show)
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Hi momac59:
Fear not. I think Eliquis is a good med to be on with the problems you have. I’ve been on it for several years, following 2 strokes, 2 heart attacks and a DVT. I truly consider Eliquis to be a lifesaver!
I was diagnosed with GCA in 2019, after blindness happened in my right eye. I was on a high dose of Prednisone for the first year, followed by weekly Actemra injections for about four years.
I very much empathize with the load of medication you’re currently on, but I hope that might improve with time. I had diabetes during my GCA period too, but with watching my diet, plus exercise (just a daily half-hour walk), I beat that.
I’m now hale and hearty at the age of 91, with no sign of either GCA or diabetes, and though I’m currently dealing with “invasive squamous cell carcinoma” - skin cancer, left hand, I fully intend to beat that too. My mantra has always been that I wanna live to be 97, and then re-negotiate!

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@artist01
Thank you so much for your encouraging words . Reading them made me feel so much better; more hopeful. Lupus & diabetes have been no picnic for the past 30 years but this GCA for me has been so much harder & scarier. I will keep taking my meds & trust my good doctors at Mayo & think of you when I get anxious!
I noticed on your profile that you are an artist, & love to do animals. Me too! Losing some eyesight had to be devastating. That was one of the most difficult things for me. I lost a bit in my left eye but some days it’s not so bad & I can do my art. Thank goodness because that is my calming, meditative therapy when things get overwhelming. I’ve always loved animals & have been drawing them since childhood. I’m not a professional like you but have done some commissions & am teaching a class this January at our retirement community.
So despite these darned autoimmune diseases, I am going to keep trying to find the joy in my life & to share it when possible.
Thanks for your positivity!

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artist01 | @artist01 | Sep 22 11:52am
In reply to @momac59 "@artist01 Thank you so much for your encouraging words . Reading them made me feel so..." + (show)
Profile picture for momac59 @momac59

@artist01
Thank you so much for your encouraging words . Reading them made me feel so much better; more hopeful. Lupus & diabetes have been no picnic for the past 30 years but this GCA for me has been so much harder & scarier. I will keep taking my meds & trust my good doctors at Mayo & think of you when I get anxious!
I noticed on your profile that you are an artist, & love to do animals. Me too! Losing some eyesight had to be devastating. That was one of the most difficult things for me. I lost a bit in my left eye but some days it’s not so bad & I can do my art. Thank goodness because that is my calming, meditative therapy when things get overwhelming. I’ve always loved animals & have been drawing them since childhood. I’m not a professional like you but have done some commissions & am teaching a class this January at our retirement community.
So despite these darned autoimmune diseases, I am going to keep trying to find the joy in my life & to share it when possible.
Thanks for your positivity!

Jump to this post

@momac59
Hello Artiste!
I’m so happy my words have helped you to feel a little better about all that you’re presently dealing with! I encourage you to stick with Mayo Connect too, because they were such a positive force for me during my bad years.
And certainly keep up with your art and your teaching! Good for you!!! I sure do miss my teaching days and my art students.
I still work with my art but on a much more minor scale now, since working with my former 5’ x 8’ canvases is no longer possible.
Keep that positive attitude goin’ too, gurl!

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