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Letrozole Side Effects

Lej
Member

Re: Letrozole Side Effects

Hi all, l have been on letrozole for a year now and at first suffered few side effects apart from being a little achy and being a bit more tired. I then had a lumpectomy in July and and four weeks of radiotherapy in October/November. I already had a few hot flushes after coming off HRT and also suffered from insomnia however in the last few months both have got worse. I am just wondering if switchingredients to another brand of letrozole might help. I am currently on Accord. Has anyone got any advice or comments?


Flint
Member

Re: Letrozole Side Effects

Yes you should but speak with your GP about it, You should also have had a baseline Dexa scan.

Beware  that calcium supplements can interfere with other meds so you need to checkwhen best to take them . it doesn't interfere with letrozole.

 

Helzie
Member

Re: Letrozole Side Effects

Thanks for your reply. No, scan's  never been mentioned. Only read about it recently. Will mention it to BCN on Wednesday.

catokitty
Member

Re: Letrozole Side Effects

Have you had a dexa bone scan to show up if you have any bone thinning?   I had adcal prescribed after mine showed up slight thinning.  My pharmacist is useless in terms of ordering a specific brand for me and the other chemist where I live is just the same.  

Helzie
Member

Re: Letrozole Side Effects

I started taking it at end of October and apart from tiredness (which could also be put down to stress of condition) and very minor joint pain if sitting down for a while, I'm fine with it. No apparent hair loss. I did continue with the brand prescribed at the hospital (Accord) and told my local pharmacist to order same and keep  some in stock! Wonder if I should be taking supplements to avoid osteoporosis, though?

catokitty
Member

Re: Letrozole Side Effects

I started with aching joints and bones especially wrists, shins and ankles after about six weeks and they wore off after about three months or so and I haven't had any problems since.  I occasionally feel a bit sick in the morning if I take the tablet on an empty stomach if I have to rush out first thing bit otherwise I am fine. When the aches were at their worst I took paracetamol which eased them a lot.  There is one brand which brings the aches back on, Activis, but all other brands are fine for me.   Good luck with it.  I think lots of people do take it without problems.

 

Sue C
Community Champion

Re: Letrozole Side Effects

Hi Blacky

You probably won't have any side effects straight away, as it takes about 6 weeks to kick in. I'm getting some stiffness in joints after a couple of months, and now taking cod liver oil which is helping.

Happyboobs2
Member

Re: Letrozole Side Effects

Hi, I just want to say that you will find posts on here of ladies with lots of different side effects from Letrozole and the other drugs but I have noticed lately that any side effects I have had seem to have settled down and I am not too bad at all.

I have been on it for 18 months .

I would be interested to hear if anyone else has found this to be the case.

 

Blacky
Member

Re: Letrozole Side Effects

I have aches and pains suddenly, where none have been before, but not in the joints yet, so was just wondering! Thanks for your input.

Blacky
Member

Re: Letrozole Side Effects

When do the side effects of Letrozole start. I have been taking them for just over a fortnight?

tixi
Member

Re: Letrozole Side Effects

Dear Sue,

I  am 58 years old with normal weight and I have been on Tamoxifen for about 18 months.  The side effects knocked me a bit initially - with joint pains and weight gain. I gained about 4,5kg in 2 months. I tackled this by increasing my physical activity to 1 hour per day and removing all sugar and glucose from my diet.  I have regained my normal wieght and I have managed to clear all my joint pains.  I feel very well and my energy levels are good too.  I am still slighty hot at night which seems to be related to how many coffees I have had during the day..  Wine also adds to the hot flushes and I have tried to cut down on my wine consumption.

 

I hope that this is helpful..

Elef
Member

Re: Letrozole Side Effects

I have been on Letrozole for 6 months with no problems at all. I take it at night. Good luck!
Sue C
Community Champion

Re: Letrozole Side Effects

Also I've been told that it takes about 6 weeks to kick in, so you may not notice anything straight away. Then if you do experience anything, it peaks at about 3 months. So after that, it should settle and ( I'm hoping )doesn't get any worse.

