Hi Snowdrops,

Managed to speak to breast care nurse.  Regrding the pins and needles I have in my left arm, she has told me to stop taking the Letrozole for one month to see if the tablets have been causing this.  My doctor a few months ago said, and I have also read about this, that this is a side effect of the tablet.  Anyway at least in a month if all my side effects go - wishful thinking I know, then I will be armed and ready to say I want to try Aromasin/Exemestane.

Thank you for your help and guidance.x

Hi Lilybean 

I'm not one to recommend stopping your tablets without advice first, but I did just that in sheer frustration and misery. We were on holiday in Lanzarote in an apartment we had stayed many times before and I just couldn't manage the steps up two levels and then the stairs inside, it meant I couldn't manage getting out and about and I only went upstairs,and down, once a day. So I just stopped taking Letrozole. Within a week I was noticing the difference. That was November. I wrote to my consultant and told him my problems and that I had stopped ready for my next appointment in January but he had moved to another hospital. The locum was just "ticking boxes" and left me with no medication. Finally a new consultant was appointed and I saw her in October, she was not happy and put me on Aromasin and saw me again 4 months later, and now I am back to annual appointments and manage much better now. Life is not perfect, I have had both knees replaced since then but the long muscle aches and pains are gone. If as I expect I have to take them for another 5 years I am happy to do so, I couldn't have taken Letrozole any longer.

So, good luck, keep asking, and take care.

Hi Snowdrops,

No matter what, your advice has been very helpful.

I am glad also that you are managing better without the Letrozole.

Keep safe and healthy

xx

I agree.  I have moved onto Tamoxifen 2 years ago because Letrozole & then Anastrozole crippled me.  Now I'm getting side effects with this, although I think they are better than the others.  Weight gain, but the worst is Tamoxifen tummy, bad acid reflux & more recently often sick.  Been on medication 6.5 yrs & really thinking about giving up the medication.  Was originally 5 years then they said 7.5 & 2 yrs ago said be on it 10 yrs.  There is a Predict tool by cancer research online & you put in all your details etc & it gives you the percentage benefit of being on meds for x number of years.  You can change the years to see the benefit after 5, 10 or 15 years.  It wasn't of much benefit to me after 10 & 15 yrs.  1% & 3%.

I'm on tamoxifen after coming off letrozole which was awful I could barely walk . Tamoxifen is better but still has side effects. Achy joints , fatigue and weight gain. Although I've read that's a myth , so maybe it's me eating to much. Lol my sister was on tamoxifen for 10 years just came off it, doing good. 

Hi I stopped taking Letrozole 1 month ago after being on it for 7 months.    This was because I had pins and needles down my left arm (so bad that when I walked I had to hold my arm up to my chest to try and relieve the pain) - my doctor also having told me that a side effect of Letrozole is carpel tunnel syndrome.  I discussed this with my breast care nurse (following very helpful tips from Snowdrops).  I have now gone just over the month and the pins and needles are virtually gone.  I have just started Anastrozole - so fingers cross.  Another side effect I had when on Letrozole was the weight gain around my middle.  Walking 12,000 steps a day to and from work plus a Keto diet had no effect - but I now think there is a very slight decrease in the weight gain round my middle.  Just hope that these side effects dont come back with this new drug!!!!!

Pleased my tips helped with your nurse, hope you do well with Anastrozole. I was on that first of all and with hindsight it wasn't as bad as I thought, I was prepared to try it again when my consultant offered me Aromasin which I am still taking. Good luck. 

Thank you snowdrops.  I did put Aromasin forward as a suggestion - but offered Anastrozole instead - happy to give it a try.

Thanks again

xx

Hi Lilybean and Sunflower,

I apologise for not getting back to either of you. I am not getting any notifications at all through from the site for some reason and only found your replies tonight.

Lilybean. I'm glad to see that you have now started on Anastrozole and, hope that you have fewer side-effects with this.

Kind regards,

Jolamine xx