anyone having trouble taking aromatase inhibitors?

dhealey · 01-01-2008, 03:34 PM

Any one on Arimidex, Aromasin, or Femera having severe side effects? Since last March I have tried Aromasin and Arimidex and have had bad side effects from both. Severe joint pain and the lastest side effect bruising. I have gone off them and feel much better. I do not want to try the Femera as I have read the side effects are the same. I can't imagine feeling this way for 5 years. I am scared though, if I don't take them, I will have recurrence. I also want quality of life. Any input would be helpful.

Montana · 01-01-2008, 04:23 PM

I quit Arimidex after 2.5 years. Trigger finger, severe joint and muscle pain in hips, "stabbing" pains all over, neuropathy in feet, general feeling like crap. Not worth the small benefit for my prognosis. I'm feeling better after 3 months off the Arimidex, but all symptoms are not gone yet and probably never will disapear entirely.

sassy · 01-01-2008, 05:17 PM

Debbie,

I had severe side effects on Arimidex. After a year and a half, my onc suggested Neurontin, which helped with the aches and pains and significantly helped with hot flashes, but did not seem to help much with stiff joints. My regular doc is working on my medications, changing me from HZTZ to lasix to help with fluid and blood pressure and (surprise!) my joint stiffness decreased by over half! I am able to do much more and although I still have some stiffness, it has improved tremendously.

I'm not sure if this is a possibility for you, or if fluid is a problem for you, but wanted to pass this along. I feel that staying on an AI is a significant factor in my treatment plan.

My best,

dhealey · 01-01-2008, 06:02 PM

Sassy, Fluid build up is not a problem for me, I am on a blood pressure pill with HCTZ in it. I have tried celebrex, advil, and glucosamine for the joint pain and stiffness. Nothing seems to work. It has also affected the me at work with bending down and lifting patients ( I am a nurse). I know the benefits of staying on it would be great. I just can't feel this way for 5 years. Thank you for your input.

Vi Schorpp · 01-01-2008, 06:46 PM

and will talk to the oncologist this month about a switch. I feel like I have a muscular disease...the only way I can describe it is that it feels like a metal clip in the knee joints and that a rubber band is twisted one too many times and I can't seem to straighten up. Very, very stiff. I talked to my sister-in-law who had been on Aromasin. She was switched to Arimidex and feels much better.

Becky · 01-01-2008, 07:48 PM

I am fine with Arimidex but my poor cousin is on it too and she is in the trial that is evaluating the 3 AIs so our onc does not want her to switch so she has been dealing for nearly 3 years now. She rubs on Aspercream and takes Advil alot.

Karen W · 01-01-2008, 07:56 PM

I have minimal side effects from Aromasin. Both of my wrists and the joints of my right hand hurt pretty badly. My fingers also get stuck which really hurts to straighten them out.

Karen

Jean · 01-01-2008, 08:05 PM

Debbie,
I also had a lot of joint and muscle pain while on Arimidex (one year)
then switched to Femara....90% better -was a major difference for me.
I do find that upon rising in the morning I feel stiffness in my fingers
and ankels but after moving about the stiffness goes away. I also
find that exercise is critial for me. For me the switch to Femara was
just wonderful. You may want to consider Femara, you have nothing
to loose and the Femara may work better for you.

Wishing you luck...let us know if you switch and how it goes.
Regards,
Jean

Cannon · 01-01-2008, 09:06 PM

I second Jean's comments - I was on Arimidex for about a month and the pain ("achiness") was nearly making me cry. I thought it wasn't worth switching, since I had heard as you did, that they are all the same. But my dr. encouraged me to try Femara, and it is at least 90% better - I'm still achy and a little stiff, but not in pain - this I can live with, which is my whole plan!

So, why not try it? No downside to trying.

