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Have been taking Femara for a year now.Took half a tablet to start with , then the correct dose after 3months..\in the last few weeks I notice quite a painful right knee, but am going to persever with them, so as to stop the cancer from spreading to other organs. I feel depressed , but tears come from nowhere in certain situations !! never used to be like that ! Keep taking them ladies , and live each day ..Carpe Deum etc etc ...Maggie
Just went to pick up my prescription and I've got another different generic, they did promise me I could keep to Teva but obviously not.
This time its Arrow,gone through the list of ingredients and it includes hypromellose which is not in Femara, Sandoz and Teva.
I'm going to get my GP to request that I am given either Sandoz or Teva on the prescription. I am happy to have a generic but at least one that I am okay on.
I just wish it would stop raining, I'm hoping that this means we will get a nice summer. Somehow the sun just makes it all seem a bit better.
A friend of mine is taking Letrozole, we started taking it within a week of each other, and she has no side effects at all. When I told her what the consultant had said to me her reply was does that mean the treatment is not working for me.
I did my best to reassure her that everyone is different, another friend of mine also suffers from aching joints but not as badly as myself, what I need is a 2 weeks holiday lying on a tropical beach in the hot sunshine.
I saw my Onc last Wednesday for my yearly checkup and I told him that some ladies are being told that the side effects that they are experiencing show that the AIs are working. Whilst I don't have the aches and pains that some ladies have so where did that leave me?
I have never seen him so annoyed and my husband looked at me to say "why did you bring that one up" My Onc said that he was shocked that anyone in the medical profession should say this and that they shouldn't be in their jobs basically.
The side effects you are suffering might go away or lessen a little, you don't know neither does your Onc. But then after he has said that to you and they do stop will you worry that the drug has stopped working.
We have to trust these people but sometimes I wonder.
I went for my six monthly appointment last week, and asked the consultant about all the aches and pains and stiffness - was it caused by the letrozole - he said yes probably and it was a good sign that the treatment was working. I asked will I be in pain for the next four years and the answer I got was 'yes you will, take painkillers. It is hard to keep a smile on your face knowing that.
I suppose he was being honest - brutally so.
keep taking the tablets.
Great to hear from you and the benefits which obviously far outweigh the se's. A good reason to keep taking the pills!
Hi Wandy and fellow sufferers,
My side effects are the same as yours. I have regular aromatherapy which I find helps ease the stiffness. I have to avoid certain oils such as lavendar and geranium which can be oestrogen stilmulating so my aromatherapist always checks in her reference book if a particular oil is suitable. As for my emotional state, I cry over the silliest thing.
Letrozole has proved to be a very effective drug for me. I have been on the drug for 10 years and am still in remission after being diagnosed with a secondary in a distant lymph node in 2002 and after being given 2 years to live. When I first went on the drug, I was told that I would only be on it for 5 years but because of the secondary diagnosis and the drugs effectiveness, the oncologist says I will now be kept on it until it ceases to work or the side effects outweigh the benefits.
So ladies, keep taking letrozole and I hope it proves to be as effective for you as it has been for me.
Haven't anything further to add to my previous posts except that its all still the same. Its just nice to know I'm not alone!!...
hi I started on letrozole 16 months ago and aches go on for me too. Have been considering asking for change at my next appointment but reading this thread its given me a boost to carry on knowing im not alone.
In the morning am like an old woman clinging to the furnature to get to the bathroom!
Worry most about the number of pain killers i take and what it is doing to me in the long term as taking paracetamol, ibuprofen and also take diclofenac when i go to bed as find it hurts more when lying down. Also really bad aches in hands and feet can only describe as sickly pain. Take devils claw supplement which i think helps a bit
good luck everyone
Hi Everyone I was on tomoxifen for five years then transferred to femara which I have now been taking for 18 mths. After three months on this drug I had trouble walking down the stairs due to pain in my left foot the good news is it lasted a few months then went! However last August I suddenly developed pain and stiffness in my upper right arm when using it in certain postions-this is also seen at the elbow and shoulder. X rays found nothing. Has anyone else had this problem-only my physio therapist insists this is not femara nor as my oncologist suggests op damadge. I too find the latter hard to comprehend as my op was nearly seven years ago unless my arm has ceased up as I did have an mx with full lymph clearence.
