Life on aromasin
Comments
-
i am now almost a year on Aromasin and hip, leg and knee pain is significantly worse, even with the supplements I am taking........it is stopping me from exercising as much as I would like, and I feel aged and frustrated......does anyone have any ideas or recommendations? I am reluctant to take another holiday from it as have more recon surgery soon
0 -
Lily55,
I've been on AIs for over two years now, on Aromasin for most of that. It took me two years for most of the pain to go away. I've had flareups in my hips, knees and foot. These I handled by buying really good quality, supportive work, casual and running shoes (for pronation). I'm also careful to mix up my exercise routines from day to day to give soft tissue a rest and not to over extend myself. I switched directions I was running around a loop, which then compensated for a crooked spine. I'd been on mostly NSAIDs until recently when I switched to gin and golden raisins. (Had severe nausea with the NSAIDs.) The biggest change the gin mixture made was no more aching muscles like I had before. I still hobble out of my car like a 90 year old if I've been driving over 30 min, especially with the air conditioner.
The trigger thumb had to be treated with a cortisone shot and is much better now. That and swollen toe joints may or may not be related to AIs.
My suggestion is that you treat each symptom as if it was not related to the Aromasin. I think AIs aggravate preexisting conditions, most of which we have no idea we had. The low estrogen environment is the major cause, but fillers may be another part. Try switching drug companies or ask your MO to switch you to a different AI.
Many of us over time have had less pain the longer we take AIs.
0 -
Unfortunately, I have had more pain as time goes on. I took a planned vacation from aromasin in April and went back on in May. It was sheer heaven. After about a week, I felt like my old self. I am having a lot of foot cramping at night lately. Woke me out of a dead sleep. Maybe I should increase my potassium? I rarely ever had cramps before (charley horse type) so this is a new wrinkle. Had them early in the aromasin days and now they are back with a vengeance! I feel about 100 years old!! My next step will be femara my onc said. She does not like that drug for DCIS though and I can't take tamoxifen so unless aromasin calms down, I will switch to femara I have three months worth of aromasin and they are expensive so gonna finish them. But, being >95%ER+ makes me want to stick with it in one form or another!
0 -
april485,
You might look at how much salt in relationship to potassium you are consuming. You might also check into your magnesium. I recently had leg and foot cramps and that is what I seemed to be missing. Mine have gone away since substituting a calcium w magnesium tab for a Citrical tab which has no magnesium or zinc. I'd not been eating my usually nuts in the afternoons.
0 -
April485, sometimes cramps are due to low sodium and not potassium. Have you had your sodium blood levels checked recently? I have low sodium and for me cramps are due to low sodium. A bit unusual but it does happen. I compensate by salting my food and drinking G2 (Gatorade) per dr.'s orders.
0 -
My sodium levels were all in normal range when I had bloodwork in early June (just checked as I have access to all my medical records online) but thanks for the suggestions! These foot cramps are just horrible! Most of the time they come when I am dead asleep but sometimes in the middle of the day too. They hurt like the dickens! It is like my toes curl up and won't uncurl and the instep knots up. Ugh...very frustrating! Hopefully they will just magically stop like they did last year. I did not a thing and they just stopped...very strange!
Thanks again for commenting! xo
0 -
April, for what it's worth, I am doing much better on Femara than Aromasin or Arimidex. My MO said he would prescribe whatever I would take even though the literature recommends Tamoxifen first and then Aromasin for DCIS. I had muscle aches that woke me in the middle of the night on Femara and discovered through process of elimination that if I take my Crestor in the morning and Femara at night, I have minor muscle aches but they are far, far better than when I was taking both meds at the same time.
Can someone re-post the gin and golden raisin recipe? That might be worth a try if the severe muscle aches come back.
