1. < Osteoporosis & Bone Health

Has any gotten blood clots on Evista (Raloxifene)?

Posted by cmdw2600 @cmdw2600, Oct 8, 2023

I am four years out from completion of treatment for triple negative breast cancer. I was diagnosed with osteoporosis after treatment and Prolia was recommended. I did not do much research at that time because after chemo I thought “what’s one more injection?”. I suffered significant hair loss (after finally regrowing my hair) and chose to discontinue. Since I also have GI issues, most oral osteoporosis drugs are not recommended. My endocrinologist suggested Evista, a medication that can help ward off breast cancer as well as treat osteoporosis, which I agreed to even though it is not effective in preventing my type of BC. She and I discussed the warning that blood clots are a possibility but she was not concerned as I am not predisposed to that issue so I started taking this once a day pill in April.

I now have had some targeted pains that are concerning-one in my inner left thigh, but the scarier one is in my head. I never get headaches and this is in a very specific small spot. The thought of a possible stroke is frightening. Just wondering who on this forum takes Raloxifene and if they’ve had any issues.

Thank you,
Cindy

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broken13 | @broken13 | Feb 6 3:47pm

Hi Cindy. I took Raloxifene for 5 years after two years of Forteo, with no problems at all. Now that I had to quit it to restart Forteo, I notice brain fog and dry skin. I have read that Raloxifene actually improves those symptoms, so that is a plus of the medication. I am hoping to go back on it after this course of Forteo.

REPLY
2 replies
daisylou | @daisylou | Feb 7 11:41am
In reply to @broken13 "Hi Cindy. I took Raloxifene for 5 years after two years of Forteo, with no problems..." + (show)
@broken13

Hi Cindy. I took Raloxifene for 5 years after two years of Forteo, with no problems at all. Now that I had to quit it to restart Forteo, I notice brain fog and dry skin. I have read that Raloxifene actually improves those symptoms, so that is a plus of the medication. I am hoping to go back on it after this course of Forteo.

Jump to this post

Why did you have to quit to restart Forteo?

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1 reply
broken13 | @broken13 | Feb 7 2:14pm
In reply to @daisylou "Why did you have to quit to restart Forteo?" + (show)
@daisylou

Why did you have to quit to restart Forteo?

Jump to this post

Apparently over the five years, "the insignificant changes added up to a significant change" and another bone builder was recommended. I don't have a lot to work with, so for me to loose even a couple of degrees, I do need to stay on top of it.

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didamco | @didamco | Apr 14 7:33pm
In reply to @broken13 "Hi Cindy. I took Raloxifene for 5 years after two years of Forteo, with no problems..." + (show)
@broken13

Hi Cindy. I took Raloxifene for 5 years after two years of Forteo, with no problems at all. Now that I had to quit it to restart Forteo, I notice brain fog and dry skin. I have read that Raloxifene actually improves those symptoms, so that is a plus of the medication. I am hoping to go back on it after this course of Forteo.

Jump to this post

I am 70 years old and have over last 15 years been on Fossamax , actonel and now Evista., with breaks in between
I also have osteoarthritis - in spine hands ankle and knees so have to keep moving
I have been on half dose Evista Since Jan 2025 following coming off Actonel in November 2024 after 3 years on 1/3 normal dose
Next bloods in June and will report back - CTX levels will be interesting .
Had good results on Actonel in Spine but not much difference in hips
My DExa in Dec 2024
Spine -2.3
Left femur neck -2.2
Right femur neck -3.0
TBS 1.37
I am on Onero program and have my own physiologist for weight training as well as walking up and down hills every day & running on a treadmill 3 days per week. Also have private pilates with physio each week to make sure I work all internal core muscles to help with Stabilising spine and hips etc.
Would be keen to hear others resusls on Evista
I am not keen to try Evenity or Prolia and my endo does not want me to go back to Fosamax or Actonel .

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broken13 | @broken13 | Apr 15 3:11pm

You certainly are very proactive in treating your whole body and keeping limber and moving is a huge plus. I just met with a naturopathic doctor who really opened my eyes to a few more things I could be doing. She recomended an app that is free to down load, but keeps food diary tracking of nutrition scores.
Cronometer. https://cronometer.com/
Have you ever fractured a bone? That was what had me do two years of Forteo. The maintenance Raloxifine was 60 mg a day.

REPLY
1 reply
didamco | @didamco | Apr 15 7:33pm
In reply to @broken13 "You certainly are very proactive in treating your whole body and keeping limber and moving is..." + (show)
@broken13

You certainly are very proactive in treating your whole body and keeping limber and moving is a huge plus. I just met with a naturopathic doctor who really opened my eyes to a few more things I could be doing. She recomended an app that is free to down load, but keeps food diary tracking of nutrition scores.
Cronometer. https://cronometer.com/
Have you ever fractured a bone? That was what had me do two years of Forteo. The maintenance Raloxifine was 60 mg a day.

Jump to this post

I am effectively taking 30mg raloxifene per day ( cutting pills in half).
I suspect will go to full dose in June when I see endo.
I have not had a fracture for 20 years- slipped on paving near pool and fractured knee cap. ( was 49 years old)
However in a Feb 2025 spine x ray report stated:
Findings:
Lumbar vertebrae are normal in height with normal alignment.
Thoracic alignment is normal but there is biconcave mid vertebral height loss at T6 and T9 and with the T9
estimated at 25% and may indeed be indicator of osteoporotic insufficiency fracture.
Thanks for the info re nutrition app - will set it up

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