Let you know whether that's true or not!

Em 67
Member

Re: Letrozole Side Effects

Sorry that was meant to say tired not tied! Using ancient I pad and unless I really slam the keys only about one letter in three comes out!!
Em 67
Member

Re: Letrozole Side Effects

Hi bluelayla

ive been on Letrozole for a month now and have felt a bit more tied with some aching joints but manageable generally.  I take it at night now which is better as am less achy in the day. Do have fluctuations in temperature but again these are manageable. I think the side effects lessen as time goes on so I am hopeful. I keep thinking that it's keeping me safe while I wait for surgery so can put up with a bit of discomfort! Good luck. Emma xx

Blueleyla
Member

Re: Letrozole Side Effects

Hi Sue C and poppyj

 

Thanks for the words of encouragement. I know that it will help to keep the cancer away and am hoping that thinking about it is worse than actually taking them.  I plan to start on Monday and will make a note of how I feel so that I can monitor the side effects and will then have something constructive to go back to the doctor or specialist.  That's a great idea and one I probably wouldn't have thought of so my thanks.

 

Will keep you posted and try to be optimistic, not something I am naturally good at!

Sue C
Community Champion

Re: Letrozole Side Effects

Hi blueleyla

I've been on letrozole for about 3 months now and although there are side effects (for me mainly achy joints ) its not so bad. It's definitely manageable. Try and remember that its keeping that horrible c away xx

poppyj
Member

Re: Letrozole Side Effects

Hello Blueleyla

You may not have any, or all the side effects mentioned. Suggest you persevere with the Letrozole for a few months and if you do have symptoms mentioned on the leaflet, ask your specialist or GP to change you to a different brand as they do vary despite all being called Letozole. I would try keeping a daily diary and note down how you feel each day just to monitor how they are affecting you.

Blueleyla
Member

Re: Letrozole Side Effects

Hi Everyone

I had a lumpectomy at the end of December and went for my check up yesterday which went well.  I now have Letrozole and have read the side effects leaflet and the posts on this site and I am now really anxious about taking them. I know they are meant to help but the side effects seems horrendous. Has anyone taken them and been ok? Could really do with hearing any positive comments

Beti-2016
Member

Re: Letrozole Side Effects

My 87 year old mother has been on Hormone Therapy Femara since August 2016 since she was diagnosed with stage 2 CA Breast. She is an Angina patient too. 

 

Initially she faced severe diarrhea and hot flashes but that has got sorted now. Her major issue is exteme weakness ie where she was able to walk for half an hour morning and evening now she can push herself to only 10 minutes. She has developed a tremor too in her right hand, Got her complete thyroid profile done too but that was normal. Her BMD Dexa was pretty good for her age but due to her Angina her Calcium supplement was reduced and she was also advised not to take her ibandronate. So her spine base pain is excruciating when she has to get up after sitting or even when she has to take a turn while sleeping.

 

 

Sue H-S
Community Champion

Re: Letrozole Side Effects

Hi all

Letrozole side effects - I have a little story to tell, which may be of help to some.

Although, I guess it is not side effect clear - it does seem to depend on whose manufacturers Letrozole suits you best. Although the active ingredient is the same for all - the stuff they use to make up the actual tablet varies. And sometimes the side effects can be appearing or be made worse because of that.

I started with the Teva brand of Letrozole in February, before my op, chemo and rads. No problems...

Since October back on them. Initially on the Teva brand - again no issues - then they ran out of that one and I was given the Actavis brand. I became very depressed and had the most awful joint pains, starting to move around like a really old lady. So I researched......and it does appear that certain brands suit us better than others. After going back to the Teva brand - depression gone and joint pains gone.....

The Teva brand seems to be best for me - for others other brands may be best. So if you and your GP are up for it, it may be worth experimenting to find the brand, which gives you the least side effects.