0 -
april485,
It sounds like you might have a version of trigger finger (can happen in the toes). Try soaking your feet in very warm water. Warmth helps my hands when they curl up like this. I've had milder the toe curling, but negligibly. Both have come and gone for me. Your feet must be very painful. May be helpful to see a podiatrist.
savgigi,
For the gin and golden raisins, pour gin over the raisins until they are covered. 1/2 to 1 cup raisins is a good start. Some people leave then out, but lightly covered to let the liquid evaporate. I let them soak in a covered container for a few days, then slip them in the refrigerator. They work better two weeks out, so make your next batch ahead of time in the future. I'd start eating the 9 per day as soon as the gin has soaked up with the first batch. I think it tastes nasty, so I've no temptation to eat more.
0 -
Lily I was on Arimidex for around 14 months and it was pure hell for me. I changed to Aromasin and have been on it around two years now, it's so much better for me that the Arimidex.
It's worth asking your onc if you can change AIs. Everyone is different and has different ses on them. Some women do really badly on Aromasin, but thrive on Arimidex. You don't know till you try
I was considering giving up the AI altogether as it was so bad, but I got lucky on my second try.April, magnesium may help. It can't hurt, if you take more magnesium than your body needs, it just gets eliminated through waste.
Trish
0 -
thanks i was on Femara before and it was sheer hell, i did not feel like me, depressed, more pain than now etc . i was told arimidex likely to be similar as works in similar way, so i think i have to make Aromasin work as 100% er positive!
Thank you for all your replies
0 -
I was on Anastrozole for 3 years, the last year was hell. Been on Exemestane now for 2+ months. I feel great so far. Hope it stays that way.
0 -
I too make gin and golden raisins. I was told by a family friend to try to use Bombay Blue Sapphire gin since it has the most botanicals. But warning, it's expensive. I get it when it's on sale. I take one 14-oz box of golden raisins and distribute in a shallow Pyrex rectangular pan. I cover with 14-oz gin. I loosely cover the pan with a light dishtowel that allows evaporation but protects the contents from dust and place on the kitchen counter. After a couple of days or so most of the alcohol has evaporated. The liquid is very much reduced. I take the raisins and what little bit of liquid is left and put in a mason jar with a screw-on lid. This goes in the pantry and I have some daily. They say to have nine raisins but I don't think there's anything special about that number. I don't bother to count them when I get some on a spoon but it's probably between seven and twelve. I don't know if they help or not but I don't think they hurt and some people swear by them.
0 -
Quiet round here lately...maybe we are all just having too much pain in our hands to type much? LOL! Hope you are all well (or as well as you can be when you take the evil AI's)
0 -
I have been on Aromasin for 3 weeks now. So far it is way better than my first month on Anastrozole was! I hope it stays this way.
0 -
Bren58, for some people it is a cake walk..for some others, not so much. Wishing you ONLY easy times with Aromasin!!
0 -
I started in February and had pain in my joints until early June and then it went away. We went on vacation to Barbados, had no pain at all. Now we have been back from vacation August 8th and the pain is back. It is hard to get out of bed, hard to get out of the car when I have been driving awhile.
I did develop carpel tunnel in both hands and had to get cortisone shots in my hands and I wear splints. I am currently in the middle of a lymphedema flare up, so the fact that I am having pain is really wearing on me.
Is it normal for the pain to come and go? what have been your experiences?
Thanks
0 -
2.5 months on aromasin now, legs achy in AM when I first get up but once I shower they are better, walking 1-2 miles few days a week and they really feel better the days I walk. Hot flushes from Hell though. Last night I had a glass of wine with a nice dinner out and had at least 3 hair wetting hot flushes during dinner.
At least I know it is stopping the estrogen.
0 -
Started Exemestane (Generic Aromasin) in June (I think) after 3 years on Anastrozole. I'm in heaven! No more depression, sleep issues, back, shoulder or neck pain. I might be a tad sweatier but I'll take it.
0 -
My pain on exemestane comes and goes. Right now, except for a kidney infection, I'm blissfully pain free. Though a month ago I missed 2-3 doses of it in a prescription renewal mess up and when I went back on I had all kinds of muscle pain in my legs for a few days.
