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Topic: Are Femara side effects temporary?

Forum: Hormonal Therapy - Before, During, and After —

Risks and benefits, side effects, and costs of anti-estrogen medications. Note: Please remember that there are good experiences and bad with ALL treatments and this is a safe place to share YOUR experience, not to be influenced or influence others.

Posted on: Oct 2, 2007 06:25PM - edited Oct 2, 2007 06:25PM by san14

san14 wrote:

I've been taking Femara for about 7 months (following 7 months on Tamoxifen).  My  side effects  include hot flashes/night sweats (which are declining somewhat), general muscle and joint aches, and memory failings.  But most alarming, arthritis-like pain in my finger joints has been making everyday tasks difficult.  I understand some side effects can be permanent, like bone loss, and have experienced some that "evolve" over time like hot flashes, but if I were to stop or take a vacation from Femara, would the bulk of the symptoms gradually go away?  Do you know if the arthritis might become permanent?  Thanks in advance for your input.

Miracles keep happening. The sun rose in the east today. -Baez
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Oct 4, 2007 12:50AM - edited Oct 4, 2007 12:50AM by JoanofArdmore

Hi san,

I've been taking Femara for 3 and 1/2 years.It's very hard on me, and I've had 2 long vacations.I can tell you this:

Yes the SEs are temporary.My vacations were 3 weeks long, and by the end, my SEs had either abated completely or gotten MUCH milder.

I HAD arthritis before starting Femara.It was bearable.It became unbearable on Femara.And off it , it became bearable again.

My sleep improved, my memory improved, my vitality improved, I was no longer a 90 year old lady.Wow!

They came back faster than they left.W/in a week I was old & crippled again.

San, the pain in your hands which makes opening stuff and doing things manually a misery is ALSO arthritis.Every one of my joints is in agony!I can show you where every joint in my FOOT is!

Some sisters go to docs and get treated for carpal tunnel.CT is not arthritis, but it is the AI which is causing the inflammation in the carpal tunnel.Everything is from Femara!

And I've found the SEs do not peak!They keep getting worse and worse!

And so OF COURSE they have discovered that aspirin makes us bleed out, and Tylenol is terrible for the liver, and Ibuprophin kills the kidneys.Read--suffer.Loudly or in silence.This is our option!

Sorry for getting carried away!

Yes, the SEs are temporary (If you consider 5 years temporary.Has become a lifestyle, to me.)

Still, I continue to continue to pretend, my life will never end, and flowers never bend with the rainfall . Paul Simon
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Oct 4, 2007 09:48AM san14 wrote:

Thanks Joan of Ardmore.   (I'm writing from Skippack!)   I never had arthritis or any kind of hand problems before so I know the cause is Femara.   This is the only symptom (of many)  that  makes  me consider getting off or taking a vacation.   It's not only joint pain but also "trigger finger" -when I can't straighten out a bent finger (at the top joint) without using my other hand...and it hurts!!

So good to know the SE 'habits' from one with experience.  My Oncologist said it wasn't a side effect at all!  I believe I need to educate him!  I went to hand therapists (in N. Wales) and they ruled out Carpal Tunnel.  They thought it might have to do with the surgery scar tissue pressing on nerves before they went down the arm, but agreed it probably had something to do with Femara.  Since the pain is predominately on the surgery side, my dominant side,  it is possible a combination of things is going on.

Thanks so much!  Your answer is so helpful! 

Miracles keep happening. The sun rose in the east today. -Baez
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Oct 4, 2007 01:35PM Snarky57 wrote:

Hi - I posted this earlier but thought I might repost here. 

I wanted to share with you some good fortune I have had with a supplement.  I have been on Aromasin since mid-April after doing Abrxane for lung mets.  Within a matter of weeks I developed the following:

  • Stiffness in limbs
  • Numbness in hands and feet upon waking
  • Knees cracked when I walked up and down the steps
  • Difficulty stepping on and off of buses
  • Enormous pain in limbs and hands upon waking up -- a lot of shuffling around
  • Stiffness in hips when getting out of chairs
  • Some limping . . . .

