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Joint pain

Suite1000 profile image
25 Replies

I started on an aromatese inhibitor about a year ago. At first I had some pain and weakness in my right wrist. This eventually went away. I am now having pain in my shoulders but mostly in my knees. I have been pretty active. Now the pain is so tiring and depressing. I got a massage yesterday and have taken some Advil. I don't want to be taking pain relievers as they upset my stomach. I was surprised at the new side effect, but it looks like side effects can show up within the first two years. How are all of you coping with this?

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Suite1000 profile image
Suite1000
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25 Replies
kpgirl profile image
kpgirl

After 4 years of stiff joints and achiness from AI, I switch between aspirin, paracetamol and ibu, taking half a pill twice a day and doing a 15 minute yoga routine once a day as well as stretching exercises whenever I can or need them. This has made things a heck of a lot better. Maybe you can find something between the three types of pain relievers that does not upset your stomach. I hope you do! Keep at it!

Kdiet profile image
Kdiet

I use Valtoren. Staying off booze is good too as it reduces inflammation.

Mar1on profile image
Mar1on

Hello - first time I’ve posted a reply, but have really appreciated many of the comments made on this site ! Last year I started to have quite severe joint pain in my hip, which came in suddenly. Eventually I realised that a certain lab supplier of Letrozole made it worse. Since I switched to a different supplier , the pain greatly subsided, so - might be worth asking your pharmacy to use a different supplier. It’s the fillers that are different I believe. Hope this helps ,

Best wishes, Lorraine

Elle713 profile image
Elle713 in reply to Mar1on

Thank You Lorraine and good for you for being so astute. It’s not easy to manage all of this and consider all of the possible causes for symptoms.

TammyCross profile image
TammyCross in reply to Mar1on

I found with exemestane that switching to a different generic, from a different manufacturer, really helped. Rite Aid couldn't help - as a big chain, the pharmacists had no autonomy. They sent me to other little private pharmacies. I tried three before I found one that would get the generic that had no side effects for me. (I knew which one because I had been on three different ones.)

With letrozole, I had unbearable pain in my hips. Switched to anastrozole, and it hurt my shoulder and knees, but worked itself out through the day. I couldn't do certain things, and had to have PT to get back strength and range of motion in my right shoulder after I switched from anastrozole to exemestane.

nonna70 profile image
nonna70

I'm dealing with joint and muscle pain. I asked my pharmacist about switching and she suggested a supplement. I haven't found it particularly helpful but have not been taking very long. Cannot take NSAIDS because of CKD.

TwithBC profile image
TwithBC

Hi! Just wanted to chime in as a women on Letrozole (AI) for 7 years now, I have found the pains come and go for seasons and various places -- sometimes mimicking all kinds of things, including bone mets. My point is -- totally normal and, again, come and go...NOT that you should ignore the pains thinking that something is the AI ...I am sharing only from the point of view of someone on the AI for over 7 years... my experience is that strange things come and go. Very best to you.

Merma profile image
Merma in reply to TwithBC

Hi, I too, have been on anastrozole for 7 years. I completely agree and have had the same experience. Usually my pain is in the hip joints. Sometimes, I need to stop for a moment when I’m walking, but it doesn’t affect swimming at all. In fact, swimming improves it. If I swim and then walk, no need to stop walking.

May have to switch to a serd due to recurrence. Feeling a little sad about that.

TwithBC profile image
TwithBC in reply to Merma

merma, I am feeling a little sad with you; so sorry. my time is probably up soon as well...swimming is good for me, too! I feel "loosened" by it and then walking is easier, like you said. Many blessings to you and to all.

TwithBC profile image
TwithBC in reply to Merma

Oh, Fulvrestrant is a GREAT next step...I have heard and researched myself as it will be my next step, too. may it be a GREAT run on it for you.

