Life on aromasin
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Thanks for that, Bliss.
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Well I guess I finally have to start exemestane. I tried to get my prescription filled and was surprised by how expensive it is. With my insurance at a local pharmacy it was going to be over $200. I have called my pharmacist and my insurance and found out if I do mail order it will only cost $20. The only difference will be the manufacturer. The expensive one is manufactured through upsher smith (sp) and the cheaper one is manufactured through West ward. Does it really matter? The pharmacist said the medication is the same and the fillers are different. Ugh. I'm not ready for this
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Hi Bliss58: Great news to hear today. I was on Anastrozole for 8 months with very few side effects then started have terrible leg pain, stiffness. Took one month off and leg pain disappeared. Saw my oncologist today and I am switching to Letrozole. I sure hope I have success with it, 17 months would be great. Take care and thanks for posting
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98hgmmom in Ireland I receive the exemestane through social insurance. This means I get it free but that I will receive whatever brand is currently being authorised by the Health Dept. I was recently (about 3 or 4 months ago) changed from brand-name to the generic version and thankfully I personally have noticed no difference.
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Thanks feline. Hopefully I will be fine with this manufacturer. I’m trying to think positive
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Alwaysbepos, I have been on exemestane for only two months and had to stop last week due to brain fog, anxiety and knee pain. Was on armidex before that and stopped due to similar problems. I switched pharmacies to get the Greenstone brand of exemestane after reading some woman have fewer side effects from it. Will try it after another couple of weeks break. Hopefully I do better! After one week off the exemestane knees still sore and still some anxiety.
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Does anyone have problems with standing and walking? Occasionally, my legs feel weak and heavy when I first stand and during the first few steps. I'm sometimes worried that I may fall. Is this normal?
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I am now 13 years out from my original diagnosis. I was on Tamoxifen for about 8 months. Totally couldn't handle that. Then I went to Arimidex for approximately 2 years. Severe bone and joint pain and walked with a shuffling gait when I would first stand. Developed severe carpal tunnel and finally took about a 2 month break and went totally off the Arimidex.( the carpal tunnel went away as did my joint distress). Began Aromasin .. which I am still on to this day. I have developed some joint aches as the years progressed but never like on Arimidex. I have noticed that I have terrible memory issues ( no dementia ) which my doc thinks is med related.
Although I am still at high risk for distant recurrences I am just tired of taking this and just can't pull the trigger and come off for good. I keep wondering how I would feel with no AI in my system .
How many of you have taken the AI for as long as I have and what are your side effects at this stage of the game ?....I would be very curious.
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I switched to Greenstone by asking my pharmacist to special order it. The insurer did approve the change. It doesn't look like they are paying any more for it than the previous brand. I think it is marginally better, from another poster I learned this is the only generic with the same formulation as the non generic aromasin. She said West Ward brand was the worst and that is what I had been on. I have rheumatoid arthritis like symptoms in my hands from exemestane generally (Letrozole attacked my knees).
I am experimenting with supplements. I do think that taking Evening Primrose Oil (1000 mg 2x a day) has made a difference in the severity of the symptoms. I may up my dose to 3x a day..another poster had recommended it. Consumer Lab says that it has been used for Rheumatoid Arthritis so it makes sense. I take Move Free Ultra from Costco (HA,Boron+) which helps my knees. I am also taking Glucosamine/Condroitin for knees. I recommend subscribing to ConsumerLab.com which tests the various supplement brands and advises on the studies and uses for them. No ads, so they are not trying to sell you something. Its worth subscribing at least for a year. I am also using CBD lotion. That helps a little bit. Just trying to get the symptoms to a point where I can tolerate taking the meds for years... Don't forget to take your Vit. D for the bones...
Gee, and I thought it was the statin making me stupid....Its really offensive to me how little information there is in the medical community on dealing with AI.
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One week after I complete 30 radiation treatments both my hands burned like crazy! Day & night it was a screaming burning pain! I was not able to sleep & wished I could cut both my hands off. Really. I had carpal tunnel release surgery on both wrists & instantly it became normal again. I began taking Aromasin while this was going on but I think my hand burning was due to radiation & not Aromasin.