Hugs

Sue x 

 

Sue D
Member

Re: Letrozole Side Effects

Hi Ann-m, thanks for answering, that is very useful. I am slim and don't want to gain any weigh if I can help it. X

ann-m
Community Champion

Re: Letrozole Side Effects

hi Sue D,
I did not need chemo & have the option of going onto AIs, but agreed with my oncologist to stay on tamoxifen. Since starting tamox 7 months ago, my weight has remained stable. I do watch what I eat, but not have made any significant dietary changes & have increased my activity levels.
ann x
Sue D
Member

Re: Letrozole Side Effects

I have been on Letrozole for just over a year and have suffered with aches and pains and hot flushes. I take 1000 mg of Evening Primrose Oil to help with the flushes and plenty of exercise, mostly walking, for the aches and pains. These remedies have helped. My main problem is that my hair didn't really grow back after chemo, my Onc thinks it's the Letrozole stopping the growth and says I can change to either exemestene or Tamoxifen to see if it will kick start the follIcles.. I would like to try Tamoxifen but hear that there is a lot of weight gain with it, I have osteoarthritis in my knees so dont want to put on weight. However, I feel so awful with so little hair that I might take that risk and just stop eating. Is anyone on Tamoxifen and managing to stay slim? Thanks. Sue

Sue C
Community Champion

Re: Letrozole Side Effects

Hi all

After 7 weeks on letrozole ( and zoladex ), starting to get very achy joints and muscles. I knew this was coming, but what is the best way of dealing with it? I'd like to think that exercise would help, but after walking this afternoon, I feel worse! Any suggestions out there??

Sue xx

ann-m
Community Champion

Re: Letrozole Side Effects

please remember, Leaa, that, understandably, those having problems will report it & it is not necessarily representative of experiences generally. I also found that reading about problems increased my anxiety before starting hormone treatment, so see how you go, it may well be ok.
ann x
Leaakeel
Member

Re: Letrozole Side Effects

I have just started on letrozole this week after finishing my chemo 3 weeks ago. Reading this forum is worrying, side effects sound worse than chemo. Will take your advice and start taking them at night. X
fyefye
Member

Re: Letrozole Side Effects

Hi ,

I've been taking Letrozole for 2 years since diagnosis in November  2014 and awaiting a mastectomy in Feb last year.

My surgeon did warn me that I would experience symptoms of the menopause. I didn't worry because I had only had mild forgetfulness during my  actual menopause.

I was not prepared for hot flushes, joint pain, dry skin, hair loss, sleeplessness and loss of appetite,

My surgeon recommended expensive thick amd thin shampoo and conditioner on the internet, which didn;t work.

It wasonly when a new doctor asked if I knew I had serroboeic dermititis.?  No! but immediately the dry skin and itchy scalp were sorted. I put a upside down sink strainer in my shower drain to stop hair from blocking it,

I am awaiting a bone density scan results, but calcium tablets amd hay fever Cetrizine tablets daily, help with the joint pain and rashes.

The only other tip is to take the Letrozole at bedtime so some of the rubbish side effects take place as you sleep.

Sue C
Community Champion

Re: Letrozole Side Effects

Hi Lorna

Have only been on letrozole for 5 weeks but have been having stiff and sore neck too. Thought I'd slept funny! 

Just a suggestion.....I also had a lot of migraines and considered beta blockers but wasn't keen. So my dr suggested aspirin. I take a small one(75mg) once a day and have done so for about a year and a half. In that time have only had 3 migraines, whereas before was getting on average once a month. 

