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letrozole se major joint pain/ help!

36 REPLIES 36
MMR
Member

Re: letrozole se major joint pain/ help!

Scillygirl.....wish I knew what would totally eliminate all of your pain.  I take hot showers, Tylenol, move slowly when I first get up.  The Letrozole has settled in my joints, especially my right hand.  It now looks like a claw, and I am right handed, so movement is painful and I do not trust my hand to hold anything, open containers, etc.  We have so much technology available, but the treatment is barbaric...your word was perfect.  They give with one hand and take with the other...if this treatment doesn’t kill you, you will be awesome!  I started the hormone blocker in February 2018, and ibrance chemo pill in March 2018.  At some point something will need to change because I cannot imagine taking the blocker forever.  I have read and heard of so many women stopping the hormone blocker because it ruined quality of life.  It must be daunting for young women to consider.  I am older, so I rest, work only one day a week, and do not have children to look after.  Will keep you in my thoughts and wish you well with radiation therapy.

Member

Re: letrozole se major joint pain/ help!

I am in AGONY! I have been on Letrozole for 3 weeks and I can’t walk. The pain in my right foot is unbearable. I start radiotherapy on 27th December so not only will I be unable to walk but they’ll set fire to my breast. I hope during my daughter’s lifetime they will find another way of controlling the spread of breast cancer without subjecting us to utter torture., it’s barbaric! The letrozole continues for 10 years! I’m not surprised women can’t tolerate it. Does anyone have any suggestions of how to ease the pain so I can put one foot in front of another? I’d be so very grateful.
MMR
Member

Re: letrozole se major joint pain/ help!

Hi Annie and all participants.....thank you for the good advice about changing brands.  It is strange to be so creaky.  I wonder how such a tiny little pill can cause so much damage?  I had great news regarding my most recent PET scan.  All of my "lights" are turned off and the random bad cells that were all over prior scans are no longer there.  I am blessed.  But, since it looks like I am not actively dying, I must clean up my food and stop eating junk and have real food.  I don't have an appetite for anything good for me.  Must do better.  The sugar is my comfort.


@Anniej wrote:

Hi, I've had 4 different brands of Letrozole and my preferred one is Teva. My Onco, lead nurse and pharmacist all advised me changing brands to get one that agreed with me. Apparently it's the fillers and the binders that cause the problem with joints. I believe the Cipla brand is to be avoided at all costs. Tai chi is my answer to joint pain. Without it I would be moving like a marionette!  X


 

Community Champion

Re: letrozole se major joint pain/ help!

Hi, I've had 4 different brands of Letrozole and my preferred one is Teva. My Onco, lead nurse and pharmacist all advised me changing brands to get one that agreed with me. Apparently it's the fillers and the binders that cause the problem with joints. I believe the Cipla brand is to be avoided at all costs. Tai chi is my answer to joint pain. Without it I would be moving like a marionette!  X

Member

Re: letrozole se major joint pain/ help!

I’m new to this site - after reading all your comments I finally feel vindicated in my belief the Leterozole is the root cause of my shoulder pain and trapped brachial nerve. I expressed this thought at my last clinical checkup and it was dismissed by the registrar. I had an MRI last week and await the results. I’ve been on L for 2 years now and the pain really kicked in after 16 months on L and 14 months after radiotherapy. I feel more confident in discussing my thoughts with my Consultant, now. To what end, I know not
MMR
Member

Re: letrozole se major joint pain/ help!

Hello, Susan 1962...and all on this site....when I read back through all of the posts, we seem to be in the same boat.  I try to keep my spirits up and not be a "wienie", but the process of this disease is exhausting.  Next week I have my 4th PET scan, and I will be interested to hear how the tumors are responding.  I am never having a mammogram again. What is the worst that can happen?  I already have Stage 4 metastatic breast cancer.  Am having my last pelvic exam this week, and that only to heed the advice of my oncologist.  I now have cysts on my ovaries (what next???) and the oncologist wants the gynecologist to be aware of the situation.  She insists they are cysts, not tumors.  I would like to claim one little part of my body as my own, and not be stuck, X-rayed, scanned, biopsied, etc. at every turn.  The ibrance seems to be working well, but the letrozole is a killer.  I walk and feel like I am 100 years old.  And it is still a mystery to me how I ended up here.  Last year in October I had clean gynecological exam, November clean diagnostic mammogram, and in December I had Stage 4 metastatic breast cancer.  How did that happen?  Has anyone else experienced this?  My mammogram films were sent to an independent radiology facility and they stand by the diagnosis of clean in November.  So how can I be dying the next month?  Would appreciate hearing about your experience. God bless us all....MMR

Member

Re: letrozole se major joint pain/ help!

Hi Ladies, i have been on letrozole for 6 months and have severe shoulder pain and stiffness. My bcn ordered a bone scsn and it jas shown i have arthritis in both shoulders. They will not admit that thos is due to letrozole but i am convinced it is@ they have referred me for physio x
Member

Re: letrozole se major joint pain/ help!

