Anyone on evista?
I have been on Arimidex for 6 years, I now have osteoporosis in my low back. My MO does not want me to take anymore. I have tried Tomoxifen 2x and I can’t handle it. I did take Fareston which was great but I don’t think it’s out there anymore. So now she wants to try Evista to strengthen bones and still protect. I just read that it’s at risk of blood clots and heart attack?!?! Can anyone reassure me that this is safe?
Comments
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I am on Evista (generic) to manage my breast cancer risk. I’ve only been on it for three weeks but so far haven’t noticed any side effects. My diagnosis is Atypical Lobular Hyperplasia. I also have osteoporosis. The handout my physician gave me listed Tamoxifen with a risk of blood clots at 2.1% while Evista's risk was 1.6%. I also take a low dose aspirin daily, so when my physician prescribed Evista and warned me of the blood clot risk, she also noted that I took the low dose aspirin. I am supposed to temporarily stop taking it if I am going to be on a long trip not moving much, or if I get any surgery due to the clot risks. I hope this helps and that you can make a decision with which you feel comfortable.
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SharonRose2017, thanks for answering. I didn’t realize it was less present then tamoxifen? I picked it up bridal and it came with a big pamphlet of warnings regarding Clots and heart attacks. That does make me a bit nervous though.. what if I had to get dental work or emergency surgery? I will def take baby aspirin. Does it also mean that u don’t have to take calcium or D3 anymore?
Glad your feeling well on it so far
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also would anyone know is this safe for dental work? I have to get a crown Monday.
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I'd check with the doctor re the Vitamin D3 and calcium. I continue to take both supplements. Mine didn't say anything about stopping, and most of what I've read says to continue. As far as the dental, I have those issues as well. My understanding is that it's the bisphosphenates that complicate that. I spoke to my DDS about that when MD wanted me on Reclast or Prolia, and he said there are many safety precautions and risk management procedures that they take for dental procedures as long as they are made aware of the medication situation. Also, my DDS said it was extractions and anything where a hole in the jaw is created for which they took proactive measures. Crowns, cleanings, fillings are not the problem according to him. But worth asking your own DDS as every situation is different. Of course, again, please check with your doctor about Evista, etc., as I am only writing from my own experience and moderate amounts of research. I am going to another rheumatologist, another hospital system, for a second opinion on Tuesday and I'd be glad to update you then re the Evista vs. other choices I had (IV Reclast and injection of Prolia). I had to fight those two docs (one breast medical and other rheumatologist) as I am not getting a substance that lasts in the body 6 months or a year in light of all the adverse reactions I've heard about! Good wishes coming your way!
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Exactly, we are very much on the same page. I refuse to take Reclast or Prolia shots, I hear to much regarding effects especially with dental work. So hence why she started me on this now. I have a crown scheduled for Monday, but from what I hear and read, like you said, it doesn’t contains same substance and should not be an issue. But I will mention it to him. Yes please keep me updated! Good luck and many well wishes.. thanks so much
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Crowns should be OK. I ended up editing my latest reply and you wrote in the meantime. All the best to you as well!
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Anyone with osteoporosis, rare exceptions,(e.g., patients with active renal stones) needs to get adequate calcium and vitamin D as part of their OP management, either from diet or from supplements, per all reputable western organizations that have expertise in OP. However, though calcium and D are necessary, they are not sufficient to rx the OP. Think of calcium as a building block for bone, and vitamin D a means to absorb it so it can get to your bone. But you also need more,
The bisphosphonates and prolia (denosumab) are antiresorptives that prevent bone breakdown and all can, very rarely, especially with prolonged use and with extractions or implants (well under 1 per cent of people) cause ONJ, but note even if someone has ONJ in early stages, i.e., it is monitored, all that is done is to smear a cream on the area! If the risk of OP fx is big enough, docs may even continue the treatment, as they balance risk vs. benefit, if there are no good alternatives! The horror stories of ONJ are from people who were not monitored and advanced to higher stages, and of course they make the news, The vast majority of people on OP doses of bisphosphonates and prolia in doses used for OP do not get dental side effects or serious other side effects
Higher doses, used to treat metastatic cancer to bone (e.g., monthly or every three months) increase the risk of ONJ
Here is one overview of OP for lay people extracted from National Osteoporosis Foundation recommendations which talks about calcium, D, and agents available.
https://www.medicinenet.com/osteoporosis/article.htm#what_are_osteoporosis_causes_and_risk_factors
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My dentist outlined the preventative measures he'd take were I to be on Reclast or another bisphosphenate. There would be monitoring via a regular panorex, antibiotic mouthwash, and pill antibiotics. I believe the latter two would be in anticipation of any oral surgery. I would imagine the panorex would just substitute for standard X-rays at check ups. The important part is letting the dentist know. Mine has signs all over his office asking if patients are on or have ever been on bisphosphenates. Hope this helps, B123.
