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Has anyone experienced increasing joint pain ?while on letrozole and Ibrance

equavel profile image
19 Replies

I have pain walking ( hip pain)and also have a tendon problem in my l foot.

Am wondering if it is the impact of meds ...particularly the letrozole or evolution of the cancer

Last pet scan did show a small amount of new activity

Next pet scan in Early October Just wanted to see if others are experiencing this

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equavel profile image
equavel
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19 Replies
Moon-and-Stars profile image
Moon-and-Stars

I’m on a Butrans patch to help with the joint pain caused by the meds for almost a year now. I had dreadful joint pain, especially in the morning time. I had difficulty walking down the stairs. It still takes some time for my joints to “warm up” but the pain has greatly improved (not gone) with the patch.

Barbteeth profile image
Barbteeth in reply to Moon-and-Stars

Hi there

That’s interesting re butrans patch...I tried those but they made me feel peculiar...do you get used to them as I guess I could try again...are you on 10 mg strength?

Barb xx

Moon-and-Stars profile image
Moon-and-Stars in reply to Barbteeth

Hey Barb,

I’ve a high tolerance for medication which is unfortunate at times. I’m on the 10mg but it won’t be long until I’m up to the 15mg. It hasn’t taken away the joint pain, but it has made it more tolerable. I don’t feel like I’m a 90 year old stuck in the body of a 37 year old as often now.

I felt no ill affects from the Butrans, aside from local irritation. It might be worth a shot trying it again. It must be awful to feel wishy washy from medication. Did it help with the pain though?

I’ve crumbling vertebra, nerve damage and a few other bits going on in my back (not cancer related) so I understand how physically and mentally exhausted you must be from pain.

xxx

Barbteeth profile image
Barbteeth in reply to Moon-and-Stars

Thanks for your speedy reply

I’m having a corticosteroid injection on Thursday where my fracture is...if that works then I can probably manage on cocodamol and ibuprofen...if not I might try the patches again...they weren’t as good as I expected for pain so I was topping up with other stuff...no wonder I felt wierd

Barb xc

Moon-and-Stars profile image
Moon-and-Stars in reply to Barbteeth

I’d have to agree. I thought the patches would give me a new lease of life but they didn’t. They take the edge off but that’s about it.

I got a steroid injection about 3 years ago. It wasn’t as successful as I had hoped (again I have a high medication tolerance). The pain management Consultant said it was 50/50 going in though so in fairness it could have gone either way. On the bright side I did get a lovely glow from the steroids ☺️. I hope you have better luck Barb.

Barbteeth profile image
Barbteeth in reply to Moon-and-Stars

I hope it works but I’ve had steroid injections in the past with little success

However I think success is often due to the expertise of the person administering the injection...I’m seeing a different consultant on Thursday so hope she’s spot on

Barb xx

Moon-and-Stars profile image
Moon-and-Stars in reply to Barbteeth

Fingers and toes crossed for you my dear 🤞🏻

nstonerocks profile image
nstonerocks

Had pain on letrozole. Since being switched to faslodex injections I feel much better.

Susan1953 profile image
Susan1953

I have been on Ibrance and letrozole 2.5 years. I started having joint pain about 1 year ago and it has gotten progressively worse. The pain is mostly in my hands. I have had 2 injections in my thumb joint that have helped some. My hands also become numb at night unless I wear carpel tunnel gloves to sleep in. I have had the nerve studies for Carpel tunnel and I do not have it.

Sunny2020 profile image
Sunny2020 in reply to Susan1953

I have pain in my hands also. Did your oncologist refer you to a neurologist?

Susan1953 profile image
Susan1953 in reply to Sunny2020

I went to a orthopedic surgeon that specializes in hands. He did carpel tunnel surgery on my husband

Maludagui profile image
Maludagui

Hi 🌺🎀 I have pain in the wrist and one of my fingers snags, my lower back hurts a lot when I get up from a chair, my heels also hurt a lot. I work stop for 4 hours a day and while I'm on the move it doesn't bother me much. It is when I stop and I will continue. The doctor tells me that it is for the medicines. I use creams for arthritis and ice. My hand always hurts. I had an RX and all the bone is fine and at night the pain is worse. But when resting everything calms down. 🌺😍

Julie2233 profile image
Julie2233

I had a month on letrazole and ibrance in January and I had awful joint pain. After a month I was put back on faslodex and ibrance and the side effects disappeared.

Barbteeth profile image
Barbteeth in reply to Julie2233

I agree that letrazole may contribute to joint pain

My back is horrible this morning so I’m going to make myself go for a swim even though it’s easier to doss on the settee and feel miserable ...joined a health club in August and been three times!!!...disgraceful waste of money so I’m going today and maybe the sauna afterwards will help

Barb xx

Mermaiden profile image
Mermaiden

I’m sorry for your pain! I’ve struggled with similar “extensor digitorum longus” pain, a long muscle from the knee to the foot. It’s always with me to varying degrees. I’m not sure what to attribute it to except the meds (Ibrance and Letrozole). I’ve had it all checked out and it’s a mystery why it’s so painful. Maybe we will find solutions here by sharing! May we all be relatively free of pain while we fight this disease! 🙏🏻

mariootsi profile image
mariootsi

I had terrible joint pain on letrozole. Could hardly walk in the morning. Lessened as I kept moving.

Now I find some achyness on Ibrance.

Libra48 profile image
Libra48

I’ve been on Ibrance/Letrozole since March. A few of weeks ago I started having pain in my left shoulder traveling down my arm and through my body. It’s hard to explain...feels like a burning sensation...like something has a hold of my insides. I had called my doctor’s office and the PA told me to go to the ER to get evaluated. This was before my oophorectomy last week. The ER did an EKG and everything was fine. An X-ray of my shoulder/arm was done and only showed generative wear and tear. Was sent home with no answers. ER doctor said could be nerve pain associated with my bone mets. I also have discomfort in my left jaw but dentist/specialist didn’t find anything wrong. I’m healing from my surgery now and will have my next scan in October. I am off Ibrance right now until October 3...so I’m thinking it’s either the Letrozole causing my mysterious pain OR something else is brewing and won’t know until my next scan.

Presence1 profile image
Presence1 in reply to Libra48

Just read your post from September (?) and wondering how your scan went in October? I am interested in knowing about the pain you described...the burning sensation. I’ve been having something similar and my next scan is March.

Hoping all was well.

hurricaneheather profile image
hurricaneheather

having been an athlete, arthritis (joint pain) was triggered and exacerbated with treatment. started letrozole with 2015 mets diagnosis. was switched to anastrozole a few months after diagnosis. less pain. one homeopathic supplement i take is Arnicare Arthritis.

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