Hope this helps x

Lorna
Member

Re: Letrozole Side Effects

Hi I've been on letrozole from April  ,I was on HRT for the menaporse  plus anti depression  tablets and beterblockers for migraine  I've stop taking HRT ,, I'm 52 but feel 90, my body feels like I've been hit by a bus , all my joints  hurt fingers  swell ankles ache back ache hot flushes feel tiered  all the time can't sleep at night now have really bad pains in my neck hurts to turn my head to the side very stiff and feel like my bones are cracking as well as vertigo witch it had before but it's a lot worse now  I could go on and on  just wondering if this is what everyone else feels 

sandylo
Member

Re: Letrozole Side Effects

Get citirizine tablets for the itching you can buy them at the supemarkets my gp put me on them I take one a day
sandylo
Member

Re: Letrozole Side Effects

Me too
sandylo
Member

Re: Letrozole Side Effects

Read my comment above
sandylo
Member

Re: Letrozole Side Effects

I have been on all three arimidex emerstane and letrozole for last three years and have had in all six years of total agony I only go out if I have to usually food shopping as I live on my own and couldn't be without my car it's now my legs all my joints are full of pain 24/7 and letrozole caused trigger finger which doesn't bother me but the pains are horrific I was hoping originally to be on them for five years and was counting the days down but now it's ten years Ive a very strong pain threshold bur cant stand much more
Flint
Member

Re: Letrozole Side Effects

Hello Kathleen54

 

I think what you are describing is known as formication. I had it for a while post menopause then it stopped,

I hope yours will soon.

 

Also, if your skin is only slightly dry it can itch severely, One of the best moisturisers for atopic skin conditions is Doublebase and it is available on prescription if your doctor thinks it an appropriate.

 

Best wishes

 

 

georazolman
Member

Re: Letrozole Side Effects

I have been taking Letrozole for 4 years now and I wanted to ask does any one have severe joint pain all over my body. It started in my lower back now I hurt every place on my body and I have also gained so much weight in just the stomach area.  I have terrible hot flashes and it is terrible to be outside in the heat. How long do I have to be own this drug and is there any help for the side effects.

Thank You,

Geora Zolman

pat oxley
Member

Re: Letrozole Side Effects

me too.

pat oxley
Member

Re: Letrozole Side Effects

was nice to now someone else comeing off letrozole for three weeks,i am on day one.hope day five is good for me.

Guest user
Not applicable

Re: Letrozole Side Effects

Has anyone experienced breast pain whilst on Letrozole? I've suddenly developed breast pain in one breast and not my affected breast. A bit worrying really.
sandylo
Member

Re: Letrozole Side Effects

i too have terrible pain at base of spine
sandylo
Member

Re: Letrozole Side Effects

hi there i started on arimidex three years ago and was in total agony then put on exemerstane which was slightly better then six weeks ago put on letrozole i too have severe pain at the base of the spine im fine when sitting but a soon a i getup its terrible and keeps me awake at night i have another two years to go but have had no quality of life as cant walk far

Guest user
Not applicable

Re: Letrozole Side Effects

Hi all, I used to be on Arimidex, but the side effects were dreadful, really affected my quality of life. Since I now have secondaries I have been started on Letrozole - been on them for 18 months. There has been some weight gain, some hair loss - on the crown and front of hairline, and aches and pains. I also have quite itchy skin and high cholesterol l (not caused by diet, and up til now normal) But nothing as bad as on Arimidex. I take glucosamine and a Dvit/calcium supplement as well as having 4 weekly denosumab injections. In the scheme of things the Letrozole is holding my secondaries at bay for the moment, so I think I will have to stick with them.

Good luck to all of you . Hope you can all find a way of controlling the unpleasant side effects.
Doz1949
Member

Re: Letrozole Side Effects

Hi girls and Mr 🙂
i,ve been on Letrozole 2 and a half yrs, no hair loss just a bit dry, a dry mouth a bit of weight gain around the middle too many hot flushes for comfort and yes lots of aches and pains I only notice it for a few mins when I get up.. From bed or chair, I,m a Nurse so very little sitting down on a 12 hr shift I think we all get a few unpleasant side effects from what I call my poison (Letrozole) but in the greater scheme of things I do think its doing its job and for that I am thankful but.... Not always grateful!
I wish you all well with your treatments it's not a pleasant journey but we are still around to moan about it and I often do 😉
Best wishes to everyone xx
Guest user
Not applicable

Re: Letrozole Side Effects

Hi Everyone. I am looking to see if anyone can give me any advice re side effects of Letrozole. I have been taking it for 3 weeks now and have terrible itchy crawling skin which is driving me mad. I do not take any other medication so can only put it down to Letrozole.
thanks x
wintersocks
Member

Re: Letrozole Side Effects

Hi GerryC,

I have posted a reply to you once but it has disapperared!

