Aromatase inhibitors - is the joint pain transient?

[Shad]

Many of us have discussed joint pain with the use of Arimidex or Femara. My right knee is often so uncomfortable that I have trouble walking down stairs (was not this way prior to aromatase blockers).

My questions:
Is any real physical damage being done to our joints? Has anyone had arthroscopy and had cartilage damage noted?

What is the physiological basis of the joint pain (if known)?

Are any of you off of aromatase blockers (after 5 years of therapy - is this possible?) and has your joint pain gone away or persisted?

Thanks for all of the group's wisdom.
Shad

[tricia keegan]

Sorry I can't answer any of your questions Shad but am interested in the replies you may get. I take arimidex and feel 90...stiff sore and tired. I'm 18 months past chemo and thought I'd be feeling much better by now.

[rentrac]

I took Arimidex for about 9 months then stopped because of my first recurrence. Not only did my joints hurt, but the longer I took it, the more migraines I had. Things began to noticably clear within 2 months of stopping it. I did find that Effexor XR seemed to keep the pain from being as sharp - a pleasant side effect that Cymbalta advertises it does as well. I found that warm baths, mild exercise in the pool (no weight on the knees) and warm rice bags gave some relief.

Since Tamoxifen, Arlmidex and Aromasin have been less than successful for me, my team and I decided to just put aside hormonal therapy for now. I'm taking Tykerb and Xeloda now after brain mets and now lung mets in the last 4 months. Gamma knife did a great job - my MRI yesterday showed the brain mets had shrunk more than 50% and are essentially tumor corpses that may remain forever as just scar tissue. I can't help but imagine dead bugs lying on their backs with their dead legs sticking up!

Hope the joints feel better soon.
Warmly, Rentrac

[Becky]

I believe the joint pain comes directly from estrogen depletion. Doctors and scientists don't know if it is because estrogen causes an anti-inflammatory effect within the joints or if estrogen down-regulates cytokines which "turn off" the pain receptors. They do think some may be that natural pain reduction mechanisms aren't happening without the estrogen hence the pain (because pregnant women have high estrogen levels and can tolerate alot of pain (and not just the pain of childbirth)).

Some aromatase inhibitors may effect the joint mechanisms more than others and aromosin has a totally different biochemical mechanism of inhibiting aromatase than Arimidex and Femara do.

[Debra]

Thanks for starting this post and I am wondering if anyone has the answer. I have been on Arimidex for one year now. I am 42 and feel like I am 85. I have so much joint pain, creaking of bones etc. I have never felt so vulnerable healthwise. I know I need to be on this med but I am also wondering about my quality of life. I have a high pain tolerance but am starting to wonder how much more I can take. Since the Arimidex I have gained 15 pounds, much more tired and less energy and of course now is the time I should be exercising more. I walk everyday but that is getting to be a challange.
If anyone has the magical answer I would appreciate you sharing!!

[Patb]

Debra
I feel exactly the same way as you. I have been on Arimidex since Nov.
and I feel old. I also try and exercise every day as the Dr. says but it
gets harder and harder and also weight gain. My oncologist says get off
for now and see how I feel but I hesitate to do this.
patb

[dhealey]

I have been on arimidex since Feb. I have alot of joint pain in my knees and hips. I find taking a hot shower in the morning helps loosen things up. If I sit for any length of time I am very stiff when I get up. I do walk alot each day, am ok when I am doing my walk but when I am finished everything aches. The arimidex causes bone loss so I wonder if this is what causes the joint pain. I am also having a terrible time with hot flashes. Any one else have this problem? My onc suggested vitamin E 400Iu twice a day and B complex vitamins. This doesn't seem to help very much. The intensity of the flashes is getting worse and my skin feels like pins and needles are going through it while the hot flash lasts.
Debbie in North Carolina

[PinkGirl]

I am also very interested in knowing the physiological cause of the joint pain while on Arimidex. Because my memory has also gone down the drain, I am not sure how long I have been on it, but it is probably around one year. I think of it as "arthritic-like" pain, but maybe the lack of estrogen and calcium, and the bone loss means it is arthritic pain.