Anyway, you get the picture . . .

In mid-August I ordered some of the fermented wheat germ extract, Avemar, basically because I want to do everything I can to prevent a recurrence . .  After taking it for 3 weeks, I found myself running to catch the bus, getting on and off the bus without major pain.  While I still have some numbness upon rising, it is 75% gone.  I still have a lot of  pain in my hands but it is not as bad as it was.  I can't really think of what else this might be.  Some of the studies indicate that Avemar might be good for arthritis so I am going with that as the explanation.

I realize that some people are not interested in supplements and this one is not inexpensive.  I do believe that it is helping to improve the quality of my life.  In fact, I am thinking of hitting the gym this weekend after an eight-month absence.

Hope this helps.

Snarky

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Oct 5, 2007 01:10AM - edited Oct 5, 2007 01:10AM by JoanofArdmore

My Sweet Neighbor,

I'm happy you find my news reassuring.

And I'm so TIRED of docs making EXCUSES for the SEs from AIs.The THEORIES they can come up with!

I have had trigger thumbs.Who knows why they went away.Maybe they got insulted when I kept clicking them open.(OW!)

I refuse to do some things:

See docs about my AI-caused problems.

Take pain drugs.

AIs are totally new.NO ONE, not even oncs know much about them!

WE, the guinea pigs, know the most about them.(But many docs say we're IMAGINING things..!)

Truth to tell, AI will cause pain in any joint at will.And AI causes lots of edema.There are girls here (me too) who could never get their shoes on again.Had to buy new, larger, wider.Summer AND winter-edema.

And edema CAN cause problems, pressing on veins or sinews.My onc gave me Lasix.(And potassium).It did nothing!

Powerful drugs these AIs (which no one really knows about)!

But I DO know when we quit the drug, we will return to ourselves.I was even...energetic again!And could get out of chairs without pain.Imagine!

The drugs have so long a half-life that vacations are not so bad for us.

I know girls who have stopped them before cruises or other vacations, etc.WITH their oncs' blessings.

So please keep on keepin' on, focus on the vacations,and I am here for you if you have any Qs.Feel free to PM me!

JoA

Still, I continue to continue to pretend, my life will never end, and flowers never bend with the rainfall . Paul Simon
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Oct 5, 2007 08:17AM san14 wrote:

Thanks so much to my fellow guinea pigs, Joan and Snarky.  I'll check out your advice.

I went to the Femara.com site where there's a mega-list of SE's, including arthritis.  I should just print it out for my onc. 'cause I know he'll believe them.    ;)

Another interesting site I found is www.askapatient.com where you can type in your medicine name and read what others have experienced while taking it.  Our SE's are VERY common.

Well, carry on girls, Be Well and Thanks again.  Sandy

Miracles keep happening. The sun rose in the east today. -Baez
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Oct 5, 2007 10:13AM - edited Oct 5, 2007 10:18AM by swinn

Sandy,

I've been on Femara for 1 1/2 yrs. I had terrible hand pain  coming from the joints at the base of my middle finger on both hands. I use my hands a lot in my job and it was really getting to me. I said something to my onc about it and he just said it wasn't in his field. So right then I figured I had to take the bull by the  horns and be my own advocate. I made an appointment with an orthopedic doc. He gave me injections first in one hand to see if it would work and when it did he injected the other hand. That's been about 1 1/2 months ago and so far I don't have any pain at all. It's been wonderful. Now I'm just waiting for something else to start but at least for now I'll enjoy being pain free.

Sally

Dx 12/2005, IDC, 1cm, Stage I, Grade 1, 0/3 nodes, ER+/PR-, HER2-
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Oct 6, 2007 10:34PM - edited Oct 6, 2007 10:36PM by Hana

I can also confirm - yes, side effects will go away. I have been on Tamoxifen for 3 1/2 yrs. and another 2 1/2 yrs. on Femara. Side effects of both for me were same and as described by those posting before me. For 5 years I was walking and feeling like 90 yrs. old woman. Very painful.

