ibrance and possible muscle pain? Any... - SHARE Metastatic ...

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ibrance and possible muscle pain? Anyone?

Fight2016 profile image
17 Replies

I have been on Ibrance since 2016. I certainly experience muscle and joint point with weather changes since being on treatment, however., in the last 3 months I have developed right hip pain that seems very positional. Imaging shows no progression. And over the last week-some right shoulder pain with certain movements. Has anyone had this happen? Do you think it’s related to ibrance?

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Fight2016 profile image
Fight2016
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17 Replies
2Hopeful profile image
2Hopeful

I have been on Ibrance 3 1/2 years and definitely have muscle pain. Particularly in my shoulders such as when I raise my arm to get something out of an upper cabinet etc. I’ve been told it’s normal. Not sure if it’s the Ibrance or Letrozole but I can live with it. Wonderful that it’s been working for you for so long! That’s encouraging to me!

Fight2016 profile image
Fight2016 in reply to2Hopeful

Thanks for the reply! I do feel it a lot in my shoulders. Glad to know you’ve been told it’s part of it. No one has told me that.

Stay hopeful. I’ve been stable and I’m not sure they had high hopes for me in the beginning

Zebra2018 profile image
Zebra2018 in reply to2Hopeful

Hello, I have been on IBRANCE since December of 2018. I do have joint Paine especially on my right shoulder. I strech regularly in the morning. bone scan and CT scans are alright. Happy new year everyone and wish you well on this journey that we call life!

Merma profile image
Merma

I think it may be the ai. I’ve been on Ibrance since 2017. The thing that works for my joints and muscles is swimming - especially helps with the hip pain! Best wishes to you.

Discocat profile image
Discocat

Hello

I've been on ibrance for 2 1/2 years but I also take Letrozole and Zoladex. I have muscle and joint pains that come and go.

Sometimes they throb so much at night that I'm kept awake. My mets are extensive bone so when I get these bone aches it can be worrying but all scans show stability and if I ever bring up issues the answer is always that "its the meds". I also notice a weather connection...when it changes and gets wet or colder the pain seems similar to rheumatism.

I think it could be the Letrozole as that does list joint ache as a symptom.

It seems worse after being inactive....so when sleeping or on waking....activity does help to ease the pain. Also Epsom salt bath soaks and magnesium sprays or balms applied locally.

Great that you've been on ibrance for so long ,I hope I also get a long run from it.

Wishing you a happy new year!!

Zoe

LibraryGeek profile image
LibraryGeek

I was on Letrozole for 7 years before I progressed to MBC and did have achy joints, and when Ibrance was added to the mix it intensified the joint pain, although obviously it was also intensifying the benefits of Letrozole as I got 4 good years on the combo. I found gentle stretching exercise was the only thing that really helped, although the knee pain was sometimes very bad.

Jackie x

NPmary profile image
NPmary

7 years on Ibrance is incredible! Good for you. May I ask, how old you are?Happy New Year 🎉

Fight2016 profile image
Fight2016 in reply toNPmary

I just turned 42

13plus profile image
13plus

I'm a bit surprised that so many here think it's the AI. Yes AI's can give muscle and joint pain but in my experience (over 13 years on one or another) it's not something that develops after you've been on it for a long time with no real issues prior to the present. Usually the AI will cause you problems from early on, if it's going to at all.

I developed hip pain after being on iBrance for 2 1/2 years. My CT scan (or was it PET?) showed no progression but I ended up seeing an orthopedist about the pains 2 months later. On the pelvic MRI he ordered new bone lesions were very evident, and my TM's had started to rise (always an indicator for me) so I ended up changing meds. I am having a similar problem right now (new area of the same hip) and just had new scans done. Think I have to change meds again :( And I think my pain might be from the lumbar spine. Hip pain can be coming from the pelvis, or the lumbar spine. Have you got vertebral lesions? To skirt the insurance you could try going to see an orthopedist. If oncology ordered regular scans and it shows no reason for the pain, they will have trouble getting authorization for an MRI, but via an orthopedist you can have more luck. Another possibility is arthritis.

love2golfwell profile image
love2golfwell

I have been on Ibrance and Letrozole over 3 years and have muscle and joint pain every morning. Once I start moving though it goes away and I have been able to play golf pretty much every day and be active. I am currently stable so I believe it is from the meds. I feel there could be worse side effects and as long as I can stay active that's okay. That is amazing that you have been on these meds for so long. That is so encouraging to me. I hope to stay on this protocol for a long time as I know the other meds are more challenging. Best wishes to you. Sending hugs and prayers! Happy New Year!

CalGal56 profile image
CalGal56

Hi Fight2016,

I have shoulder pain as well. I find strength training with free weights and my home TRX system really helps. I also stretch out when I first wake up and before and after I exercise. I am a true believer in body movement since starting treatment on ibrance and letrozole. Good luck and keep on truckin 😊.

🥳Happy New Year!

Gingerann1 profile image
Gingerann1

I have developed pain in both shoulders over the last few months after 3 years on Ibrance. I have been NED for 22 months now so I have to believe this is a side effect from long term use of Ibrance. Next scans are in Feb so I will see if anything has changed. My pain doesn’t bother me enough to take pain meds, it’s just “there” so I’ll live with that as long as the Ibrance keeps me from progression.

mariootsi profile image
mariootsi

I fi@that I'm achy when it rains or it gets colder. Scans were good thank God so I think it's the Ibrance and Faslodex shots. I was on Letrozole before mbc and it was worse!

TammyCross profile image
TammyCross

I had really bad hip pain on letrozole (not on Ibrance + fulvestrant). I switched to anastrozole and had trouble lifting my legs and pain in right shoulder. I found moving helped it ease up. I went off anastrozole and the pain resolved. Completely mobile -- except right shoulder still has some limited movement -- much less limitation -- and some pain. Rehabilitative medicine doc thinks it might be a torn rotator cuff.

Seadrift profile image
Seadrift

Hi Fight!

Also on Ibrance and Letrozole for almost 3 years. Doing great!

My nutritionist suggested I eat dried, tart cherries to combat joint pain. I have been doing this daily with oatmeal and have not had any noticeable joint pain. I buy the Trader Joe's ones.

TexasLady2 profile image
TexasLady2

I have experienced the same thing. Almost feels like frozen shoulder at times. I have noticed that when I don't stay as hydrated as I normally do it is much worse. I have been on Ibrance now since Jan 2016 - 8 years!!!

Dancing profile image
Dancing

hello when my cancer came back after my lumpectomy in 2016 n my mammogram in 2021 I went to see my new breast surgeon n she ordered genetic testing n a full body bone scan. So I am 69 now but was told I have arthritis in my shoulders left knee both feet n my 2 big toes. I have had severe tendinitis in my both left n right wrists. My onc in NC thought it was the Ibrance n stopped it put me on steroids. I could t brush my hair or teeth without excruciating pain pick up a fork it was hell. I went to see an RA dr who made me cry cause i suffered for 3 months n he told me he had more complex patients to see. My husband drove me to an orthopedic clinic. They took walk ins. They did X-rays n gave me a shot of cortisone in both wrists n happy to say no issues since 2022. I stopped my crestor n started to get thigh pain n would rock n message my legs. My ❤️ dr told me to cut back on crestor n other than rainy days n my rib pain I am ok .

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