glad I read this. I have been on anastrozole 3 years and complained of joint pain. Was given a month rest then put on letrozole. Oh my god been on it a month and I just want to lie down and die cannot take this pain any longer day and night. Constant headache shoulders hips knees feet hands. And I have a good pain threshold. Not taking it again 

Update my Doc took new blood test after I stopped taliking Letrozole. My liver enzymes had risen whilst on it, they went back to normal once I stopped taking it! . No more Letorzole for me, still have bone pain 

Hi Jolamine you say there are certain types of food you cannot eat could I ask you what the certain types of food are and why you cannot eat them also do you have any problems with getting a good nights sleep as I can’t seem to sleep for more than four hours on a night judpet 

Hi Judpet,

No cucumber, crisps, cheese, baked potato, fried food, alcohol, pastry, smoked fish, roast beef, sardines, plus a host of other food, which changes according to how I feel at the time.

You will possibly have noticed by the ridiculous time of some of my replies, that I am a night owl. I need to get up to the toilet every 2 hours and often am awake for quite a while before and after I go to the bathroom.

Kind regards,

Jolamine xx

Hi jolamine nice to speak to you you certainly are a night owl up at that time I have been awake since five feeling sick I was wondering if I need tablets for anxiety and depression as I worry about everything since been diagnosed with cancer I was wondering if you have been down that route also do you take tablets for nausea every day or just now and again judpet

Hi Judpet,

I took anti-nausea tablets all the time when I was taking Letrozole and, now take them as and when I need them. I really do need them every day, but am trying to reduce the number of tablets I am taking, as I am taking far too many.

I had terrible night sweats when I was taking Tamoxifen and, my breast care nurse suggested that some people benefit from a mild anti-depressant. I was reluctant to take these, but Clonidine didn't work for me, so I eventually succumbed. It made a tremendous difference and, I still use them (Venlafaxine). Most people with cancer are naturally depressed. Although I took this to reduce the sweats, this lifted my mood considerably.

Have a word with one of your care team or your GP and, see what they suggest.

Kind regards,

Jolamine xx

Hi jolamine I have recently started taking citolopram an anti depreeant and now feel worse than I did before taking them and wished I hadn’t.startedon them do you know anyone who has experienced taking this tablet and how they felt kind regards jud pet

Hi Judpet,

I do know people who have got on well with Citolopram, but also a few who haven't. There are other anti-depressants which might work better for you, so please get back to your care team to see about this. Also, be aware that you cannot just stop taking these tablets, you have to come off them gradually, or you will feel really awful.

I am so sorry to hear that you are having this trouble and hope that you can get it settled soon. I take Venlafaxine and have had no problem with it over the past 9 years.

Don't forget to let us know how you get on.

Kind regards,

Jolamine xx

Hi jolamine well tried citolopram couldnt cope with it so came off them was just wondering if when you were on letrozole did your side effects get worse over time or better I am thinking of changing to a different drug as I can’t cope with the sickness any more kind regards petjud

Hi Judpet,

We all react differently to drugs. The side-effects were obvious pretty quickly with me, but remember that I had already been taking Tamoxifen for the previous year. Other side-effects didn't manifest themselves until I was about 3 years into taking Letrozole. At that stage I had to have both knees replaced and had 5 eye operations throughout the following 2 years.

I am sorry to hear that the Citolopram didn't work for you. There are a number of different anti-depressants and, it's a case of finding one that works for you. You can also get an anti-nausea medication and a pain killer if needed. I hate taking tablets of any kind, but had to take all 3 types to get through the course.  Did you ask your care team about changing to another hormone therapy? It sounds as if this might be the best solution. Why not call your breast care nurse on Monday and discuss this?

I hope that you find something that works for you.

Kind regards,

Jolamine xx

Hi jolamine well I’ve changed from letrozole to anastrozol and have been on them a week now and still having the same side effects nausea sweating I think they must all have the same side effects no difference just hoping the longer I am them will the side effects get less hope so as I have had enough seriously thinking of stopping them altogether and getting some quality of life back kind regards judpet 

You need to give them 6 weeks for it to get out of your system.  I gave it a month & thought there's no difference, but it took about 6 weeks to notice the difference.

You need to give them 6 weeks for it to get out of your system.  I gave it a month & thought there's no difference, but it took about 6 weeks to notice the difference.

