For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
-
mybee333 before AI everyone got Tamoxifen. There are a couple of reasons why AIs are preferred if you are post menopause. 1. because the SE are less life threatening (if you get them) and 2. because they are slightly more effective. But they have worked well for women for years. The plus is if you don't get the SE then Tamox is LESS taxing on the bones and I believe heart.
edited to at LESS
0 -
Thank you. Those things you mention are good to know. I am definitely going to give Tamox. a good try. I am esp. glad to hear that it can be less taxing on the bones and heart. I already have osteopenia (I believe from my hysterectomy w/ the AIs) and have a strong family history of heart disease on both sides of my family. Both of those concerned me with the AIs as I had heard this some but am grateful for your reminder
0 -
The other day we went to see an art show at a museum. I was very excited to see it. What a shock! I could not stand and look at the paintings! I was in such agony! It is truly frightening not to be able to do what you want to and go where you want to. I wound up sitting on a bench and looking at one or two paintings. When we left my husband said "Next time I'm getting you a wheelchair." I said "NEVER! I won't go!" This is a real dillemma.
"0 -
BTW, when my mother's tumors were found in her lungs, 15 years after her initial diagnosis, she was ready for hospice. The dr said "not yet" and put her on Tamoxifin. The tumors shrunk right before out eyes and she lives another 4 years. She was 84 when she died. Tamoxifin really does work. Of course she was on so many meds for so many reasons I don't think she could have said how the Tamoxifin effected her. She did say she hated all of the meds but I don't think Tamoxifin was anything she complained about. And she was bedridden for a long time and never got blood clots.
0 -
Good to know that about your mom T.! Yeah - the thing too with the pain and difficulties with movement is that I wonder what causes it? I mean, I can see loss of estrogen stuff: brittle nails, loss of sex drive, mild depression, dry skin, etc. But the severe pains, Idk. And no doctor that I've talked to has an answer for that. Nor have I read a good explanation. You just wonder - what is this doing to my body anyway? Not that the research isn't clear that it does reduce chances of recurrence. It is just at what cost? Or what cost for some of us.........I do wish I was one of those that could tolerate the AIs.
0 -
I get three-month supplies of generic anastrozole (90, 1 mg tablets) by mail order from CVS Caremark for $7.73. However, I have a prescription plan in my health insurance, which likely accounts for how cheap my drugs are.
0 -
You really hit the nail on the head! You can feel the damage its doing but why? I did ask my onco when i was on arrimidex and he said that it makes your nerves more sensitive. According to him it does not damage joints. When I went off of the arrimidex, the pain did go away. The trigger fingers went away. I could actually snap my fingers again! But it is very hard to understand!
0 -
Whoa! I'm going to CVS!!!
0 -
I had trigger fingers in my left hand last year on Anastrozole in the morning. I don't now.
0 -
T. It makes sense what you say about nerve sensitivity. That is essentially what fibromyalgia does too- it heightens your sensitivity to pain. I do think the AIs really cause my fibro to flare. It's the combo of the two that makes it so difficult. I wonder though why the drugs do that. You'd think they could make a drug that didn't have that side effect.
0 -
You know fibromyalgia did come to mind, I know it's a controversial diagnosis but I could think of no other disease that makes everything hurt! And so unpredicatably and with nothing known about it. I just heard on the radio that its finally being recognized as a real disease, Whatever it is, this sounds like it. I find it very hard to describe when someone asks "where does it hurt". Where doesn't it hurt would be easier to explain. And YES it would be nice to know WHY the nerves are so sensitive,
I've been on the South Beach Diet for 5 days and the pain has lessened considerably. No gluten in the first phase.
Another big WHY? What the heck is going on? Why should avoiding gluten make nerves less sensitive? But even if they don't know the reason why, I'm going with my own "findings".
0 -
I'm back om Arimidex after taking a month off to see whether the severe joint pain and stiffness got better. I noticed I could get up from sitting a bit easier, but, overall, I didn't see the level of improvement I hoped for. The 'claw hands' went away but, oddly, I developed more trigger fingers while OFF meds. I was considering switching to Aromasin, but saw that it had some SE like thinning hair, acne and insomnia. I decided to stay with the 'devil I know,' so I'm back on Arimidex. I, too, would like to know the scientific reason it causes such joint pain. Longterm, is this joint damage???
Friends are urging me to try Tamoxifen, but my MO feels the AI's are more effective . For all this pain, these suckers better work!!!0 -
Wave.....Arimidex for me caused hair thinning...alot! If you haven't experienced any thinning by now, you probably won't. My hair loss was immediate! I am older too so that likely plays a huge part.
0 -
I don't think I've posted this recipe for awhile: for achy, arthritis type symptoms; here is something you could try: buy white raisins (they have to be white) and gin. Place them in a big jar together and leave them in the fridge for two weeks. Then eat 8 raisins a day. It produces a natural cortisone effect. This is a family recipe that has worked wonders for various relatives, including my mom.