Hello Susan

 

You're clearly having a horrible time. I don't think I could put up with the pain you are suffering. It's good that you're seeing your Oncologist on Thursday and I do hope you get support.

 

If it's of any assistance, this is my present position. After 3 weeeks of Letrozole, I developed a nasty rash across my chest and down my vulnerable arm. The clinical oncologist identified it as a drugs rash, took me off Letrozole and prescribed Anastrozole, to be started once radiotherapy had finished.

 

After 5 weeks on Anastrozole, I was beginning to feel some joint and bone pain early in the morning, and other symptoms which gradually worsened over the next few weeks. By 9 1/2 weeks, the joint and muscle pain was severe as was the fatigue. Other symptoms included extreme depression, extreme irritability, no interest in anything including food, slower cognition like thinking through pea soup, nausea and constipation. I phoned my Breast Care Nurse and, later, a specialised nurse on Breast Cancer Care. They both advised that quality of life is paramount and that many women come off endocrine therapies on account of the side effects. The BCN made an appointment for me to attend a Breast Clinic in my hospital (yesterday) to discuss this with a clinician who is also an experienced oncologist. (So far, although I am assigned to a consultant oncologist in the main cancer hospital, I have been seen by his junior registrar who hasn't been able to tell me very much about anything.)

 

The oncologist in the Breast Clinic was lovely, had 20 years experience, but couldn't tell me much about the pharmacology of the different AIs. She said that their approach was to prescribe one drug after another for any one patient, until they found one that that person could tolerate. She observed that medical science is not really very advanced, and for all that doctors know, there is considerably more that they don't know! On account of my medical history, which includes extreme sensitivity to hormone imbalances, she agreed I need specialised advice and is arranging for my consultant Oncologist to see me (not his junior doctor) together with a specialised pharmacist from the cancer hospital. She observed that hospitals are now more or less run by junior doctors! (I had the feeling she would have liked to have said considerably more.) She also observed that her own knowledge of pharmacology is very poor as the tends to rely on the specialised pharmacists she works with.

 

My concern is that my side effects appear to be those associated with oestrogen deprivation, so I'm wondering whether I'll be able to tolerate Exemestane, which the onc suggested. I observed that I definitely didn't want to try Tamoxifen. Her reaction was to wrinkle her face up and to gasp with gusto: 'NO! I certainly wouldn't want to try it either!' (She quickly observed that there are many women who can tolerate it, but it was clear she didn't fancy joining them.)

 

I really admired the oncologist in the Breast Clinic, she was so frank and honest. Her general message was that whilst she was sympathetic to my need for quality of life, she wanted to be able to say that I had given endocrine therapy a really good try. My problem is how ill I am prepared to make myself before I give up on it.

 

All the best for Thursday.

 

 

Member

Re: letrozole se major joint pain/ help!

i am on letrozole  and have been for a year feb, i broke a couple of bones many years ago, but the pains im getting  now are unbearable, i have just got back from the doctors as my ankle and knee are so painful, i was prescribed painkillers, i am so bloody angry painkillers they dont touch the pain, i have osteoarthritis in my other ankle, osteopenia in my spine, and arthritis now in my jaw, tiredness that is so unbearable, my hands are starting to feel very weak i am going to see onc Thursday and am going to ask to come off it my cancer nurse told me in no uncertain terms that the chances of my breast cancer coming back was slim, i am feeling very depressed.  they say exercise  helps, im on my feet all day at work  and by the time i get home i just can't even think about  exercising the pain is unbearable, i said to the doctor what happens if the painkillers don't  work which they don't,  she said well come back,? for what different painkillers.

Member

Re: letrozole se major joint pain/ help!

Hi all
I've been on letrozole for about 6 weeks and noticed joint pain after a week or so. I also take carbimazole for thyroid which has same SE. Been in these since Xmas.

I have carpal tunnel so fingers hurt too but I've created a little splint from half a nail file under my index finger wrapped in tape. As soon as my finger tightens up I put the splint on...it really works.

I take Naproxen for joint pain that stopped working and was upsetting stomach but doc gave me Omeprazole and now the naproxen works again. It does help a lot as my pain seem all down my right side dominant.

I'm also preparing for my radiotherapy sessions on the 11th Oct so loads of water and moisturiser and daily walks.

My main concern is the hour travelling to and from sessions so about 2 1/2 TO 3 Hours round trip I'm a rubbish traveller.

Hope you all can find solutions that work for you.
Take Care xx
MMR
Member

Re: letrozole se major joint pain/ help!

Hello, I am writing from the US.  Lucked up on finding this forum.  I have been taking letrozole since February, 2018.  I also take ibrance.  I ache all over, have low vitamin D and calcium levels, my bones look like honeycomb, and my right hand is turning into a "claw".  Friends who have completed breast cancer treatment all advise the letrozole is causing the pain.  Not the ibrance.  I have Stage 4 breast cancer, so am being treated as a chronic illness.  Oddly enough, I seem to feel worse during the week I do not take ibrance.  I am on a 21 day on/ 7 day off schedule for ibrance, and take the letrozole everyday.  The process is exhausting.  I noticed today the middle finger of my right hand (dominant hand) is becoming curved up and does not lie flat with other fingers.  I cannot bend it back into shape.  It also acts like a "trigger finger" and gets stuck bent toward my palm.  It seems crazy to be complaining about my finger, given my diagnosis, but it is painful and a constant reminder I am in this mess.  I will appreciate any feedback or suggestions.  Thank you...MMR

Member

Re: letrozole se major joint pain/ help!

