For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Irish - I just changed from generic to name brand Femara and my co-pay was $0. Prescription Emla cream costs me $8 for a tube and Restasis is about $50 for a three month supply. I'm not sure how they come up the co-pay prices, but glad that I don't have to pay extra for name brand vs. generic Femara. I asked my pharmacist how much it would be if I paid the whole thing out of pocket and he said $900 for a three month supply - yikes!
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Sloan, that was one of the best posts I have seen on this subject!
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Irish...My dose is 1 mg...I think that is standard. I take brand name. My cost is $20.00 a month, generic would be free. For me well worth the price.
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I've been taking Anastrozole for a little over a year now and the SE started out very slowly. I was taken off Anastrozole for two weeks before my last mastectomy in late October, 2015 and resumed it and that's about the time I really started feeling the SE kick in.
I taught Spinning classes/weight training 6 - 8 times weekly for 14 years, and had my own Personal Training business and to this day (although I retired from teaching classes and closed my business two years ago) ride my road bike 100+ miles weekly, weight train at least 3-4 times a week, incorporate flexibility training and HIIT. I have a Great Pyrenees that I walk twice daily and yet still have the neuropathy type pains radiating from my hips to my ankles, lower back pain, shoulder pain and extreme hand issues.
The odd thing is that I suffered trigger thumb before my diagnosis and had injections, and carpal tunnel also. I also had some left leg pain due to overuse and leg-length discrepancy, so I'm thinking that the drug has just exacerbated my prior issues.
Although I continue to workout, I sometimes have to cut my sessions short due to the leg pains (and believe me, I know the difference between simple muscle recovery pain and what I have now). The only two workouts that really don't bother me and that I totally enjoy is the walking and road-biking.
I gained about 9 pounds altogether since starting this drug and since my MO also put me on effexor for the hot flashes, I recently had to go on BP medicine (side effect from the effexor). My whole image of myself is in the toilet right now. The weight gain is all in my abdominal area and my lower back and I've never had that issue.
I chose no reconstruction so the belly and back-fat are so much more noticable. I'm going to talk to my pharmacist to get another brand of Anastrozole and hope that makes a difference.
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thanks for the responses! I poked around on my plan's website and it appears they do cover the name brand drugs. Cost is 0 bc I met my out of pocket for this year, otherwise it will be $15 for 3 month supply. I'm going to ask MO to prescribe the name brand.
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I've only been on anastrozole for a month. The only SE I have been noticing is foot, ankle and leg swelling that has been getting progressively worse. I stopped the drug for the holiday weekend as I was going to NYC to visit the son and would be doing a lot of walking. Swelling improved greatly. As soon as I started up the anastrozole again, the swelling started to progress again. I called the MO's office today and she is seeing me tomorrow. If the swelling is the worst SE I will see with this, I'm hoping a diuretic will fix the problem. All of the anti-hormonals seem to have swelling listed as potential SE so I'm not real hopeful.
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Froggie - make sure you try a different manufacturer of the anastrozole, too. I had side effects --dizziness-- from one company's product, and someone told me to try Teva brand. Viola! The very next day and since then, no side effects. I asked the pharmacist at CVS to order me the medicine from a different manufacturer. One CVS store said, "Oh, we can NOT do that!" The next CVS store said, "Sure!" Guess who got my prescription for the next 10 years?! I thought I had another SE, a rash on my leg, but my doc said it wasn't from the medicine. So, ask your MO and ask your pharmacist!
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Thanks Sloan. My local mom & pop pharmacy has been special ordering in specific generics for me for years. When I went to get the anastrozole filled, Teva was on backorder. I called around to all the other pharmacies and it was back ordered there too - several said there is high demand for Teva brand. I ended up with Accord and have been surprised with how well it has gone until the swelling started. A reaction to one of the fillers crossed my mind and I will mention that to the MO. I only have 4 pills left and will be asking the pharmacy if Teva is currently available assuming she doesn't switch meds on me.
Two of my other generics that were specially ordered for me were by Teva. Unfortunately, they developed manufacturing problems and rather than fix the problem, they punted on those two generics as they were not big money makers. I am hoping the current glitch with the Teva backorder is due to not being able to keep up with demand.