Rebecca

dhealey · 01-02-2008, 05:21 AM

Thank you for all your input. I have my last herceptin treatment Jan. 8th, so I will ask my onc about femera. I agree it is worth trying. They don't seem to effect me until I have been on them awhile and then the symptoms get worse as time goes on. I am willing to try anything though to keep the cancer at bay.

michka · 01-02-2008, 06:55 AM

I started by Arimidex. I had terrible joint and muscle pain and almost could not walk. I switched to Aromasin after 6 weeks. Not much better. I have joint pain in my hands (the worst) wrists, toes, knees and my back kills me. I feel terrible. I have been on it for 6 months. I asked to switch to Femara but my onc. said it would be the same and that I had to be patient. I figure he wants to see how I am going to feel now that I finished Herceptine (end of Sept.). But as I started Tykerb, all the side effects are going to mix. And on top of all this, I have severe neuropathy in the arm for which I take Neurontin (it helps for the arm, the hot flashes but not for joint or back pain).
I feel my onc. does not care about my pain. I am afraid to stop hormonal therapy because I am 90% ER+ and that the chemo+herceptine did not wipe out the cancer. I will just insist the next time to switch to Femara.
Ask to switch. Maybe it will be much better for you. We are so different and in fact the oncs do not know why AIs generate side effects for some and not for others.
Michka.

Hopeful · 01-02-2008, 07:25 AM

For those with any doubts about switching AI's to lessen symptoms, here is an abstract from San Antonio which concludes that at over half of the women with joint symptoms on one non-steriodal AI had improvement of symptoms by switching to another: http://www.abstracts2view.com/sabcs/...u=SABCS07L_631

I, too, have had a lot of issues with AI therapy. I started on Femara Oct. 1, 2006, and developed severe tinnitus after being on it for 6 weeks. I switched to Arimidex, and the tinnitus lessened, but did not go away. However, I developed severe pain in my thumb joints and hands in general so that gripping things became impossible (much like my 92 year old mother). I went back on Femara briefly (for about 2 weeks), and the joint pain went completely away, but the tinnitus got worse. So, back on Arimidex for 9 months, until I could no longer stand the pain in the hands. I have been back on Femara now for around a month, and the tinnitus has not yet worsened, and the joint pain has tremendously improved. Through all of this I have had chronic constipation that has caused me to stop taking the calcium pills that I was able to take pre-AI's, as well as an exacerbation of vaginal atrophy, such that I now supplement with Estrace cream. IMO, these drugs are aging us 40 years in 2 months. This is a huge quality of life issue, and many patients are terminating treatment early due to side effects. Here is a link to an abstract from last month's bc conference in San Antonio on the topic: http://www.abstracts2view.com/sabcs/...=SABCS07L_1040

I have discussed these problems with my onc without a resolution to my satisfaction. The protocol for Arimidex does not have a light dosing regimen, but Femara does, for women with impaired liver function. I have asked my onc about every other day dosing, vs. every day dosing, as, according to the package inserts, these meds have very long half lives and will stay in our systems for something like a week after we stop taking them. He told me he has only done this for one very elderly patient with co-morbidities. I do not see myself staying on these drugs for 5 years at this rate. I told the onc that, and he said he understood. That being the case, I don't see why I can't at least try the lighter dosing schedule, if it means the difference between stopping them altogether and at least trying to stay with the therapy in some form.

Hopeful

dlaxague · 01-02-2008, 09:02 AM

In addition to daily Celebrex, yoga helped me during the time I was taking Arimidex. I've also heard anecdotally from women who were sure that taking a generous amount of Vitamin D supplement made a difference for them. 'Seems worth a try.

In addition, there seems to be little logic to the switching from one AI to another successes. In the poster at SABCS, it didn't matter which AI the women switched to nor from - equal numbers, for example, benefited (in terms of reduced pain) in switching from Arimidex to Femara as from Femara to Arimidex. Shows how very different each body is, and how it's worth trying all three before giving up.

And if no AI is tolerable, that doesn't mean there's no other option. There is still Tamoxifen. For a long time, it seemed that it was less effective for HER2+ cancers but now it seems that was not true, or at least not true when Herceptin is part of the picture. Resistance to hormonal therapy is more common, yes, but even that is cloudy because HER2+/ER+ positive cancers tend to have lower ER levels, I think. Sorry, 'don't have the studies at hand but do remember reading several.

