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 

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

Thank you. It was other side effects that improved not the arthritis. Never know with that anyway because it varies so much depending on weather etc as you will know. Unfortunately I don't have a useful relationship with the oncologist who took exception to me asking too many questions. My gp is at least very helpful and an excellent go between so I do discuss with him. I just find it very frustrating that it's always take their drugs or don't but definitely don't ask about alternatives.

Hi Sajom,

I had similar problems with my first consultant, who refused to test a lump which appeared in my other breast shortly after my lumpectomy. He wanted me to have radiotherapy, but I refused, saying that there was no point in treating one breast whilst ignoring the other. I am like you, I went with a pile of questions each time, which he objected to. He was a very pleasant gentleman, but I considered him to be inept and, his nurses were hopeless too.

We had a Mexican standoff for 11 months before he referred me to see the surgeon in charge of the area. When I saw him, he dressed me down saying that they couldn't have patients dictating what treatment they had. I pointed out that I would be quite happy to accept treatment, but that I thought that I had been sent to him for a second opinion.

He was immediately more at ease and, brought me down to an examination room. He found the lump immediately and did a mammogram, ultrasound and biopsy that day. He offered to take over my care and, I have never looked back. It has made such a difference to have a surgeon that I had faith in. His nurses were also extremely helpful and, I could always contact them when I was worried about anything. I discovered another lump in the first breast a year after I had my lumpectomy and it was great to be able to place my faith in this new surgeon to have a bilateral mastectomy.

Just go with your gut feeling. You need to know everything before you can agree to any sort of treatment and, if your consultant doesn't give you all the facts you need to decide, then you must ask questions. Going to another hospital adds another 3 hours on to my round trip to the hospital, but, I'm so glad that I did this. Would this be a possibility for you too?

Kind regards,

Jolamine xx

Hi Sajom,

I had similar problems with my first consultant, who refused to test a lump which appeared in my other breast shortly after my lumpectomy. He wanted me to have radiotherapy, but I refused, saying that there was no point in treating one breast whilst ignoring the other. I am like you, I went with a pile of questions each time, which he objected to. He was a very pleasant gentleman, but I considered him to be inept and, his nurses were hopeless too.

We had a Mexican standoff for 11 months before he referred me to see the surgeon in charge of the area. When I saw him, he dressed me down saying that they couldn't have patients dictating what treatment they had. I pointed out that I would be quite happy to accept treatment, but that I thought that I had been sent to him for a second opinion.

He was immediately more at ease and, brought me down to an examination room. He found the lump immediately and did a mammogram, ultrasound and biopsy that day. He offered to take over my care and, I have never looked back. It has made such a difference to have a surgeon that I had faith in. His nurses were also extremely helpful and, I could always contact them when I was worried about anything. I discovered another lump in the first breast a year after I had my lumpectomy and it was great to be able to place my faith in this new surgeon to have a bilateral mastectomy.

Just go with your gut feeling. You need to know everything before you can agree to any sort of treatment and, if your consultant doesn't give you all the facts you need to decide, then you must ask questions. Going to another hospital adds another 3 hours on to my round trip to the hospital, but, I'm so glad that I did this. Would this be a possibility for you too?

Kind regards,

Jolamine xx

Wow, that's awful. Why on earth shouldn't you have a say in your treatment.

It really saddens me that since I trained as a nurse in the 1970's the attitude to patients by some, very definitely not all, health staff hasn't improved at all. 
We are after all supposed to be giving informed consent but you have to fight for information and I was complaining at one point about people informing me that they were deciding on my care plan. With no reference to me! 

Hi Sajom,

I work in one of the professions associated to medicine. They always say that doctors and nurses make the worst patients - possibly because consultants feel that the little medical knowledge we have, puts them to the pin of their collars?

We hear so much about 'informed consent', but sadly, our experience is not uncommon.

Just stick to your guns!

Kind regards,

Jolamine xx

Thank you Jolamine, 

You've just given me more encouragement than I've had in the last 16 months.

Hi Sajom,

I am glad to hear that you've got a little encouragement from my reply. Have you asked your care team what percentage of gain you'll achieve by continuing with Letrozole? In my case it was only about 2%. By the sound of what you've already been through, you are a strong person. You'll need to retain this strength to fight your way through.

As I said before, just stick to your guns.

Kind regards,

Jolamine xx