Hi clairebr did you just stop taking them altogether without permission from the consultant or did he tell you to. stop taking them did you also have bad side effects from the tablets kind regards judpet

Hi clairebr think I might have misread your last post sorry did you mean you changed from letrozole to anastrazol and it took six weeks for the letrozole to get out of your system if so are you ok with anastrozol now kind regards judpet

Actually I moved from Letrozole after one year, after complaining about pains & aches, then onto anastrozole for 3 or 4 years (not any better) then moved onto Tamoxifen.  It was only after 6-8 weeks on Tamoxifen that I was able to move again.  I did keep stopping anastrozole myself for a month at a time but because I was doing this the consultant recommended moving me onto tamoxifen which I wasn't keen on because of side effects friends had, but I've definitely been better on Tamoxifen.  I was not going to carry on with anastrozole.  Quality of life was more important than being crippled.

Thank you for your prompt reply could I ask when you stopped taking them fora month did you feel any better also my main side effect is nausea did you have that as well I can’t seem to get rid of it kind regards petjud 

I didn't see an improvement after a month.  I did have light nausea first thing in a morning or just after breakfast, but nothing major.  It was the pain & stiffness that I suffered from.

Hi Judpet,

I'm glad to hear that you have switched to Anastrozole. You are probably expecting too much too soon. As Claire has already said, the Letrozole will continue to be in your system for a few weeks still. It will also take a few weeks for the Anastrozole to start to take effect, so don't worry too much about not seeing an improvement yet.

I sincerely hope that you do see a result soon. If not, have another word with your oncologist and see what else s/he can suggest.

Kind regards,

Jolamine xx

I have read the sandoz brand of Letrozole is no longer being made, which would have been my first choice aside from Femara, which is so expensive, so hard to get prescribed. So have been looking at the ingredients of Teva and Accord letrozole as the ones my local pharmacies seem to have commonly. I want to choose one which will has less side effects, so decided to look at their ingredients. The ingredients are the same, except Teva has two extra E numbers Accord doesnt have. Tartrazine E102 yellow colouring, the side effects include anxiety, migraine, depression, blurred vision, itching, general weakness, hot sensations, a feeling of suffocation, purple skin patches, and sleep disturbances. It also has E132 which can raise blood pressure slightly. 

Accord only uses Iron yellow oxide E172, which doesnt seem to have any stated side effects. It also has Hypromellose E464, used as a binder or slow releasing agent, and also used in opthalmic solutions to increase eye lubrication. Teva doesnt have hypromellose.

So out of those two, i would prefer to take accord, and not have the added side effects of the 2 extra E numbers, especially the tartrazine E102.

Femara has the same ingredients as Accord, other than having a higher macrogol content of 800, to Accords 400. Macrogol is used for constipation.

It was interesting comparing the ingredients.

I now take turmeric for joint pain, which seems to be working. I also take sea buckthorn capsules and since taking these I don't feel so anxious or low. Might just be a coincidence. 

I'm finding all this very interesting. I started on Letrozole about 9 months ago and initially thought the side effects weren't too bad. I already have arthritis so the increased pain was hard to definitively blame on the drug. However, as time has gone on the spread of joint pain has got worse and recently I started to bleed. I took a week off the drug and everything started to improve. Changed from Teva brand to a different one but all the side effects are back with a vengeance. Oncologist is insisting on every conceivable test to try to find some other reason for the problems but I have chosen to stop again and the effects are lessening. I'm still going through the tests because at some point they will have to admit it's the drug and I think it's only fair for other people that this can't be covered up. 
I'm contemplating whether to try a different drug if they offer it, which I think my gp will back me up with, but I honestly don't know. I feel I lost last year due to the attempts to kill me with the chemo and if I only have a short time left I'm really not prepared to waste it struggling from one set of loathsome side effects to the next.

Hi Sajom,

Welcome to our forum. I am sorry to hear about the problems that you are experiencing with Letrozole. I have had 2 bouts of breast cancer. The first was 11 years ago and the second was 10.  I initially had a lumpectomy, followed by Tamoxifen. When I had a new primary in the same breast the following year, I had a double mastectomy, followed by Letrozole for 6 years.
Like you, I was already arthritic, so it was hard to say what had caused it to get worse. I eventually had to have bilateral knee replacements and 5 eye operations. I understand that, even when you stop taking this, it takes about 4 weeks for it to get out of your system, so I wonder whether there were in fact any changes, when you found things so much better when only off the drug for 1 week?  It is all too easy for us to convince ourselves that things are much improved, just because we expect them to be.

Have you discussed the fact that you are coming off the drug sometimes with your oncologist or consultant? It is always worth keeping them abreast of what you are doing. There are other drugs that you could take, but most of them have side-effects. Have a chat with your care team and see what they suggest.

Kind regards,

Jolamine XX