Pain in upper arms, shoulders with letrozole?

Hi yeh I have just one bad shoulder and stiff arm . It’s the one on the side where I had my lumpectomy . 

I’ve been on Letrozole for 7 months and have painful elbow joint, urinary frequency, and even more forgetfulness! My cholesterol has increased and blood pressure is all over the place. Not sure if the alternative oestrogen suppressors would be any better? Anyone in similar situation?

Morning, I have been on letrozole for 2 years now, and apart from the horrible side effects mentioned below by Atacs, a few months ago I started getting bad burning aching pain in my shoulders and neck......some times it was all over and then sometimes just one side.....nightmare.....obviously i was stressed right out thinking of recurrence, which never goes away, so when I had my telephone appointment with my oncologist I explained my concerns to her....(I have telephone appointments as I have neuropathy in my feet and fingers which is dreadful.... a result of one of the chemo's ).......and I managed to get a CT scan which I had a couple of weeks ago.....thankfully it came back all clear.....phew.......

I am 75 so expect a few aches and pains, but it isn't good having these side effects.....my blood pressure has always been a problem too. But she wants me to persevere with the Letrozole, so we battle on......

I try to steer clear of painkillers as I take pills for blood pressure and thyroid so don't want to add more if I can help it...(poor old soul )

Anyway, my very best wishes to you all, and a big hug

Ratty

Hi Ratty, sorry to hear of your on-going pain. I have an appointment with the breast team next week to discuss my woes but they seem nothing compared to what you are going through. I am 70 with pills for blood pressure and thyroxine and you are right, the thought of more pills is depressing.  We may have got rid of the physical cancer but you never get rid of it emotionally and psychologically. We are always on the lookout………

Hi thank you so much for your message, really made my my day... it's tough for us all but we are still here and I thank every day.....so sad that the virus came directly after I had finished my treatment (chemo bilateral mastectomy and radiotherapy) tough that's for sure when I wanted to feel like a 20 ye old again and go out and make the most of it..... instead hit lockdown....but I count my blessings....and I follow a few who are just starting their journey knowing how very tough it is and send any helpful to advise I can......the aches and pains are not good but the alternative is something I don't want to think about.....it is so nice talking to you and I send love and hugs to you.....just quickly I do find different side effects from different brands of Letrozole and a couple of brands I have asked if the chemist can avoid ordering..

Ratty.xxxx

Thanks for all your replies. I am thinking of asking GP if I can try the main brand of letrozole which is Femera I think it’s called. Seemingly much less side effects but way more expensive than the accord brand I’m given 

I had really bad side effects with Accord I spoke to my chemist and they put a stop on that one on my prescriptions.... maybe worth trying a different brand 

Ratty...xxxx

Yes , thankyou. So exhausting sometimes coping with the aches, pains, stiffness and not the way I was over a year ago 

Hi again, yes me too....I thought it would be better over time, but that's not the case.......I get my medication on two months supply....I have been given Sun Pharmaceuticals from the Netherlands this time......I think I did have this brand some time ago and they weren't too bad...my fingers are crossed, just started them......what I found on the Accord brand that really upset me was the fact that I  felt so depressed and angry. I do hope you can get a brand that suits you better.....I'd be interested to know if you can get the Femera, I doubt I would be able to get it as when I spoke to my local chemist about not ordering Accord for me he said he would do his best, but it comes down to cost.....

All the best to you

Ratty....xxx

Hi Ratty my GPS are absolutely crap.. no faith in them. I’m a nurse and I do not have any faith in them at all! There are good GPS out there as I have experienced in my DN nursing years but this praice… get past the receptionist and you have succeeded. I’m building myself up to be polite but firm when asking for femera drug .. I think we deserve the best anti oestrogen medication after all thereatment we have been through. I have required chemo, surgery x2, radiotherapy, targeted therapy along with hormone therapy. Why do they offer us the cheapest anti oestrogen medication after all previous treatment? I want the best hormone therapy treatment so watch this space