anyone having trouble taking aromatase inhibitors?
 

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.

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.

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,

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.

I'm on Aromasin
 

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.

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.

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

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

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

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.

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.

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

Vitamin D, yoga
 

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

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

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

Just my guess
 

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.

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!

Patb: You can take both drugs
 

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.

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

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!!

I have been on Arimidex for six months along with a year of Herceptin for Stage IV breast cancer and have experienced incredible stiffness and pain. At first, it seemed to be in my upper body, hands, and hips, but the past month the ache has really travelled to my feet and knees. I have only tried exercise ,especially walking and it helps some. I still wonder if I should try ginger tea, fish oil, vit D or glucosamine condrointin but I get disgusted and don't try anything. I am 47 years old but I feel- and sometimes look -like I am 70. And incredibly all of this has happened over just twelve months! I'm sure many of you can relate. We are all just wanting to LIVE. My Doctor's response to trying different products for relief was very non-convincing-"well you can take those things and see if it works for you."

I "stuck out" the pains and aches when I first started on Arimidex (same time I started Herceptin, so it was hard to know which was the culprit!) Now, 2+years on Arimidex later, my thumb joint is about the only complaint! I do alot of walking...although now in the Pacific NW, the weather is miserable! I think exercise is vital to help with the aches. My biggest concern is that I had severe osterporosis before my cancer dx, and none of these treatments help that! I also have high cholesterol and take 40mg of lovastatin a day. And Omegas, and COq 10...!!

Barbara2
Barbara in answer to your question. I took Lipitor and Arimidex together
for a while but muscle aches and bone pain were terrible so my Dr. decided
to try different things and took me off Lipitor for 8 weeks and I got much
better. So that is why I ask the question of what to take instead of a
staten drug. I don't want to give Arimidex up at this point. Any suggestions. I am taking fish oil and will get my cholesterol checked in
6 weeks.
patb

PatB, you can take fishoil, red yeast rice, or niacin sr 500 mg daily. All of these can be purchased over the counter and are found in the vitamin section. The doctor I work for prescibes theses when people have muscle aches from the statins.

Anyone familiar with these trials?
 

Is anyone here familiar with The Breast International Group trial 1-07 - the Study of Letrozole Extension (SOLE) http://clinicaltrials.gov/ct2/show/N...s_ex=Y&rank=15, in which people who've been receiving endocrine therapy for 5 years are swtiched to either continuous OR intermittent (three months on, three months off) AI therapy?

Dr. Ian Smith of the Royal Marsden Hospital discusses these trials in the context of proper dosing for AI therapy in the latest edition of Breast Cancer Update http://www.breastcancerupdate.com/bc...df/BCU7_07.pdf

He states in relevant part:

"One question about the estrogen receptor becoming hypersensitized when it is reset. If the estrogen receptor is exposed to low doses of estrogen for a long time - as, for example, during prolonged aromatase inhibitor therapy - the receptor seems to be hypersensitive to minute amounts of estrogen.

Another issue is if prolonged exposure to low estrogen doses hypersensitizes the receptor, then maybe we should be administering these therapies intermittently. So the latest idea being tested in clincial trials is intermittent aromatase inhibitor therapy - for example, 3 months on, three months off."

I am wondering if the side effects of continuous therapy would be mitigated with such a regimen? With a substantial number of patients discontinuing AI therapy prematurely due to toxicity, it behooves the medical establishment to look at alternative dosing strategies, particularly when there is evidence that prolonged estrogen deprivation actually promotes a form of therapy resistance through hypersensitization. This may be a good way to maximize efficacy and reduce toxicity. What could be better?

Hopeful

Hopeful, interested in this post about estrogen hypersensitization. Has there been any followup that you know of to these studies?

Thanks
TRS

Terri,

I haven't come across any. The trial seems to be done only in Europe. I was hoping some of our European members may have additional information.

Hopeful

I have been on Arimidex for about 10 months now. Still have the trigger thumb. The rest of my joints feel fine during the day but at night when I get up I can feel it fairly significantly. As soon as I get up in the morning, my joints are fine.
I do yoga about 3 times a wk, some wt training and running a couple of times a week.
I had one treatment of acupunture and that seemed to open the channels in my thumb and it felt stronger.
My thumb pretty much stays straight most of the time, but in that position, I can still function fine.
During the day, so far (knock on wood), I have no joint pain or discomfort.
Harrie

This is a timely discussion for me as I am seeing my oncologist tomorrow.
My body is so stiff that, after sitting for a while, I have to balance my weight with my arm to get up, and I have an unbelievable 24/7 left hand buzz. My feet/legs also have little feeling after sleep.
I have previously requested to switch to Femera but my onc refused, telling me that both AI's are the same. My reasoning tells me that if they are the same, what is the issue? I liked reading the San Antonio abstract. Thanks.
I think that anything is worth trying for quality of life and I don't understand why my request is not being considered.
I had not considered my ER rating and have now looked that up to see it at 50%. I am now asking my onc how that fits in with Femera and a lower dosage.
I too exercise as much as I can, take Glucosamine and Vitamin D.
And the bottom line is I am the one who is paying for the AI.
Wish me luck tomorrow.