I finally finished my 5 years on hormone therapy kn August this year. It took total of more then one month before I realised, that I don't need to take two 650 mg Tylenols three times a day for pain. I am actually pain free and I am off the Tylenol.

I started to loose hair about 4 months before finishing Femara. That also may be due to Didrocal - the pills for bone protection,  that were given to me when I started Femara. Very rarely (of course I may be the "rare one") they may cause the hair loss. This specific side effect is also quated on Femara. So I am not sure what caused it. Hair everywhere. Thank God I had a lot, so I am not bold yet.


I think it may be getting better. The main thing is - the side effects go away and after only one month stopping Femara I feel good first time in five years.

Good luck and best wishes    

Hana
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Oct 7, 2007 05:24PM - edited Oct 7, 2007 05:24PM by JoanofArdmore

Ohhhh Hana, I'm so glad for you!Delightful news to hear!

Congratulations on completing "your sentence".And congratulations on feeling good again!

Hair loss?I started having it about a year& a half ago.Makes that 2 years in? My hair was, yes, all over.I do have a lot, and it is very thick hairs.So I was amazed to actually see my hairline recede in male-pattern, just a bit.I whined on these boards and Marin and others suggested a B vitamin, biotin.

I began to take it, and the problem went away.

EXCEPT" Now I'm 3 and 1/2 years in and I have to clean my hairbrush of hair every time I brush my hair.Before hairwash, I brush & brush, take this enormous hairball out of brush, and still the strainer in tub is full, and the bathroom floor...

I've added more biotin and am hoping it will work again before, yes, I'm entirely bald.Strangely enough,I  have to say I'm more irate about the mess from the shedding than about the possibility of baldness!If I could trade the femara-given joint pain for femara baldness I would!

Congratulations again, Hana!Smile

Still, I continue to continue to pretend, my life will never end, and flowers never bend with the rainfall . Paul Simon
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Oct 9, 2007 07:13PM san14 wrote:

Sally - what kind of injections did you get in your hands?  So far my pain is bearable but it will probably keep progressing. 

Yes, congratulations Hana!  May your stamina for getting through 5 years be rewarded!  All of your advice is appreciated, everyone.  Wishing Good Health to us all.

Sandy 

Miracles keep happening. The sun rose in the east today. -Baez
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Oct 10, 2007 12:28AM swinn wrote:

They were steroid injections. It took it away almost immediately. By day 3 it was pain begone! If I'd have known that I wouldn't have hesitated to go at all. Instead I went to my onc first and he said the femara wouldn't do that and it wasn't in his field, etc, etc, etc. So I thought about it for awhile trying to figure what my next step was then decided to call an orthopedic doctor.  I told him my problem and he never told me the femara wouldn't do that. I liked him immediately. He said lets try an injection of cortisone and see what happens and if it works then we'll do the next hand in 2 weeks. When I went back in 2 weeks I said "have I told you you're my favorite doctor today?" He knew then it worked and fixed my other hand for me.

I won't full around with my onc again. Unless it's cancer related  I'll see another doctor. My surgeon helps me more and keeps a better eye on me than the onc.....and he's the 2nd onc I've had. Doesn't say much for our onc in this part of the country.

Sally

Dx 12/2005, IDC, 1cm, Stage I, Grade 1, 0/3 nodes, ER+/PR-, HER2-
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Oct 10, 2007 06:24PM sscma wrote:

What a God-send you guys are.  I just spent an hour at a bone health specialist in order to find out what I can do about my osteoporosis which is, of course, complicated by going on femara.  Fortunately the nurse practitioner who patiently discussed everything with me is a breast cancer survivor on tamoxifen and has the same oncologist as I do.  Anyway, she told me about a good calcium supplement and a bone builder that isn't a bisphosphonate (severe side effects for me).

The side effect that I worry about the most is my vision.  Last February, I had lasik on both eyes (was severely nearsighted) and it was a great success.  Now, two months into taking Femara, I'm having less clear vision.  If this is a side effect, is it permanent or temporary?  This is really freaking me out much more than the joint pain and overall achy-ness.