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Notthrilled and Levon-
Two months into aromasin and my knees ache-- exercise helps with that. My hands got much more achy than they did on Tamoxifen. Also, intense burning through the insides of my fingers/joints when I moved them in a certain way. I also felt a burning sensation on the surface of my skin around the joints and knuckles-- they felt raw. Had a little of this on Tamoxifen, but it skyrocketed on exemestane. Anyway, I had an old script for celebrex- 200 mg twice a day. Have taken it for two days and the difference is amazing. Instead of the intense burning I only have a little (and a little tingling too), but this at least is doable. The difference is night and day. Also, the brand of exemestane I take is Greenstone.
I will say I feel like I am gaining weight on the exemestane. I am eating well, exercising a lot, cut way back on the wine, and still- putting on weight. My onc said it was from getting older. I told him I was never overweight before, and he said well you were never 57 before. I still feel like it is the exemestane tho. This could be a deal breaker for me.
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hi Little,
Yes, I have just gone through the worst case of diverticulitis I’ve ever had. I’ve been on Aromasin for 6 months. I started it after lumpectomy and radiation. I’m a vegan for health reasons so I was surprised to come down with dvt. I just read about a study of over 9000 patients and they tracked diverticulitis flare ups on Aromasin. It’s listedin the more rare side effects. But I personally didn’t make the association initially to consider Aromasin as a potential cause. So maybe other women don’t recognize it as a cause of a diverticulitis flare up.
I was prescribed Cypro and Flagyl and I cleared up quickly. I hope you had a quick recovery as well! Good luck to you!
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Welcome, PositivePeople! We're glad you've joined our community, and hope it becomes a place of support for you. And we're glad to hear the diverticulitis cleared up!
The Mods
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I was just put on the drug now and didn't realize how expensive this drug is. I was on assistance when I was getting Ibrance thru Pfizer. Anbody know if there is any assistance in getting these meds.
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I am having to discontinue Tamoxifen due to painful leg, thigh and foot cramps. Considering Aromasin, Femera and one other med. I would like to hear how people fared on this drug. I have already had carpel tunnel and dont want that to come back and knee surgery as well. Future does not look bright on this side of the conversaton.
What is your experience? I know everyone is different, yet experiences shared helps.
Angelsgal
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Hi Angel, when I switched from tamoxifen to exemestane (aromasin) I never had another muscle knot (mine were across my back and shoulders - boy that Tamoxifen can do a number). That was 3 years ago. It was a very good thing about the switch for me. Best wishes to you. XX
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hi Angelsgal
I have been on Aromasin for only two months (after a year o tamoxifen). I find the Aromasin much more tolerable than tamoxifen. My side effects were different from yours- I had extreme fatigue, loss of energy/motivation and a feeling like a black cloud was over me. Lesser side effects were hot flushes and stiff/ painful hands. The only Se so far from the Aromasin is that my hands are stiffer with burning sensations, and my knees are stiff. Exercise helps a lot with this These for me are much more doable and I am enjoying being happy again.
I wish you good luck with this
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hi Angelsgal
I have been on Aromasin for only two months (after a year o tamoxifen). I find the Aromasin much more tolerable than tamoxifen. My side effects were different from yours- I had extreme fatigue, loss of energy/motivation and a feeling like a black cloud was over me. Lesser side effects were hot flushes and stiff/ painful hands. The only Se so far from the Aromasin is that my hands are stiffer with burning sensations, and my knees are stiff. Exercise helps a lot with this These for me are much more doable and I am enjoying being happy again.
I wish you good luck with this
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Hey. Haven't posted in over a month. Finished rads. Saw my onc today. Had a long convo about Aromasin. Having BC twice and being BRCA2+ he REALLY wants me to take it - for 10 years. Ugh. He scared me into taking it so I'll try. Took my 1st pill tonight as he said side affects are generally less that way. We shall see. I told him the cost ($75/30 pills!) and he said I could get it for less with coupons and such. I see him next Feb. for blood work.