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Froggie, I just got my Teva-made anastrozole about June 10th from my local Walgreens in Michigan. They had to get from the warehouse or wherever but I've not had any problems getting it over the past 1-1/2 years. I hope you can get it with no problems. They do seem to make good drugs with fillers that cause few problems for most of us.
HUGS!
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I was on Accord brand and having joint/muscle pain and a few other side effects. I asked my pharmacy about getting Teva brand but for some reason that I never understood, they couldn't order from Teva. They offered to order from another manufacturer and let me try it. I have used Anastrozole from Major Pharmaceuticals for the past 2 months and have not had any side effects. I wanted to share this as another option.
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froggy, I also have swelling in one calf and ankl on Femara. I had a segmental pressure test which showed some loss of blood pressure in my left leg and may be due to blood clots. I just read through the SEs for this drug and that is one of the "less common" ones that they recommend get checked out as soon as possible. I would be interested in hearing what your doctor says about this. I meet with my PCP next week to find out what his treatment plan will be.
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Thanks Peggy, fearless and grandma for the input.
The Teva was backordered at all my area pharmacies back in mid May when I filled the script and I tried all the area pharmacies since many of them do not use the same wholesaler. I accepted the Accord when no one could get the Teva. I was actually with the pharmacists when they checked their supplier online and also made phone calls so I don't feel like I was being handed line about the backorder status.
I decided on my own to give my self a week after finishing rads before I started the drug. Nine days out from rads my skin broke down under the breast and the RO had me stop the drug after one pill because they didn't want me sweating until the skin was healed in that area. As it turns out, I did no sweating on the drug and I have the mildest of hot flashes at night when I first get into bed and sticking my feet out from under the covers seems to fix that.
The nurse told me not to take a pill yesterday so I didn't. This morning my calfs are down almost a half of inch in diameter and my ankles are almost back to normal with just a little puffiness. My hubby will be coming to the appointment with me and serve as my eye-witness as to how swollen I have been. I know from a previous conversation with the MO that she usually has her patients stop the drug for two weeks and then resume to see if the SE comes back and if it does she moves on to the next drug. I am hoping she does the same with me so I can try a different brand. If I can't get the Teva locally here in PA, then I will be asking her for a written script that I can send to Canada for the brand name. I can afford the $69 for the drug in Canada but not the $567 locally. I'm not old enough for medicare so I don't qualify for the low price coupons that Astra-Zenca gives for the brand name here in the states.
Let me also say that the half life for the active ingredient is about 96 hr. Missing one dose should not alter the blood concentration that much, IMO, to see such a drastic reduction in swelling. On the other hand, the fillers should clear relatively quickly so there is something weird going on here and I suspect the fillers. I will run that by her as well and see what she thinks.
PS: Peggy I was so happy to read that your memorial for your DH went well. Glad you made it safely to WA and are starting to unpack. I normally read the boards late at night and fall asleep in the chair before I have a chance to post - I am hoping to change that bad habit.
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grandma, I hope your MO followed up to determine definitively one way or the other if you had a blood clot. Since both ankles and legs swelled about the same and I experienced no shortness of breath or any other symptoms while on the treadmill, I feel fairly confident that this is peripheral edema but I'm certain that possibility is one of their concerns and why they are having me come in so quickly. My MO is 1.5 hr away and if I thought there was a clot, I would have called my PCP or gone straight to the emergency dept. to have it checked out.
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Froggie, thanks for the nice words! I believe that you can get Arimidex directly from Astra-Zeneca for $20/month even if you are not on Medicare. Several ladies here are younger and have gotten it so it is worth a shot if you want to stay on Arimidex rather than switching to another AI. Glad your symptoms are reduced. Good luck with your MO!
HUGS!
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Just poking my head in to pass on some info from my MO. At my appointment yesterday, she said - if you can get through the first six months on AIs, generally that's the worst of it, and the SEs will start to lessen. This seems to be true for me, having recently switched to Femara. I think the SEs are not as bad as they initially were - I wish they had told me this at the outset!
She also added oral Fosamax. I'd be interested to know how you all are tolerating that one - if you take it!!
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I wish that had been the case for me. I was on anastrozole for over 6 months and I just got worse.
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My symptoms on Anastrozole gradually got worse. That's why I switched to Exemestane after 3 years.