For others on femara I too have hot flushes, disturbed sleep, can be a bit emotional, but myself I found my SE lessened the longer I was on the drug. All the best to you all JL
I have been taking Femera/Letrozole since last July and my goodness my body does ache, knees, shoulders, hips and my hands are really stiff. It hurts to do ordinary daily tasks, no one seems to believe me when I say how my body aches, oh they say but you look so well. I cant believe I have another 4 years of this, but if it keeps the cancer at bay.
I began taking Letrozole in January and couldn't believe how stiff I felt. I initially thought it was due to surgery I had in December (oophorectomy) - then I realized it was the SEs. The hot flashes are still present but I think are decreasing. I've started taking Sage supplement for this and I believe it is helping.
Just began taking Glucosamine for the stiffness/pain. Here's hoping it works!
Know what you mean Heather about not being the woman you used to be and trying to find and feel comfortable with the new one!!! At least we can get support here!
Jane???!!!! When did you find this out?? How awful for you? Are you still working full tilt? Why have you not shared this with us May girls??!!Hope you get something resolved soon!
GIjane,I had a prolapsed womb a year before i got diagnosed with bc,ended up having a hysterectomy.I can sympathise with you,Alot of back ache, very uncomfortable down below,never quite new when i wanted to pass urine,found sitting or standing too long very uncomfortable,they gave me a ring to insert at one stage,hated it with a passion.Poor you!!
Out of the two operations i found hysterectomy worse than having my breast off.But so worth it,felt so much better after.
After having 2 years of crap iam hoping this year is a good year for me.Heather x
For me. The stiffness has died down and the flushes bearable. However, the lower eostrogen levels have caused by womb to prolapse, which I'm very fed up about. Not been able to get an appt yet, but I really don't want another op and several more months off sick 😞
Hi Wandy,I flush awful throughout the night,don't sleep too good,but never have since being diagnosed.
I too get very down,feel like iam drowning sometimes.I think everyone else is moving on,but probably feeling the same as me.
Iam not the woman i once was thats for sure..just need to find the new me..
It seems we are all different. My joint pain is as bad as ever...some days its appalling and I swim 1 kilometre x4 times a week, I dog walk for an hour every day and I try and do yoga, very gently and just stretching at the mo, (got a DVD) and have realised how very stiff I am!! Also taking Celaritis, wondering whether to take cod liver oil as well??....
Think I will just persist, cos I believe its doing me good,(in cancer terms) but I do feel quite down about it at times with the prospect of years ahead of this pain...I guess one blessing is that the flushing is not toooooo bad. I am very emotional tho and weep at everything!! Not sure if thats the drug,fatigue after just getting through the last year or depression because I feel like a mutilated bearded excuse for a woman!!
Hey ho!!....Nice to know we are not alone tho!
I have been on Letrozole now since December,1st Packet was ok,but then on 2nd, OMG i had severe joint pain especially in my knees and feet,got so bad i was walking with a permanent limp.I started to take 2 Glustomine,chondroitin and calcium tabs and 1 cod liver oil tab daily.I also started a yoga and pilates class.Now i don't know whether my SEs have just settled down on there own..or taking the supplements..or stretching classes..but i now (Touch wood) only have slight stiffness.Hope this is helpfull x
Hi there. I'm really down about the side effects of letrozole. My doc has prescribes 2 months of anti inflammatory (naproxen ) and says the body will settle down an adjust. These help relieve the severe pain in feet and hands. The pain was so bad it made me cry. It felt like someone had dropped a slab of concrete on my feet.!!! The naproxen works fine but I don't like the idea of taking a tab to relieve side effects of another and it doesn't take the severe stiffness away. Does anyone know if this go away in time? Or does one have to live with it? Can cope with the hot flushes but stiffnes is a burden - I find I have to walk backwards down the stairs first thing in the morning. Trying hard not to be depressed and finding this site makes me relieved that I'm not alone. X
Hi Ladies. I have been on Letrozole since last Sept. I like a lot of you have aches and pains that I never had before, I also have really bad tendonitis in my heels, wrist & neck. Some days are worse than others. Consultant said I could go back to taking Tamoxifen but I have decided to stick with the Letrozole.I keep saying to myself that Im on a 5 year journey and need to stick with the meds until Im out the other side. Hope this is helpful to some of you.