J~
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Best wishes Jaybird627
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for those worried about AIs, just take one of them, and see how you feel. I took one for 6 months and felt horrible, changed and felt almost as horrible 2 months later, and tried the 3rd and 5 months later, i can tolerate my few side effects. I am involved in a local study re AI pain, and the biggest thing is aerobic exercise, light resistance exercise (light weight, body weight resistance like push ups, sit ups etc), lots of water, limited /eliminate processed foods, limit/eliminate inflammatory foods ( sugars, breads, pastas etc) and eat LOTS of veggies at every meal. HTH
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Okay so after a week on Exemestane I feel okay except that my back aches. Not a lower back pain from overdoing yardwork or similar but a higher up, middle of my back, pain. I have a new mattress so it's not that. I noticed the pain right away. Is it my imagination? Psychosomatic? no joint pain. Been taking tart cherry juice almost daily. Have not done any real physical work other than go back to work but I started back to work before taking the exemestane. Is back pain a side effect? Also, while my appetite during the day is normal or I get REALLY hungry at night after dinner. Never felt hungry at night before. Is this why women gain weight when on an AI? Does it increase your appetite? Thoughts? Thanks!
J~
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Back pain is a SE of all AIs. It really torments me. They also affectappetite. I lose mine and don't eat. Others may do the opposite.
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Jaybird the exemestane is a steroid so I guess it is not beyond the bounds of possibility that that night munchies is a particular SE it is having on you. Perhaps you could experiment with the time of day you take it. I take mine at breakfast but I know some ladies take it at night and I am guessing it is a case of finding what works best for your own particular metabolism. Best of luck.
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Hi Gals,
After 1 month on Exemestane I do have some aches but they're manageable. It may be due to the rainy fall weather but maybe not. I'm going to take another joint supplement and also make sure I take the tart cherry juice daily as I've read that helps with joint pain.
My doctor has just switched me to Aromasin (will receive via mail, not sure which mfgr.) because of the high cost of the Exemestane (via my mail order insurance). I'll see if I have any different/worse side effects. If I do, I'll switch back and pay $85/mo. for the Exemestane.
Anyone here gone in this direction? Now I need to look up side effects of Arimidex.
My appetite is back to normal? No real night time munchies other than the normal if I am having wine (cheese & crackers snack) or scotch (something salty). I think on the days I'm super busy and don't eat enough I get hungry at night after dinner so I'm not blaming the drug at this point as I don't think I've gained weight this past month.
That's all for now. Life goes on.....
J~
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Hi Jaybird, Capecodgirl and felinfeline,
I started Aromasin last night and been off Tamoxifen for a month. Leg cramps have decreased considerably though I still get some at night when I sleep and am able to shake them out. None of those grand maul cramps that had me screaming like in labor.
I havent been on for a while so it was good to give you all an update.
Angelsgal
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Hey Angelsgal,
I couldn't tolerate Tamoxifen, only took it for a month or so (I don't remember). Glad you're feeling better.
I take a lot of supplements (I skip some occasionally) and now take another! With my back pain and some joint pain I took 2 Wobenzym at bedtime and woke up in less pain (despite getting in a car accident yesterday afternoon, went to bed with back pain). I'll see if it is a supplement that helps long-term.
J~
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I have been on Letrozole for 2 months with severe leg and all over joint pain and insomnia. I am 70 years old and previously very active. I decided to stop the Letrozole as it became a quality of life issue with me. Does anyone know how long it takes for the side effects to stop. I have been off the Letrozole for 2 weeks and so far no let up in the pain and stiffness. Thanks for any advice.
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Goldfish, when I went off Letrozole last year after 17 mos. taking it, my side effects went away completely within two weeks. I felt much better after only two days, so I'm not sure why you wouldn't be feeling better. Maybe it has something to do with how quickly we metabolize the remaining drug in our systems; I'm 59.
Jaybird, did I read correctly that your dr. is switching you from Exemestane to Aromasin because of the high cost? If so, that's odd because Exemestane is the generic of Aromasin, so I can't imagine why it would cost more than the brand name, but maybe you got that reversed in the post? I was originally on Anastrozole, generic for Arimidex, and suffered greatly for 7 mos, mostly last two mos., before my dr. switched me to Letrozole. The side effects seems to be pretty similar for all the AIs, but everyone is different, so the only way to know which one works best for you is to try them.
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Thanks Bliss58 for the reply. Maybe it just takes longer to get out of my system because of my age. My legs still ache pretty much all the time especially at night. My oncologist said to go off the Letrozole for 30 days and then will probably try Exemestane. Are you doing better on the Exemestane? The next choice would be Tamoxifin. I'm having a hard time trying to decide whether to just refuse all meds and enjoy my active life due to my age.
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