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Oct 11, 2007 12:51AM JoanofArdmore wrote:

Sorry about your vision.I think it IS from femara.My vision has gone totally geflooey in less than 4 years of the drug.I was nearsighted all my life.Then at menopause I needed reading glasses as WELL as being unale to see afar.

But now my night vision has suddenly gone bum.And I need STRONGER reading glasses.Probably stronger far glasses too, but I cant buy THEM OTC and am afraid if I go to eye doc he will pronounce me blind!Sealed

I developed floaters in my right eye while on Taxotere.They have developed a life of their own on femara.Some days they're not so apparant.Some days they're spiders crawling in front of my eye.

It's impossible to tell, on AIs whether the thing is temporary or will continue for the period of taking the drug.(I call temporary a few months!)Some SEs actually ARE temporary and then leave.Some girls' joint pains have been for just a few months!

I wish this for you, with your eye troubles.

I definately believe the problems WILL go away when you stop the drug and are no longer 85!

My daughter has a marvellous view of my taking AI.She says "How many old ladies are going to become 20 years younger in a year?"

Are you taking Miacalcin instead of Fosamax?I am.

Still, I continue to continue to pretend, my life will never end, and flowers never bend with the rainfall . Paul Simon
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Oct 20, 2007 06:08PM susan7 wrote:

Well, I gues I should feel really blessed.  I have been taking Femara for about 11 months now and had hand pain right at first but it went away.  The only real symptom I have now is that I am so emotional ALL the time.  I cry at anything!  I don't feel sad, I just have uncontrollable tears at times.  I am thinking about gong on a mild  anti-depressant.  I have never been on one before and dislike taking any drugs but I really think this is dis rupting my life so I am going to take one for awhile.  Anyone else have this problem on Femara?

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Oct 20, 2007 07:16PM - edited Oct 20, 2007 07:21PM by saluki

Snarky--Are you taking Vitamin C with the Avemar?

I have read to get the maximum benefits with Avemar you should take it with Vitamin C simultaneously.

  If you take the C afterwards it will actually reduce

Avemar's effectiveness.

You may want to look at this from PubMed

http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=9703878&query_hl=14&itool=pubmed_docsum

Thank you for bringing this supplement to our attention.  It is mighty expensive for a supplement but if it has the potential for metastasis inhibition, I'd like to know more. 

You may want to bring it up on the alternative medicine thread for discussion.

Take care,

Susie

Susie, member since Jan. 2003 Dx 12/12/2002, IDC, 2cm, Stage IIB, 0/1 nodes, ER+/PR+, HER2-
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Oct 20, 2007 08:48PM sockmonkey wrote:

I have been on Femara for 6 months now to shrink a tumor in the lymph notes on the right side of my neck. I have severe bi-lat hip pain. Ever since my initial diagnosis I have been on Klonopin for anxiousness. I have periods when I just cry and can't sleep. My oncologist doesn't think it's a side effect of Femara. Does anyone else have these symptoms?

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Oct 20, 2007 09:31PM saluki wrote:

Sockmonkey--I don't know how your Oncologist could say something like that--I find that infuriating.

Here are the common and not so common SE's of Femara

Pay close attention to Asthenia under common reactions---Its fatigue, debility, weakness, and loss of strength and energy.
As you can clearly see Insomnia is also on that list as being a common SE!

 Femara
letrozole    

    Adverse Reactions

      Serious Reactions
osteoporosis
fractures
thromboembolism
MI
stroke
angina
HTN
endometrial CA

Common Reactions
bone pain
hot flashes
asthenia
arthralgia/myalgia
headache
nausea
dyspnea
sweating
constipation
cough
chest pain
diarrhea
back pain
HTN
headache
insomnia
weight changes
edema
rash
dizziness
infection
osteoporosis
hypercholesterolemia
elevated liver transaminases
lymphopenia
depression
elevated bilirubin
alopecia


Source: Epocrates online

----------------------- 

Fatigue and Insomnia have been a constant for me on Femara  except for my time on Neurontin during which I slept very well but turned me into a zombie. 

I'm currently on a very low dose of amitryptiline (Elavil)  before bed to help with the insomnia and neuropathy (Its an antidepressant with a sedative effect.)  It helps. So does taking magnesium at night.