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SharonRose2017 My dental insurance is horrible so I’m afraid to have to go through pano X-rays ea time and if something came up, which just did. I’m afraid I would be at high risk.
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I’ve been on Evista for a little over 3 years to lower risk after a dx of ADH. I’ve had hot flashes and insomnia, but then I had those even before I started this drug, so it’s unclear whether these are side effects. I’ve had quite a bit of dental work while on it- crown, a root canal, 2 extractions and subsequent implants and neither my oral surgeon nor my dentist felt the Evista was problematic.
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momoschki omg thank you for posting this, I feel better knowing that. Have you had any worries about blood clots? Do you take a baby aspirin? Very happy it’s worked well for you!! Blessing
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Yes, I do take a daily baby aspirin. As for blood clots, my PCP did a blood test to see if I am genetically prone to clots- it came up negative, so that put me at ease. Since I’ve been on the Evista, I’ve taken several long flights (8+ hours) and just make sure to get up and move around a bit every hour or so. I haven’t had a problem. If the medical consensus in 2 years, when my five years is complete, is that continuing yetanother 5 years would afford me protection, I wouldn’t hesitate to do so.
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momoschki, I did check with my dentist today and he said justvehat you did, it’s fine and wouldn’t be a problem. If any extraction then it’s a very small chance of problems but they can deal with it. I don’t know if I was 100% convinced about last part but I don’t anticipate any issues. As for flying, that made me nervous so thank you for mentioning g that. Have you had a dexa yet to see if any boneimprovements?
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No, haven’t had a DEXA since being on the Evista- I’m overdue and truthfully have been putting it off. Sometimes I feel like there is only so much medical stuff I can deal with at once. I do have some osteopenia, so it would be an added plus if there was some improvement there
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B123, Had the second opinion this morning. The other rheumatologist thought either Reclast, Prolia, or Forteo were appropriate choices for my situation, so he agreed with the first doctors and added Forteo to the list. However, since it is my body and since I've already had three weeks on Evista, I have decided to see what my next DEXA scan shows. If my bone density is the same or better, then I'll stay with Evista (Raloxifene). If it gets worse, then I will probably go for Reclast. He agreed with the other doctors, and then added Forteo. Didn't think the dental issues were a big consideration at the osteoporosis dosage level, but as Chronicpain said above, ONJ is much more of a consideration at the metastatic cancer treatment dosage.
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Sharon rose, I have never heard of Forteo? I just looked it up and it’s the only FDA approved injection that rebuilds bones? That’s very interesting? I wonder why so many do Prolia then? Well I’m glad you got another opinion and seems like they are all on same page. If you go with the Reclast will you continue with evista? I think good move on the dexa first!
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Just read Forteo is given daily injection..
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I was on Forteo for two years, then two years again. It worked quite well for building bone. The injection was easy to do. You can take the pen with you traveling but it has to be refrigerated and that part was kind of a pain.
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I've been taking Evista for 8 years to prevent breast cancer. Two of my sisters have been on it for longer. None of us has had any problem, no side effects whatsoever. I've had root canals and an implant and never gave it a thought! I dont take baby aspirin. The only issue is that no one seems to know the answer about how long it should be taken.
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Hi, To clarify, the concern with dental issues (osteonecrosis of the jaw=ONJ) is connected with bisphosphenates such as Reclast, Zometa, Fosamax, Boniva, Actonel, Prolia, etc. As far as I know, in my limited layperson's experience, Evista (Raloxifene) is not associated with causing ONJ. It's a SERM (selective estrogen receptor modulator), and works differently than bisphosphenates. I have learned a lot from all here, so thank you for taking the time to post.
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B123, Good question! The second opinion doc implied that I could continue to take Evista with something like Reclast, but I am not going that far out yet. I want to see how this all affects my bone density in the next year or two, keeping in mind my increased risk of breast cancer. Take care!
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Veeder14 and Molly rose, good to hear your tolerating evista well. Any dexa scans to show improvement? No baby aspirin Molly rose?
SharonRose2017.. good idea!!
Momoschki I hear you! Gets to be to much sometimes.. it really shouldn’t be this hard.. ugh
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No scans for me since I am taking it just for breast cancer prevention. No one has suggested taking baby aspirin, but now I am giving it some thought.
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Molly Rose, It can’t hurt to take one each day, just an added protection if anything. I am taking half a pill ea/day of evista just to slowly work myself up to taking a whole. I’m very nervous about having a heartattack or clot.
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veeder was it hard to give yourself injections each day? Why did you stop
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so I have been on evista for a month now, I have been having severe sciatica pain L leg, dizziness, and my heart has been racing. I thought maybe I’m having a heart attack, DVT? I went to doctor and then I stopped the evista, my heart immediately went back to normal and my head feels clearer. So it’s safe to say I really can’t do that again.. very scary feeling! Anyone else
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