On your side
 

Jaybt, I am wishing you not only luck but a wallop of determination with this. Many patients are giving up these drugs entirely because of the side effects, and sometimes it takes being very persistent with the person who is prescribing them but not taking them. For some changing from one to another doesn't help, but for some it DOES help, and it is YOUR quality of life that is important.

AlaskaAngel

Jaybt, I have tried arimidex, aromasin and lastly tamoxifen which caused stomach distress and a rash, I stopped it for a while and started it again, same thing stomach distress and rash. I had severe joint pain with the other two. Right now I am not taking anything. I have tried to make sure I eat a good diet, I walk 5-7 miles a day and work out with weights 3 times a week. I am not willing to try another AI. I have decided my quality of life is more important. The AI's also deplete your bone density. Mine went from the high end of normal to osteoporosis in 6 months time. Putting me at greater risk for a fracture. Not good. Also cholesterol shot way up. Since stopping these me cholesterol is back to normal and my bone density is improving. For the little help the AI's do I chose not to take them. Good luck with your decision.

What IS the % of help? I understand obviously that the higher ER you are the more likely to benefit, and the more riskier your cancer is the greater percentage benefit just as with chemo.

I'd also like to know the situation with post-12 month Herceptin and Tamoxifen. Is the theory that the Herceptin will continue to enable the Tamoxifen from acting in the negative ways we know it can on Her2 cancer without Herceptin?

Terri,

Your question about Tamoxifen after Herceptin is a salient one. I have read nothing on any tests or studies on this. I think the combination can be safe, but I have reservations about continuing Tamoxifen without doing something to inhibit Her2, as Tamoxifen has been shown to cause Her2- bc to change to Her2+ bc in some individuals. IMO, and just MO (and I am NOT a health professional), adding something like a baby asprin a day (COX2 inhibitor) to down regulate the Her2 after conclusion of Herceptin tx would be a wise precaution.

Hopeful

Hello,
Try taking the pill at night, less side effects.
good luck
sarah

I've been taking arimidex since Sept '06 with miserable side effects. Joint/body aches neck pain and of course the trigger thumb!
I have thought about switching but as highly triple pos I'm just too nervous as so far I'm still doing okay and am terrified I'd recurr if I stop as arimidex so far seems to be working.
My Onc just tells me to try glucosamine/chondroitin which I did without relief. When I told her this she told me to double the dose and most of my pain was probably from lack of estrogen due to my ooph in '06 and was basically age related!!
Unless something bad happens healthwise I think I'll put up with the side effects which are better than the alternative obviously.
I do swim and walk every day which does help for a while but I find once you stop and sit it's almost impossible to stand again without creaking!!

I had all the SE's of Arimidex, especially joint problems. My GP put me on Lasix for BP and fluid, and my joint problems disappeared! Don't know anyone else who has tried this at this point, but it worked for me.

I would be interested to know if anyone else has had a positive response to Lasix or other fluid control medication in reference to joint problems while on AI.

I was on Arimidex for almost a yr. My only real problem was one trigger thumb. Switched off it when I thought it was attacking my hip, BUT that turned out to be sciatica nerve problem. But I switched to Femara anyways. Now my thumb is almost normal. Accupunture helped that a LOT. During the night I can feel some stiffness in the joints of my other hand, but shortly after I get up it is gone.

Have you tried adding Vitamin D and Omega 3's?
 

I know women who have had good results with these supplements, in alleviating or at least lessening the "musculoskeletal" issues of arimidex. The latest thing is to have your vitamin D levels tested, and then to supplement with D3 (and get some sunlight).

Debbie Laxague

A new abstract from ASCO
 

Here is some interesting new information concerning women who suffer from arthralgia while on AI's :

http://www.abstract.asco.org/AbstView_55_35282.html

The conclusion was that an autoimmune process may be responsible for the arthralgias in a proportion of the sufferers.

No pain
 

I want to bump this back up.
I have been on an AI for 2 yrs now. I started with Arimidex and experienced "trigger" thumbs. Acupuncture cleared it up. I switched to Femara and have been on that for over a yr. I have no joint pain and no trigger thumbs. The only side effect I feel is mild stiffening of my fingers at night when I sleep. As soon as I get up in the AM, the fingers are back to normal.
Best of luck to all of you that are experiencing joint pain.