Merma profile image
Merma in reply to TwithBC

Thank you. May it have a long run with you as well. Funny, we swimmers always find each other. 🏊🧜🏼‍♀️

Bettybuckets profile image
Bettybuckets in reply to Merma

I’m a swimmer to with shoulder joint pain from exemestane.. and xeloda but seems to not be working so also bracing to have to change, I know we are all sad but we can do this! Let me know how you go and what is up next for you!

Merma profile image
Merma in reply to Bettybuckets

Hi Bettybuckets!

I love all the photos and stories about your travels! I am planning to go on a swimming tour next summer. Then maybe I'll have some cool photos to share too.

I'm sorry that that combo isn't working for you. Having chronic cancer is the pits, but they keep coming up with new treatments.

After I go to swim workouts, I always feel euphoric, empowered, and clear. It makes me feel like me - a true merwoman.

For your shoulder, fins actually can help, but don't use a regular kickboard - that will make your shoulder worse. I do kick sets without a board.

Swimmingly....

Bettybuckets profile image
Bettybuckets in reply to Merma

Merma- love you name and the post! I must hear more about a swim trip… I love to swim so much that my sister in law bought me a swimming hole of Scotland book when they travelled there. It was great to dream of going… where will your swim trip take you?

Suite1000 profile image
Suite1000 in reply to TwithBC

I know, it's hard not to think the pain is cancer. Thanks for validating my experience. Feeling much better today.

TwithBC profile image
TwithBC in reply to Suite1000

love it. so so glad.

Suite1000 profile image
Suite1000

Than you for sharing. With this journey everyone is different and things come and go. For now I'm hoping that the pain will go away and am sticking with pain relievers only when necessary. Trying to stretch and walk as much as possible. Fingers crossed. Of course this pain came out of no where after I had enjoyed an especially good week of feeling amazing.🙂🙂

MettavivorDS profile image
MettavivorDS

I was on Letrozole for 6 years. It gave me lots of joint and bone pain that would move around through different parts of my body. Acupuncture and exercise helped a lot.

Suite1000 profile image
Suite1000

So encouraging to see AI working for people for 7 years! So grateful, despite the occasional discomfort.

TwithBC profile image
TwithBC in reply to Suite1000

yes! Grateful.

ClarenceO profile image
ClarenceO

I had similar pain, especially in the hips. It progressed so I tried PT for several months. After it did not improve, I found an ortho doc. He diagnosed osteoarthritis which developed a year or so after starting Verzenio, A.I. meds, etc. which deteriorated my hips. It became increasingly painful to walk. I now wear a Butran's patch for pain now + take two oral meds. My lesson learned: I should have pursued hip replacement immediately upon the ortho diagnosis vs. wasting time on more conservative approaches. Many women on this site said they had gone ahead w. hip replacement and it worked very well. I wish you the best of luck having pain free days in the future.

Suzanne

Suite1000 profile image
Suite1000

I thought AI causes joint pain due to low estrogen.

Kerryd22 profile image
Kerryd22

It could be the case. Low oestrogen seems to cause a lot of issues but my cancer reacts 100% to oestrogen so I’ll put up with dry eyes and some joint pain as long as an AI works. I'm on Exemestane but I have arthritis which is painful especially in my finger joints. That’s been around for a long time and I tend not to worry about joint pain unless it’s especially painful that day.

apple.news/AchnYNYDaR5Wiyya...

I haven’t tried this product but it’s interesting. I take Panadol/Tylenol twice a day and that’s generally enough for me.

Elle713 profile image
Elle713

I started to have increased shoulder pain and knee pain also after 2 years on Ibrance/Faslodex and now on Orserdu. I finally bit the bullet and started a low dose 20mg of Cymbalta. It has helped the joint/muscle pain and the depression/anxiety that comes along with it.

Suite1000 profile image
Suite1000

Thanks for all of the responses My pain is better now. I think I am similar to the people that posted that the pain is intermittent and pops up in different places. Everyone is indeed different, but it is reassuring that some have experienced AI side effects similar to mine.

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