Letrozole joint pain does it cause permanent damage/ease over time?

  • 9 replies
  • 281 subscribers
  • 2696 views

Hello 

I am 9 months into Letrozole. And after a hiccup with different brands causing problems Now on Accord) 

My ongoing side effect is stiffness and joint pain. Worse on getting up after sleeping or rest. Once moving and active ok. 
I do feel like an old lady before I get going. 
my concern is does this continue after stopping Letrozole ie cause permanent joint damage?
As I am only 9 months into treatment do symptoms ease with time ?  
I am taking vit D cod liver oil and glucosamine. Not sure they are helping. 
If Two 400mg ibuprofen a day this helps but I don’t want to take ibuprofen all the time so try to minimise this. 
Thanks. 

  • Hi

    I'm sorry to read about your stiffness and joint pain and I noticed that your post hadn't had any replies yet. This is probably because this is such an active group that your post has slipped off the first page before someone with a similar experience to you has had chance to see it. Replying to you will 'bump' it back to the top of the discussion list where it'll be more easily seen.

    x

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Hi I have been on letrozole for 18months. Different brands seem to have different side effects. I have been given Cipla this time and I will ask not to have this brand again if possible. Feel tired and achy and am getting hot flushes a few times a day and I am 74!!!!.I take cod liver oil as well and adcal d3.....also feel like a very old lady until about midday... nightmare....but hopefully the side effects will be worth the benefits......I too hope that I will feel more normal when I stop taking them...see if you can ask for a different brand.....all the very best to you XXX

  • FormerMember
    FormerMember

    Mine eased after about six months but it still comes back unpredictably. Exercise seems to mean things will be quite good the next day, but it's not guaranteed.

  • FormerMember
    FormerMember

    I’ve just come of  letrazole and gone on to tamoxifen but only just been on it so can’t say yet but letrazole made me feel so poorly and also emotional 

  • Hi, sorry to hear you struggled with the Letrozole......really hope you get on better with the Tamoxifen. I am not feeling good on the brand of Letrozole this time (Cipla). I feel very emotional and depressed too. I wasn't too bad on a couple of the other brands. I had a telephone consultation with my oncologist yesterday and she has recommended putting the brand I have now on the stop list when I reorder at the pharmacy....it's not easy is it......do hope you feel better soon.....all the very best,,,

    .....

  • FormerMember
    FormerMember in reply to Rattybaggins

    Thank you it as really knocked me about sweats joint pains and feeling awful Tired faceI've just taken a break 3 weeks agond started tamoxifen 2 days ago honestly I feel so low and depressed and want to cry and the worst no one understands I love alone and normally are fine but not atCryhe moment Crybut I hope you truly get right yourself take care 

  • Morning, just sitting having a cuppa trying to gather myself. How are you today. Hope you managed to get some sleep last night. Keep going girl......I have peripheral neuropathy in my feet and hands from the chemo which is not easy at all, but I tell myself I am still here to tell the tale. This virus has not helped at all as I am still afraid to venture far. Let me know how you are today.....xx

  • Hi Krysiatennis,

    I was on Letrozole for 2 years and stopped as I could no longer stand all of the side effect, including the bone and joint pain, and days when I could not move due to the pain.  I did try two other meds but again stopped to to side effects (severe depression becoming the worst).  I have been off of all of this type of meds for 1 1/2 years now and my arthritis was blown into over drive.  I had little to no arthritic pain prior to beginning Letrozole but now I have had to turn to joint replacement.  One shoulder and one knee down, next knee will be in a few months. Although I am not positive, I do believe that the Letrozole (and others in this category) is the root cause.  There is a new study that identifies the relationship between arthritis and Letrozole tip drugs. You need to look at your re-occurance rate now vs. time of the drugs.  Most of my benefit was reliazed after 3 years and then I said no more.  I really hope that you do not have simular experience, from my understanding most women's symptoms do go away but now everyones do.  Talk with your Oncologist.

  • Hi Krysiatennis,

    My joint pain has never gone away, in fact arthritis is full blown.  I finally stopped this med after take for 3 years as I could not stand the side effect, many more than just the constant bone and joint pain.  After three years I was satified with my re-occurance rate so I stopped.  Unfortunately my joint pain only continued to worsen.  There are studies that show a link between Letrozole type meds and arthritis.  Not everyone continue pain after stopping the med but I did.  Prior to these drugs I had little no no arthritic pain,  after years after beginning the meds and 1 1/2 years after stopping the arthritis is so bad the I've already had 1 should and 1 knee replaced with the other knee to be done soon.  Remember that everyone is difference but the joint pain never went away and only continues to worsen.  I now have 2 Ortho drs and see a pain management dr.  The one thing I will say is that "it could always be worse"  Good Luck toyou and have a serious talk with your Oncologist and the risks.