P.S. if it doesn't work, you can dump the raisins and drink the gin....which will make you feel better for a little while anyway
0 -
Controlling my fibro. pain involves watching my carb and sugar intake. I have found stabilizing my blood sugar by eating protein at every meal and snack as well as watching the refined carbs helpful. Idk if this would work for AI pain for some.
Last summer I took aromasin all summer. (I believe all the AIs are pretty similar). I could not sleep more than 6 hrs. a nite. Now I am taking Tamoxifen and experiencing the same thing. Any one else have this issue? A nite here or there would not be a problem but if I can only sleep 6 hrs. a nite every nite I won't be able to function.0 -
I use to take a benadryl for sleep and now I take 3mg melatonin a nite, seems to work for me.
0 -
I was up most of last night and feeling really angry and depressed. I stared arrimidex on May 23.
What a choice we have???!!!
0 -
I do remember getting some weird moods swings with Anastrozole. OMG I once started to tear up when talking about job searching. I was WTF… this is weirder than PMS (don't get PMS anymore due to chemopause). Then I realized it was the drug. But it was only for a month or so. Really strange feeling though. I hope your SE of anger and depression pass like mine did.
0 -
Wonderful to hear that the SE can pass! I suffered from PMS too so I guess this makes some sense. Thanks for sharing.
0 -
A Dr. told me to take diphenhydramine(benadryl)for sleep, that's what the PM is in all medicines...but now it can't be used when on Tamoxifen.
0 -
The raisin idea sounds like fun. I've seen golden raisins, but never white ones. Are they the same?
As for diseases that make you ache all over - try Lyme. That's a nasty one. I've had it or flare ups of it a number of times. The last time was not long after my first chemo infusion - just what I needed:(
The first time I had it I was afraid to go to a doctor because it was so hard to describe the symptoms, plus specific aches actually move around. I thought he'd think I was nuts if I told him I had aches moving up and down my arms until I discovered that traveling aches are a hallmark of Lyme, as is a general malaise - an all over achiness. I finally went for help when my whole body ached so much I couldn't do much more than stand with my arms out so that they wouldn't touch any other part of me. Doxicycline knocks it back within a few days, but has to be taken for more than three weeks to be sure its gone.
0 -
Yes, golden raisins.
Lyme diease is really bad stuff. There is not a funny side to it, other than the story a friend of mine who had a bout of it told: Lyme's really made her thinking fuzzy (another chemo-like symptom), and when someone asked her what was wrong, she struggled and finally announced that she had 'Dutch Elm Diease'!
0 -
Oooh, I'm glad I found this discussion. My hands, mostly the thumbs are all messed up. I tried switching from Arimidex to Aromasin and no luck. Although, I think matters would have gotton worse had I not switched. If I even use my thumbs, I have to pop them back into socket.
I tried using MSM and no luck. I'm going to try the raisin theory now!
0 -
OK what's this new deal about Prunes being high in phytoestrogens? Is this really bad? Seems some studies hint at it being protective and reduces recurrence. They are also an antixodent and high in fiber. I'm confused.
0 -
Macygrace, I have the same problems with my fingers, both thumbsand my right ring finger. So frustrating!!! I went off Arimidex for a month, but saw little improvement. Had considered switching to Aromasin but decided to stay withthe devil I knew. Will try the raisins. Can't hurt.
0 -
I've been on the arrimidex for a week or so, which is a short time. The fingers are still ok. But depression is starting to overwhelm. The tears are back. And there are good reasons but it's sooo hard to know if the tears are deserved or not. i hate this.
0 -
I had terrible difficulty with my emotions on aromasin. I felt so down and fatigued I really began to believe that my life was not worthwhile and there was no point in living. It was scary. With arimidex I think I was depressed but somewhat more irritable, short-tempered. When I stop them I experience a significant brightening of my mood. Down today with tamoxifen. Could be not being able to sleep enough or personal probs. We shall see. Good luck. I always hoped that with time the SEs would lessen but I didn't find that to be the case. The longest I was on one (arimidex) was 8 mos. I wish you the best.
0 -
The few SEs I had in the beginning (insomnia, a few hot flashes, hair loss) have gone away. I take my pill in the mornings, I take Biotin for the hair loss, and I get cold flashes rather than hot flashes.)
But the joint and muscle aches and pains are getting more intense.
I had severe fibromyalgia for ten years prior to BC. During my weight loss program (liquid fast) the pain disappeared - I later found out it was because the diet was gluten-free. I've been gluten-free since March 2012.... no pain. WooHOO!
But a few months after starting Anastrozole in September 2012, the joint pain started again. I thought it was because I wasn't exercising regularly, but even when I did, the pain was there.
Now I'm fairly active around the house and garden, but every morning finds me hunched over, limping out to the kitchen for breakfast. I feel like the Tin Man before he gets oiled!!!
Will see the MO in a few weeks. I really don't want to change to another AI... it's kind of like the devil you know vs the devil you don't know.
Maybe she'll say take a break, maybe she'll give me some nice drugs to stop the pain, or maybe she'll say "Go get you some PRUNES!!!"
I'll let you know....
0 -
You mentioned sleep and I find that is so important! It calms my nerves right down.
After staying off of gluten the pain is almost gone. It's a miracle!
0