I also feel much older than my years and my joints don't want to move after I have been sitting down or lying down for awhile. But once I manage to get up and walk for a few minutes, I am fine. If I have a busy day, the next day I will be exhausted. I have started taking Glucosamine for the joint pain but haven't been on it long enough to judge if it is working. Like you Debbie, I have bazaar hot flashes. I also get the "pins and needles" thing. Sometimes my hot flashes are like mini panic attacks.

Today I purchased a bike (outdoor) and I am going to start riding it around the block. I also bought a helmet!!!

I have never heard or read of an explanation of why we get joint pain from this drug.

Good luck to everyone with this.

[AlaskaAngel]

Prior to chemopause there is a different fluid balance in the tissues and they are not as dry as they are without as much of the estrogen in our bodies. I think the actual dryness is at least part of the cause for the pain because the "parts" of us that are moving are rubbing against each other without as much lubrication as there was before. That is simple wear and tear.

I'm not on an AI and don't have the joint aching so much but even so my eyes are dry, my ears are dry and itchy, my skin is much drier, and certainly if I wasn't using the Estring that part would be a lot drier than it is.

A.A.

[Barbara2]

On the sheet that comes with Arimidex (from the pharmacy), weight gain is not included as a side effect, but I have often wondered if it does cause weight gain.

Then I've wondered about Herceptin, too, as I gained about 20 pounds during the year of taking the treatment (not knocking either drug, though, as they have done wonders for so many...). At that time, weight gain had not been listed as a side effect of herceptin, but I know that many women from this site have reported weight gain from that drug.

I've not been successful at taking any of the weight off. I need to try harder, I know. I do quite a bit of walking, too....

I also have old bones now. Stiff, especially after getting out of bed or up from a chair. After about 10 steps I get back to a normal gait. I have off and on aches all over my body. When it gets to be too much, I take Motrin. When going for long walks, I can move right a long, but after getting home the bones go back to the same old same old.

[Karen Weixel]

My doc said AIs will cause joint pain like arthritis but not the damage.

Karen

[Jean]

Hi Ladies,
I was on Arimidex for one year...had the joint pain and felt my bones
aching most of the time. I did switch to Femara
and most of the joint and muscle pain has decreased by 80%. My fingers
and ankles are slightly stiff upon first getting up in the morning. But it passes fast...within 5-10 min. of walking.

In answer to damage. I was off all inhibitors for 3 wks. after 10 ten days
my body began to feel like the old me...

hugs,
Jean

[Debra]

Well I will tell you that the herceptin most likely caused my weight gain. I have never had a problem with weight all my life. I am now 42 and was diagnosed at 40. I gained just over 20 pounds while on herceptin. I managed to lose about 6 and then started the arimidex and gained that back.
Debbie from NC, yes, the hotflashes feel like pins sticking into my skin! Especially when I exercise and sweat even more!

I don't want to complain about the meds either as I am thankful to have them available. I have handled this whole bc thing quite well and have been very strong and positive since diagnosis in Nov. of 05 but now I am starting to get more frustrated with the weight gain and bone pain to the point I think I am a little depressed which I have never had a problem with in the past.
I just wish there was an answer. I believe I may talk with my doc about switching to femara.

Pat---I hear ya with your concern about going off it for awhile. My oncologist suggested that at one point but that really scares me!
If I took a little vacation from it and then this beast came back, I would have so much regret.

I will tell you what helps is the fact that I know I AM NOT ALONE with this whole issue!

There are so many people around me that mention, "oh this is all behind you now and your almost on your 2-year mark" and your looking great."
They just don't understand about the physical changes we experience with the meds and post treatment.
I am glad to have all you HER2 members for the understanding!!