0 -
my pain comes and goes. I am pretty stiff in the morning; especially my hands. My hot flashes are much worse when I eat sugar.
Has anyone else had eye problems since being on aromatase inhibitors? I have had vitreous detachments in both eyes.
0 -
Just dry eye. I use drops but doxie has had issues.
0 -
Ginger48,
I had a posterior vitreous detachment in one of my eyes less than a year after starting AIs. It's not unusual for women to have them after going through menopause because of a steep drop in estrogen, which is helpful for eye health. So it's not surprising that anyone on an AI is going to be at risk for PVD after a short while.
The problem with PVD is if the retina also detaches. If the retina is not involved, then it's the pesky floaters you have to learn to ignore. That is why anytime you have symptoms, such as new floaters, a dark curtain or flashing lights in your eye, get to an ophthalmologist immediately. If fact, everyone taking AIs and going through chemo should start seeing one if they aren't already. Everyone should make sure during any eye exam that the dr checks for mets to the eye. Very rare, but it happens. It's only a 2 minute extension to the exam.
0 -
doxie- I have had PVD's in both eyes. The flashes down the sides and tons of floaters. My eye dr has monitored them closely and told me what symptoms to call immediately for. I also have terribly dry eyes. I never even thought of the estrogen connection. Just thought it was because I turned 50...I find the floaters so annoying. My vision is definitely worse than pre BC.
0 -
I'm doing much better on aromasin. I too take the generic brand. My hands are tight...if that makes sense... I open and close them to stretch but the tightening is still there. When I get up I typically stand for a few seconds and then hobble along. Same thing when getting out of the car. What bothers me most is that can't wear my heels. I'm a shoe whore!!! I love heels but my ankles are weak. I can't wear any of my shoes!!!!!! Ugh!!!!
I also have shoulder, neck pain. I didn't think it was related to the aromasin. I thought it was due to my lymphedema. Been getting massages which helps. The hot flashes have decreased dramatically since I started the aromasin but I've gained 16pds. Ugh.....I'm working out every day and the scale ain't moving. I'm not giving up though.
0 -
Ginger,
I thought I had low tear production causing dye eye, but it was the lack of oil getting onto the surface of my eyes that caused the tears to evaporate too quickly. I have blepharitis, a bacterial infection (allergies also) that blocks the oil glands in my eye lids. Each time you blink these glands should be coating the cornea with oil. I first noticed the swollen eye lids during chemo, but can't say if chemo caused them. My young resident ophthalmologist has the same condition. What I do know is that being on AIs made the situation much worse.
I now wash my eyes 2x per day with "no tears" baby shampoo and follow with a hot compress. There is improvement. I'll know better when winter comes. It's so humid outside these days, that my eyes aren't stressed as in winter.
0 -
lonnie713 I had terrible back, neck & shoulder pain on Anastrozole. I didn't think it was from the drug until I got off it… and the pain was gone in 2 days!
My feet have changed. It happened during chemo. They got wider and I can't wear heels like I used to either. Not sure if it is chemopause, nueropathy related or what.
0 -
I was just to the eye doctor last week because my eyes never did stop tearing after I finished Taxotere 17 months ago. I thought the constant tearing might be because of a blocked tear duct or something. Turns out it is dry eye due to the AI's and my oil glands are getting clogged. So I am now doing the baby shampoo and the compresses too. Also using lubricating eye drops morning and night and rewetting drops with the contacts. Hopefully this will help, because the constant tearing is very annoying and disruptive to my vision.
0 -
iago, so weird. My feet have changed too. One size bigger and wider, too. Hard to wear heels. I never connected it with BC or AI's. You're the first person to mention it!!!
0 -
AHA! Now I know why I am now a size 7 instead of a 6.5! It is the exemestane! My feet got wider too...sheesh, the gift that keeps on giving.
0 -
hmmm, is that the reason my hips and boobs are wider? my feet are at least a full size bigger...
0