My SE have not been too bad - trigger finger which has got a bit better. However it is early days, around 3 months and I am terrified of losing my hair. I know this is vain but along with weight gain, hairy face and losing a lump of breast, I feel defeminised, if that is a word. Lately, I could cry at the drop of a hat and lost the bread the other day and found it in the dishwasher, so my brain is collapsing. Hot weather and RADS do not help. arrrggg!
I took letrozole for 18 months and was changed to anastrozole 6 months ago.
Letrozole gave me the most appalling flushes, and even worse - creeping brain fade!!! So the clinic changed me over, and SUCCESS - flushes very rare and more of a 'glow', brain now operates properly. Only SE is a bit of joint pain but as long as I stay mobile (walking the dogs every day!) it's barely noticeable.
All the aromatase inhibitors do the same job in so far as they prevent recurrence, so asking your clinic for a change may well be helpful.
Apparently everyone reacts a bit differently to these drugs, it's very individual.
hope this helps
I am going to stick with the Letrozole too, it does help to know that I am not the only one experiencing these side effects.
I started Letrozole (Femara) in October last year and within 48 hours I had the most horrendous joint pains everywhere, ankles, knees, hips elbows, shoulders and fingers. I am taking Celaritis (similar to glucosamine) and I think things have eased a bit but I still have pain and creak and struggle to get vertical after sitting or lying a bit like a 100 year old woman!! I am also getting flushes but they too are manageable. I don't feel depressed, although have noticed that I am more emotional, a soppy advert can make me weep at the drop of a hat!!
I am going to stick with it because I believe living with the effects of the drug are a better outcome than dealing with recurrance, which hopefully this drug is helping to keep away!
Hope this helps
I have been on Femera (now Letrozole for 8 months and have aching joints, especially my knees,shoulders, hands and hips. I am now experiencing really hot flushes and night sweats. As anyone else been experiencing low moods since taking this medication.
I've been on Femara for over 3 years. Some side effects did show up after a few months(painful and stiff fingers, back and feet) but disappeared a few months later. Since then I've been just fine. No SE at all.
I was on Tamoxifen as am pre menopausal but unfortunately got a clot so was switched to letrazole with Zoladex, i think the flushes may be from Zoladex as it so quickly tossed me into "clinical" menopause 😞
I was lucky when on Tamoxifen as didnt have any se's at all, am never quite sure what causes what now especially as every time i get letrazole its a different brand name.
Funny - I was told the SE's would wear off - and that's been my experience! Started Femara (Letrazole now) in September, and was really stiff after a few weeks, and joining the synchronised flushing (especially at night)... Now, however, my joints are fine and the flushes come and go, as they used to before.... Sadly, alcohol makes them worse! (so sometimes I just put up with them!!!!)
I can back up what Sarah says about the side effects taking a while to kick in. I moved on to femara after tamoxifen, which had also given me joint pain. The immediate effect was great as all the tamoxifen aches disappeared and I was really pleased, but then after that lovely honeymoon period the aches came back. I too used glucosamine and chondroitin.
Best wishes to all,
I started Femara in October last year & side effects kicked in after about 3 months or so.
My main side effects are night time flushes ( increasing) & joint stiffness, legs & shoulders mainly.
I was advised to take glucosamine from the start along with Omega 3 but sadly didnt but have now bought some, i do wonder if things would be slightly easier if i had taken the advice when given.
Good morning Kit20
I just wonder how long it took for your side effects to appear after you started Femara. I have been on the medication for 4 weeks now and had no signs of any side effects so far.
I am taking several supplements to help deal with the joint pain/stiffness that is a side effect of femera. I take 3 fish oil capsules a day, 2 calcium, 3 glucosamine and chondroitin as well as antioxidants and apart from the first two weeks so far the joint pain, although present is minimal. The worst is my fingers. I cannot say for sure that this will work for you, just give it a try, and who knows.