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Just got home from the MO which is an hour and 45 min away. She definitely thinks it is the anastrozole that is responsible for the swelling. She wanted to go directly to exemestane since as it is a drastically different chemical structure. It is not on my formulary. I have hads welling with 2 NSAIDS but not 3 others. Since the letrazole has an extra ring that the anastrozole doesn't have, I suggested we try that first. If it also causes swelling, it will be easier to make the case for the exemestane with the insurance company after failing the other two. I will be staying off of AI for 7-14 days until the swelling is completely gone and then trying the next one. She wants to make sure any SE are from the new one and not residual effects from the anastrozole. She said she seldom sees swelling in her patients and considers it to be a rare SE. The drug page for anastrozole on the FDA page lists it as a common SE - didn't seem like it was a fight worth fighting. She agreed that the level of swelling I was seeing was not acceptable and is moving on to another drug candidate. All in all it was a productive visit. I really like her - just wish she was closer.
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Oh, are there generic brands of letrazole I should try to avoid. I haven't had a chance to look who makes it but I was hoping Teva was one.
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froggie check out this link. https://www.astrazeneca-us.com/medicines/astrazeneca-direct.html. You may be elligible for brand neam.
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Thanks Brutersmom and Peggy. MO thinks the anastrozole is the culprit and has taken me off of it. I'm trying letrazole as soon as all of the swelling is gone. If I fail on that, it will be the exemestane and then tamoxifen. At least that is her game plan for now.
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I wish they would get their stories straight with this swelling issue. The nurse said that "It's not unexpected." The CRNP said "I don't often hear about swelling," but she is a notorious minimizer who laughs off many SEs, including neuropathy during chemo. The MO said, "Usually we see the swelling resolve in 4-6 months."
Clearly it's happening, so what gives??
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Again docs minimizing SE from anti hormone therapy! It infuriates me...Whether you decide to take them or not our SE need to be validated!!
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I had swelling of feet and legs after about a month on Aromasin...stopped it 2 weeks ago and most swelling is gone. Going for an echo on Monday to be sure heart isn't involved- but, given the timing, I really believe it's the Aromasin. Most swelling is gone- finally can see the bones in my feet. Anyway, will go back on Arimidex next week. Wish we were told the same things from our docs. Wow, we are a crazy train, sometimes!
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This is really interesting that so many on AIs are having ankle/calf swelling. I was blaming the blood pressure cuff used during my surgery in May, but now wonder if it's just the letrozole. I'll let my MO know and see if he recommends going off it for a week or 2 to see if the swelling goes down. I have had an ultrasound that shows no blood clot, and then a segmental pressure test to see if it's PAD. I have not met with my PCP yet, but the report says the ankle to brachial index is within the normal range, so I don't think it's PAD. My next stop is with the LE next Thurs.
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I've been on anastrozole since Nov of 2014, had my 2 year followup dexascan and today got my results back: hip and spine are stable, non dominate arm significantly worse. MO wants me to start on the Prolia injections.
I really don't like the sounds of the side effects of the Prolia, especially since my spine and hip are stable. Have to admit I haven't been doing much with the arm exercises, wonder if I can get by without the injections if I do better with the arm weight machines
Anyone getting the Prolia injections and how are they going for you?
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Puffin2014
I had my 2nd Prolia last month. So far Ihave no side effects. I can only speak to my own experience.
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Hearing the attitude of the MO, I would like to share the experience of my 6 month visit with my RO. He is probably in his early 30's. He came in and it was obvious that he reviewed my history before coming into the room. When we were done reviewing it for corrections he asked me why I saw a lymphodema specialist when it was obvious that I don't have lympondema. I explained that I kept getting a burning sensation in my arm and was experiencing limited arm movement despite excercising and stretching. Through research, I learned that this was a side effect of radiation and that I would benifit for an evaluation by a lymphodema specialist so I insisted or let me rephrase I demanded a referral to the specialist. He chuckled on that one. I then told him it that was one of the best $50.00 spent. We talked some more and he ended the conversation with, "I don't think we are doing everything we can to improve the quality of life for women with breast cancer. I am going to make an appointment to learn how I can utilize the therapist better help my patients. We need to do a better job." Wow. Why can't more doctors have his attitude.
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Brutersmom, I want your MO!
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LOL Molly, I had to fight to keep him. They kept reassigning me to other RO. Dang I wish he were my MO. I am seeing a new on next month. I really disliked my original MO.
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