Here goes again.
The treatment I am on is: Vit D and calcium combined. This is through my GP as recommended by my surgeon.
I had a DEXA scan last year and am to have another next year (and every 2 years following that)
my surgeon strongly recommended exercise, particularly weight bearing.
Do you have pain from the oeteopenia? mine is described as 'marginal'.
WS

Guest user
Not applicable

Re: Letrozole Side Effects

Hi winter socks,

i am staring an aromase inhibitor soon and also have osteopenia in my spine.already on zoladex.are you on any treatment for osteopenia?
ponsmuir
Member

Re: Letrozole Side Effects

Mejane and Vercors,
in the scheme of things, weight gain or loss is the least of our problems I think. Over Christmas /New Year I was on very strong steroids to combat the spinal cord compression and I had an enormous appetite for fatty and junk food. Totally out of character but I had to give in. Now the gained weight is falling away.
maybe another treatment in future will make me swing in another direction. Bit as long as things are becoming more stable for me, I shall out up with it. And rejoice in trousers with elasticated waistbands.
at the moment I crave protein, lean meat and fish. A friend with a medical background tells me that my spine is remineralising with the Zometa treatment and my body needs this kind of food. What a roller coaster!
vercors
Member

Re: Letrozole Side Effects

Hi Mejane,
I haven't been suffering form hairloss with letrozole. I did put on 7 kilos on Tamoxifen that I managed to shift since I have been on Letrozole. Unlike Ponsmuir, I did not lose my appetite, I had to be careful. Still a few that needs to go but that is another story.
My onc had told me that I should forget about weight loss while on Tamoxifen, so I may have used this excuse to eat more...
As Ponsmuir said, I would rather that my onc tells me what to take, rather than having to chose based on side effects. Tamoxifen only worked for 3 years for me, hence me switching to Letrozole.

ponsmuir
Member

Re: Letrozole Side Effects

Mejane
i find I have a small amount of hair loss with Letrozole but you wouldn't notice from my head of hair. It's just when I brush my hair, more comes away than before. I have lost weight with Letrozole as my appetite has reduced considerably and at times I feel slightly nauseous.
My main SE's are stiffness and sore bones which seem less now after 4 months. But Letrozole is proving effective at the moment and Paracetemol helps relieve these SE's.
I would find it difficult to choose a drug even after researching it on the Internet - SE's vary so much and the Onc has seen so many more cases/has access to research results etc. He can also switch treatment if you find it difficult to tolerate a certain drug.
Mejane
Member

Re: Letrozole Side Effects

Has anyone experienced hair thinning or hair loss while on Letrozole? I will be starting rads in about 3/4 weeks then Horomne tablets. My ONC has suggested Letrozole, although Tamoxofin has also been discussed. I have been reading about SE's of both and whilst I know they may not apply to me, it would be really helpful to know what others a bit ahead of me have experienced.
I am also concerned about the potential for weight gain on Tamoxofin and the potential for increased risk of Osteoparosis on Letrozole (my mother and her sisters have it) so am dithering about which drug to go for. I am aware each of these drugs are from a different group of ER inhibitors and have researched both on the MacMillan site, but the a possible SE's do worry me. I have put on about half a stone on chemo and the thought of putting on any more weight over the 5 years I have to take these tablets is worrying me.
Can anyone offer any pearls of wisdom? If you are a bit further down the line than I am I would really appreciate any advice you have with regard to the SE's you may be experiencing on either of these drugs. Many thanks. MJx