To ramble a little - one of the last presentations at SABCS was about the enzyme CYP2D6 and how those who lack it do not benefit from Tamoxifen, whereas those who do have it and are able to metabolize (and benefit from) Tamoxifen have worse side effects and thus are most likely to discontinue its use. Which is interesting, but to me the MOST interesting part of the presentation was when someone (Osborne?) said in the Q&A afterwards that given this information, it could be possible that if we separated out the "poor meta bolizers" of Tamoxifen, Tamoxifen would be just as effective as the AI's!

(just to be clear, I imply no analogy to AI symptoms and effectiveness - it's a completely different way of action than Tamoxifen)

Debbie Laxague

Patb · 01-02-2008, 09:59 AM

Just a question to throw out. My cholesterol was going up and the Dr. put
me on lipitor. The pain in my joints and muscles was terrible. When I stopped the lipitor and started with fish oil everything is much better. They will check my cholesterol again in two months, if it is still going up,
I don't know what I will do. Do I continue Arimidex and have high cholesterol or continue Lipitor and have no protection for Estrogen positive
cancer???
patb

Kim in CA · 01-02-2008, 10:53 AM

I certainly find this topic to be of great interest. I have been on Femara almost 6 years and have never had all that much discomfort. I do find that staying phsically active is a huge plus. With all the holiday hustle and bustle I hadn't been able to ride for 3 weeks and was starting to wake up with terrible stiffness. Yesterday I got out there and rode for an hour and feel much better already. Slept like a baby too!

I am also wondering about the correlation of being strongly ER+ and being only slightly ER+ (as is the case with me) and the level of pain you experience. I am only less than 10% ER+, but the oncologist that I consulted back in 2002 at UCSF thought that because of my poor prognosis, it certainly couldn't hurt to be on Femara. I am wondering if you ladies who are more strongly ER+ are the ones who experience more difficulty with the AI's. Just a thought...... But would be interesting to see if there is a connection.

Kim

AlaskaAngel · 01-02-2008, 12:00 PM

No fact, just a guess, but I think the closer one is to complete menopause, the greater the pain with AI's (and the greater protection from recurrence). I'd really like to see a study that separates out how much benefit there really is for those at least risk. If the AIs are is actually primarily making those who are older more miserable, it might make a lot of sense to at least spare those at least risk.

A.A.

dhealey · 01-02-2008, 03:52 PM

I had gone through menopause before starting my chemo and I was highly positive Er/Pr. My cholesterol went up with both the arimidex and the aromasin. I took fish oil for this which did not help. I eat a mostly vegetarian diet, never had cholesterol problems before. I do know that lipitor can cause muscle and joint pain. I just don't know how I will proceed with this as quality of life is important to me. As for the tamoxifin, I can't take that because I am hypothyroid and on medication for this and the tamoxifin can mess with your thyroid. I also have the problem with vaginal atrophy and it is quite depressing as I am only 53 and still enjoy sex. The K-Y jelly and the replens capsules don't seem to help. They can help our cancer, but give us a whole slew of other problems!

Barbara2 · 01-02-2008, 06:45 PM

Patb said: "I don't know what I will do. Do I continue Arimidex and have high cholesterol or continue Lipitor and have no protection for Estrogen positive cancer???"

Arimidex and Lipitor can be taken at the same time. I'm not sure I understand your question. I do take both of these drugs and have for quite some time.

CLTann · 01-02-2008, 08:22 PM

I had joint pain with Arimidex. After switching to Femara, no pain any more.

Debra · 01-02-2008, 09:35 PM

I MUST tell everyone what has made a difference for me. I was on Arimidix, couldn't take it anymore; switched to Aromasin. Still pain and even could not walk down stairs the "normal" way.

December 1 I joined a gym. I walk three miles a day and do some minimal weights. I am about 80% better! It is so worth it. Now even when I skip working out for a couple of days, I really notice the difference; pain in knees, elbows, hands/wrists is worse. I am so thankful I made the sacrifice to start exercising. I take nothing else for pain. No ibuprofin except on occasion for a bad shoulder. Just my two "sense" worth!!