Last monday at the age of 52 i started my daily dose of Letrozole. Fast forward 7 days and i feel like ive aged 30 years. Every bone & joint hurts, even bones in my face hurt !My Oncologist said she was concerned i may not do well on letrozole given my pain in recent months (none of which i had before BC). Should I stop? Will it get better or worse. Cant sit on the loo without screeching from pain in my knees. I want my old self back and i want it now 😡

Thanks @arpie, I did see this thread. And yes oncologist said we could try another type. After all the crap with surgery, chemo and radiotherapy not too mention the weightgain and joy of juggling one boob, having to put up with intense bone pain and hot flushes coming at me thick and fast is just more than i can deal with.How on earth do you get up and on with life, get back to work etc without feeling like a freak?Ok @sickgirl you poor bugger. One should be able to wipe ones bum without pain. I did the online stat survey and apparently my 5 year survival rate is improved 3% and 15 years by 8%.Though my oncologist did say they dont really know which treatment (chemo, radio or meds) actually dtops reoccurrence if at all.Feeling like a guinea pig playing russian roulette

Hi @Josephine66 Yes, Letrozole can be a real 'Pain in the Proverbial' .... I was on it for about 6 weeks initially and found it incredibly painful - with everything aching (for a 1% chance of reducing recurrence!) So I had a chat with my oncologist & I swapped over to Exemestane - and I've found it much less painful!There is another thread that pretty well covers most things that might arise now & in the future if you stay ON Letrozole - should you like to check it out! https://onlinenetwork.bcna.org.au/discussion/19231/early-days-on-letrozole/p1Don't be afraid to ask about alternatives ;) All the best

We all react differently as our bodies adjust. Sometimes changing the time of of day of taking the medication can make a difference. You have mentioned side effects prior to starting letrozole.My Onc has suggested panadol osteo for me.Keep a diary and see if the symptoms are similar to what you were experiencing prior. If diet and or panadol osteo (if you can take it) and or other adjustments make a difference. Maybe exercise!https://www.breastcancer.org/research-news/20140131Take care

@Josephine66 - are you able to get out for walks, or resume any sporting activity that you enjoyed before your diagnosis? Taking small steps towards getting fit again & resuming some pleasures in life will hopefully help you with the next step. I have the occasional hot flush with Exemestane, but nothing like the big night sweats etc. I take my tablets at night so they can 'work their magic' during the night ..... so maybe changing yours could help with the pain? I also take an anti inflam tablet as well at night. All the best with your treatment xx@sickgirl - funny how the pain swaps from one joint to another, eh? My feet have been a bit wonky in the last week - but not as bad as when on Letrozole! Hoping things settle down for you soon xx

@arpie it is weird how it moves around that’s for sure. Maybe I’ll try taking mine at night I wondered if that could help at all actually. I just don’t want to have to rely on pain relief meds as a constant. I wonder if it will settle as been almost 7 mths on them now. My onco suggested fish oil so might give that a try unless anyone else has any other miracle natural cures for joint pain?

Letrozole side effects | BCNA Online Network

18 Replies

iserbrown
Member
7 years ago
Hi! I take mine straight after lunch - that is a routine that works for me as I am still busy; like you, did not want to upset my sleep
Josephine66
Member
7 years ago
@arpie blood test was done prior starting letrozole however only 2 & 1/2 weeks post radiation so likely still some inflammation from treatment. Ill ne having same tests again in couple of months. True about pain tolerances and how that can change with time. I was going to move taking tablet to evenings but am concerned it will effect my sleep or how I wake up? Im lucky enough to sleep through most nights and dont want to mess that up too.
arpie
Member
7 years ago
@Josephine66 - with your CRP & ESR 'above the norm' chances are, the Letrozole could be exacerbating your existing pain levels (How long ago were the blood tests taken? Before or after you started the Letrozole?)

The CRP is checking ALL inflammation in your body too - not just your joints.

A couple of years ago, my CRP was 90, then mid 40s, and usually sits at about 10-18. An ESR I had back in 2015 was 42 (when the 'high end norm' back then was 30 - not 19 as on your report.) I think I've only ever had the one ESR done - maybe time for another one! At the time, I was on some anti inflams for an injury (Vioxx) that didn't suit me (not sure they are on the market any more) and I was well on my way to liver failure with it!! So 8.7, whilst 'above the norm' may not be considered 'too high' by the Dr - just to be monitored. My GP back then wasn't worried about mine at 10-18, as it appeared to be MY 'norm' - til it zoomed up to the 90!! THEN she got worried! Everyone is different & their actual 'pain tolerances' are different too. What may be quite painful for you, may be the norm for me - cos I've sort of get used to it over the last 30 years! But check with your Drs to see if there is a specific link to the increased pain - and see if the alternative tablets may suit you better.

My mother had bad rheumatoid arthritis - but I've been told mine is osteo arthritis. Rheumatoid is an autoimmune condition (the swollen knuckles & bendy fingers) whereas osteo is supposedly wearing out joints. Hmmmm ... To be honest, I think mine is probably Rheumatoid - as my fingers & toes are 'east/west' and my mother's were very much disfigured in that way - way more than mine.

It is all about quality of life as well as reducing the chance of recurrence.
kmakm
Member
7 years ago
I'm very stiff in the mornings but when I get moving it eases.
primek
Member
7 years ago
Iinitially had really stiff joints intially. I started on fiah oil and panadol osteo. Once I dropped some gained weight from treatment and became more active within 6 months mostly I have few issues. I now wonder if some of the pain was related to taxol as I did have awful issues with thi chemo.
Anyways for some...it does get better. I found taking mine at night helped also. Why? No idea.
Josephine66
Member
7 years ago
@arpie @kmakm yes thats it ESR & CRP. My CRP is 8.7 (range is less <5) and ESR is 35 (range is <19)
I think oncologist was more concerned with ESR.
arpie
Member
7 years ago
@kmakm @Josephine66 I think you'll find that the blood test may be CRP (C Reactive Protein) - it tests for inflammation. I've always had 'high' CRP due to my arthritis, so would expect it to still be high now, possibly higher! (Tho there is a specific one for rheumatoid arthritis ...... ESR)

I'll definitely get it included in my next bloods, which must be due soon, methinks.
Josephine66
Member
7 years ago
Im going to GP tomorrow so ill ask about that test and let you know. I did hear that about the drop out rate.
kmakm
Member
7 years ago
I have the blood test to check my hormone levels every three months, will be doing my next one this week. I haven't heard about one to check joint/bone pain. Sounds interesting. I had the bone density test before starting Letrozole and the results were 'normal'.

All my drs seem to be test adverse. No one's ever offered me anything other than a blood test, one CT scan to check for viable veins for my DIEP, and the DEXA.

These drugs have a high drop out rate. Hang in there Josephine. K xox
Josephine66
Member
7 years ago
Thanks @kmakm, i dont know how youve persisted this long. Im seriously thinking of quitting after 1 week. Your right, theres no quality of life with all this crap. Right now my collar bones are aching so bad. WTF!!
My Oncologist ran blood tests to confirm i was post menopausal and also to check my bone /joint pain. Results came back and apparently im way over the top of the range. Sorry i don't remember what the name of test was. My bone density is fine. From memory shes concerned i may have early stage arthritis.