Take care 

Susie, member since Jan. 2003 Dx 12/12/2002, IDC, 2cm, Stage IIB, 0/1 nodes, ER+/PR+, HER2-
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Oct 20, 2007 10:00PM Lorene wrote:

After reading the above posts, I feel very lucky.  I have been on Femara since the middle of June, and have not experienced ANY of the side effects mentioned above.  I had been on Tamoxifen for 4 years following my mastectomy, then this spring it was discovered that I have metastatic breast cancer in my bones, and was started on the Femara, and i.v. infusions of Zometa.

Anybody else out there with the same problem?

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Oct 26, 2007 11:03PM Wally wrote:

I have been on Femara since  June and also have monthly IV's of

Zometa.  I have a reoccurrence of Breast Cancer that is now in my

bones.  Since starting the Femara I have experienced fatigue, joint pain (especially in my fingers & toes) and memory loss.  My Onc told

me when he gave me the prescription that this would happen.

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Oct 26, 2007 11:49PM Paulette531 wrote:

I took Femara for a year and a half and that crap nearly killed me...by the time I came off it I felt as though I was 900 years, are the side effects temporary...you couldn't prove it by me...it's a long story but I think not.

It's raining it's pouring the old man is snoring..."never never never give up" Winston Churchill Dx 11/3/2003, IDC, 3cm, Stage II, Grade 2, 3/12 nodes, ER+/PR+, HER2-
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Oct 27, 2007 06:16PM Jenniferz wrote:

I've been on Femara for 1 1/2 years, and so far have knee pain, my plantar faciitis (sp) is worse, high cholesterol, my blood sugar is on the march now---upwards, a small catarac (may or may not be from the use of an AI), and thin hair.  Am I happy? No.  Am I going to quit this drug?  Too scared too.  What I am going to do is talk to my onc., and see if I can come off for a while in Dec., take more blood tests, and see what they show.  If I can go on and off for the remainder of 5 years, or more---I think I can do this.  Five years STRAIGHT???? Now that's questionable..

Jennifer

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Nov 4, 2007 12:57AM geekgirldany wrote:

I am writing this for my mother:

My mother was on Femara for 3 years. She stopped taking in Oct 06. She had to stop taking it. Severe joint pain, could not sleep, dizziness, severe weakness, swelling/fluid retention, bone loss, and hair loss. Did it go away when she stopped taking it? No some of the side effects did not go away. She still has joint pain but not as bad as when she was on Femara. She can actually move more. The weakness seemed to get worse. The hair loss got worse when she came off femara. She is getting thin spots on the crown of her head and at her front hairline. 

Learned about the bone loss this year. She has osteopenia (sp?) so right at the edge of osteoporis. Her doctors denied it was the femara causing these problems. One doctor finally said last year that it was shown to cause bone loss. I was like "No really. We have been telling you this for 3 years!". The doctors have been no help to her at all. She has lost alot of confidence in them.

After taking Femara my mother is physically not the same person. She done so well after the surgery and during the treatments. I was so proud of her. She was able to continue going even during the treatments. I was amazed. But after taking Femara she can not even walk in the grocery store or go shopping. She is so weak.

She just wanted to let you all know that she believes that some of the side effects do not go away. 

I know the doctors say the benefits outweigh the side effects. But it seems like these can be so bad... I don't know. 

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Nov 4, 2007 11:19AM san14 wrote:

Thank you to everyone that has commented on your experiences with this drug.  Femara clearly can have dangerous side effects and effects each individual differently.  I am perservering with it (8 months now) and have found my side effects bearable so far....although I came close to calling my Oncologist during a particularly debilitating period when I  couldn't  move my  right hand fingers without so much pain that  I could bearly do my job or sign my name.  The pain is still there, but has lessened.  The "trigger finger" which effected 3 fingers now only effects my thumb...painful yes, but bearable at present.  (Also have sleep disturbance, general achiness in joints, Hot Flashes and night sweats, memory problems -love those sticky notes!- and weight gain.  I think I'm an enabler to this last one!) 

