Hi, I’ve been on Letrozole for over 18 months and have bad pains in joints of my toes. I’d describe it as ‘stinging’ sensation, can’t sleep when it’s like that, Neurophen doesn’t help. It’s inflammation of the joints. Also sensitivities running down my legs and joining up with the joint pains in toes.
I’m now not taking letrozole for 6 weeks to see if it improves. Is the inflammation likely to be permanent?
Hello Bellas
I have just completed two weeks of abstinence from letrozole and the burning pains in fingers and toes have not diminished. I have been granted a twelve week trial to see if the peripheral neuropathy and increased tinnitus will subside. So far I have seen no improvement in all the side effects but I wonder if the abnormally low level of vitamin d found in my recent blood test could have a bearing on them. I have been prescribed 1,000 IU capsules to correct the deficiency and hope that they might help with my problems. Perhaps in a few weeks time we shall feel better. If not, we will know that this awful inflammation may be a permanent fixture thanks to having to take letrozole!
Hi, I have peripheral neuropathy (pn!) but it’s not related to breast cancer, I’ve actually got rid of most of it. I developed sharp stabbing and shooting pains, particularly at night. My feet are numb, think they’ll stay like that but I flex them to try to improve it.
Amitriptyline and then duloxetine didn’t work so after nearly a year I tried acupuncture. This is known to work and it did, took a few weeks as it’s not overnight but the effect was cumulative. It also helps me with general wellbeing and relaxation.
I massage my feet before bed and in the morning unless I’m in a rush, sweet almond oil (a carrier oil) with a few drops of frankincense essential oil, it really helps I find.
My joint pains in toes are related to the Letrozole I think, I’m on a 6 break to see what happens.
Please keep in touch if you’d like to! x
Hi, I forgot to say that if you’re thinking about acupuncture, ask your GP or Dr about getting it on NHS, as it’s cancer caused. I couldn’t as mine wasn’t. x
Hi Bellas
My situation is somewhat complicated as I have had neuropathy for many years due to fibromyalgia but recently I have experienced very painful neuropathy in both hands and feet which I think has been caused by letrozole. I asked for a blood test because I wondered if I had become diabetic or pre-diabetic. This was negative but an abnormally low level of vitamin d was dicovered despite the fact that nine montnths ago both my calcium and vit d levels were normal! I can only conclude that Letrozole is having an adverse effect on my 82 year old body and that is why I have been granted a 12 week reprieve. I also am experiencing a lot of pain in the pelvis and I am having an x-ray tomorrow to establish the cause. My GP wants to find out if I am now suffering from arthritis brought on by the tablet and hopes to discount a secondary cancer because my prognosis is classed as poor according to my NPI on the pathology report. I have been given co-codomol to help with the pain but the only effect so far is to make me sleepy!
I was given amitriptyline to moderate the fibro but had to discontinue because it was causing hair breakage (which is happening now thanks to Letrozole!)
I have been soaking my feet daily with moisturiser which seems to be dealing with the redness so I shall have to be patient and see what happens in the coming weeks. When things become clearer I shall ask about acupuncture but at present everything is a bit of a puzzle and as I am told I shall have to continue with the dreaded Letrozole I shall just have to wait and see!!
I hope your side effects resolve soon and please keep me posted when they do.
Best wishes and many thanks for your advice.
Hi Rica, I was just wondering how you’re getting on and hope that you’re alright.
My consultant said to stop the Letrozole as it was giving me burning pains in my feet. I’m low risk thankfully as regards having to take it (or not now!). I’ve found Aloe Vera gel helps, as it’s cooling and thought it might help your neuropathy as well?
I found a section on this site with guidance on complementary therapies, which can go alongside cancer treatment. As you can probably guess, I’ve found them good for me ! I had a back massage last week as I’m stiff and was getting a lot of lower back pain and it’s helped a lot. Anything that helps me feel better is what I say 
.
You mentioned that you might have arthritis? There’s lots of advice on (sensible) websites about foods that might help this. All my best, hope you’re okay, A.
Hi Bellas
My x-ray results are through to my GP but I have received no written report yet. The surgery left a message on my phone asking me to make an appointment with my doctor because he wants to discuss them. Unfortunately I cannot see him until the 30th July - typical!! - but I will let you know when I have a diagnosis.
I am pleased to hear you have been allowed to stop taking Letrozole. I think this awful drug needs to be examined more thoroughly by the medical establishment when it is inflicted on us and obviously can do serious damage to our bone structure. I am hoping I shall be told to discontinue it but I think I shall have a battle with the GP and my oncologist if I insist on stopping it which is contrary to their advice.
I shall let you have an update when I have more information. Look after yourself and keep up the massage!
All best wishes
R.
Hello Rica,
Just to say thank you for your reply. I was expecting to have to be firm that I wanted to stop the Letrozole, but it wasn’t like that. I rang my nurse to ask for some more info and she asked me about the side effect.
I was already on a ‘hormone holiday’ where you stop taking it for 6 weeks, she said that I wasn’t going back on it if I didn’t want. I didn’t even have to ask! Consultant agreed with her. I was so relieved I had a tear while I was on the phone.
If you’re nervous about talking to them, why not take someone with you?, or ask Patient Liaison if they can. Let me know how it goes! I don’t use the Forum much but it helped me before my lumpectomy and I think it’s good. A 
Hello Bellas
I managed to have an appointment with my GP this morning concerning the pelvic x-ray report which showed a congenital problem with the lowest vertebra which joins the pelvis. It appears I have an extra bone growing out and almost fusing with the pelvis itself. It is called “Bertolotti syndrome” and means that I cannot balance properly when I walk. The painful neuropathy in hands and toes has also prompted him to refer me to Orthopaedic and Physiotherapy departments at the hospital. I shall also have an x-ray on both hands as I am finding difficulty in doing even basic tasks. Three fingers on the right hand and a finger and thumb on the left are pretty useless and very bent!
To help with all the nerve pain he has prescribed gabapentin which I hope will give me some relief from the sickening pain I am experiencing now. Whether these symptoms will improve without Letrozole is difficult to know but I have been told to consult the breast team to decide future AI treatment or not when I near the end of my 12 week break.
I shall see if I can have an appointment with the oncologist so I can suggest changing to Tamoxifen, which will be less effective in my case, but might be better than nothing since it does not attack the bones (reputedly) and should not raise cholesterol. The only thing I have to bear in mind is that it can cause heart issues (blood clots and stroke). Having an ageing body is no joke when decisions have to be made!! I shall let you know in 6 weeks’ time what the team say and then I shall let you know my choice.
Keep well and enjoy your freedom from “L”!!
Best wishes and thank you for replying.