Miracles keep happening. The sun rose in the east today. -Baez
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Jan 22, 2008 09:57AM TNLynn wrote:

I was thrilled to find this web site!  Thank you all for the confirmation that I am not a crazy or whinney.  I have been on Femara for one year and at first experienced only muscle pain in my legs.  Months later, I can barely get out of the car or out of a chair.  Once up, I am good to go, but getting up is a pain.  My biggest annoyance is my hands.  The pain and arthritis like symptoms, coupled with the night time numbness is almost unbearable.  I see a hand specialist who understands and gives injections which help the symptoms subside for a few months.  A God send...  A vacation never crossed my mind, but it certainly sounds inviting!  Hang in, girlfriends...

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Jan 22, 2008 03:13PM joanne_elizabeth wrote:

I tried arimidex and now am on aromasin.  Lots of pretty bad knee pain. I asked the head of a cancer institute in NJ Generoas Grana, who I think has a presence on this board, if the side effects are reversible. She said we don't know.

Joanne_elizabeth
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Jan 22, 2008 03:15PM joanne_elizabeth wrote:

I tried arimidex and now am on aromasin.  Lots of pretty bad knee pain. I asked the head of a cancer institute in NJ Generoas Grana, who I think has a presence on this board, if the side effects are reversible. She said we don't know.

Joanne_elizabeth
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Jan 24, 2008 03:06PM tcbythesea wrote:

I cannot believe your post, I was just taken off Arimidex with the promise that the terrible joint and muscle aches and pains were not a side effect of Femara.  Can anyone add to what I might expect with this medicine new and exciting from Arimidex.

I am wonder about my quality of life at this point.

Gentle Hugs tc

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Jan 25, 2008 11:50AM mrsb wrote:

I am almost finished my 5 years  and have been on AI mainly Femara and have had lots of all the SE on my last visit to the oncologist he stated that there is a 50/50 chance they will be permenant but I am still here and NED so it was a acceptable trade off. Mrs B

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Jan 25, 2008 09:55PM Turtlegrl wrote:

After only a little over a year on AIs I'm on a Femara holiday. What had been intermittent hip pain recently became chronic and debilitating. I'm wearing a skin patch of Fentanyl and taking Percocet on top of that, for cryin' out loud! This is NOT an acceptable QOL. I know from a recent MRI that I do not have a bone met. I DO have a joint that is severely deteriorated, particularly for my age (50). All the surrounding soft tissue is inflamed. My onc is world class but has no specific answers to my desperate questions and none of the joint experts I've consulted to date (PTs, orthopedist) knows squat about AIs. Can anyone point me to research that might help answer:  is any of the damage reversible? After my hip replacement (seems inevitable now) would a return to AIs endanger my new hip? My other hip? My other joints? Since I've already lived through crippling tendonitis from the AIs I know my body is susceptible to these all-too-common side effects and I fear the worst. I'm trying to get psychologically accustomed to the idea of living with greater risk of recurrence. 

Dx 5/01 DCIS R; Dx 6/2004, IDC, 1cm, Stage I, Grade 2, 0/4 nodes, ER+, HER2-
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Feb 3, 2008 10:16AM Mihaela wrote:

Hi! I am from Romania and i've been on Femara for a year. I was on Tamoxifen for a year before Femara, but my oncologist advised switching after my surgically-induced menopause. At first I didn't feel any side effects, but now I have severe joint pain, especially in my fingers. I wanted to see a reumathologist, but after reading all the comments on this forum I understand that all I have to do is to wait until I am not on Femara anymore. I try not to let myself overcome by these side effects, I go to gym twice a week, controll my diet, try to be active, but I have to admit it is harder and harder. I work long hours and this makes me feel like I'll never be able to fulfill all my tasks. I wonder how worse is it going to get.
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Apr 4, 2008 07:49PM audrey123 wrote:

i have been taking fermara for almost a year when i started taking this my eye sight was twenty twenty vision now my eye doctor says the muscle in my eye does not move do you think the femara could be doing this and i also take ingestion for bone cancer it is called zometa thanks audrey123

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