Hi everybody. Sorry we're all having problems with this drug. I've been taking Letrozole once a day & Adcal twice a day for about 18 months, & I started getting hand problems last year.

 

I saw a rheumatologist & had a steroid injection in each hand, & started taking Celecoxib, an anti-inflammatory. That meant I needed Lansoprozole each day as well, to protect my stomach from the Celecoxib.

 

At first all was well & there was no more pain in my hands. But it's been coming back. My onc said two experiments were 'reasonable', & I've tried both of them. 1 = increase the dose of Celecoxib. That helped my hands a little but seemed to be bringing on Crohns symptoms, so I stopped after a week. 2 = stop the Letrozole, to see if that's what's causing the hand problems. I'm in the second week of doing that, but with no Celecoxib either, my hands are more stiff & painful.

 

How long does it take for the hand problems (& any other side effects) to go? The hands are the only problem I've found with Letrozole, so I'd be worried about starting another drug. My onc seemed not to think that any one brand is better than another, but I notice how many ladies say Accord is good. My most recent one appears to be TEVA. Any opinions on that one?

 

Has anyone else done this experiment, and how did it work out?

Member

Re: letrozole se major joint pain/ help!

Thank you for the supplement recommendation. I could literally cry with the shoulder pain and how debillitating it is. I cant reach up or sideways and struggle to undo my bra or wrap a towel around myself after a shower. It is getting worse so hoping tje supplement works xx
Member

Re: letrozole se major joint pain/ help!

Hi, I know what you are going through. I also tried taking medication at different times but there was no improvement. I don't want to give you false hope but I have found a supplement that has worked wonders for me. Until a few weeks ago waking up and going downstairs was hell for me, my right hand fingers were blocked and my ankles were agony but not anymore. I have been taking Seven Seas Joint care complete with Glucosamine Omega 3 Chondroitin and Vitamins D,E and K. The capsules are large but the results are worth it. I hope I have been helpful.

Member

Re: letrozole se major joint pain/ help!

Morning I can so empathise with you. When I look back in the date if that initial post I can say that the pain is still the same.
I have recently been to see an Osteporosis specialist ( yes ended up fracturing one rib just by putting something in the back of the car 15 months after I started taking letrozole ).
He did quite a lot of blood tests , bone turn over markers , vitamin D ( low levels can cause joint pain) he also sent a copy letter to my oncologist I have recently seen her , she was kind enough to recognise that nobody was helping me 🤔, she said that it was the letrozole causing my pain. She has given me a month off and then I will start on tamoxifen. I am worried about the side affects of another drug but at least my bones won’t be affected any more.
I take my meds at 6 pm which was ok for me.
I wish you well and hope that your side affects reduce. Xx
Member

Re: letrozole se major joint pain/ help!

I’m brand new here. I am taking Letrozole. I was taking it in the morning. I have unbearable joint pain and stiffness. It was easier for me to work while I was on chemo than now. I’m going to try to take it at night to see if the SE’s are better. At night I must clench my fists but in the morning I have to painfully unpeel my fingers. My shoulders hurt the most and it’s constant. The pain wakes me up if I move.
Member

Re: letrozole se major joint pain/ help!

Hi. I was prescribed Letrozole after being on Tamoxifen for 5 years. It was ok at first, but then I would get increasing joint pain, tiredness and flu-like symptoms. I stopped using it and the symptoms went away. Tried the different brands, but most were no better. My oncologist then switched me to Exemestane, which is a sister drug to Letrozole and Anastrozole. I take Aromasin brand and feel so much better. It may be worth seeing if you can try it. Good luck.

Member

Re: letrozole se major joint pain/ help!

It's an awful drug. It truly ruins the quality of life. The pain takes you right up to the edge. I will ask the Doctor for the Accord brand and try that.
Member

Re: Knees ankles hands fingers

Hi, I too have been on Letrozole for 18 months, I take it in the evening and haven't had side affects with nausea. I usually take Accord brand which for me gives me the least side affects, if I take another brand I suffer with terrible joint pains. Some chemists will order your preferred brand in , although it can be hit or miss though, I try several pharmacists and I found that if they have Accord in stock they will put it to one side for me. 

A baseline Dexa scan should be done as you start on Letrozole, I had one as I started on my treatment and recently requested an earlier one due to hip pain. I also find that using a hot wheat bag , particularly in winter time helps me tremendously, I try to avoid taking pain relief as I would be taking them every day, I do take them but prefer to limit amount to avoid side affects. Xx

Member

Re: letrozole se major joint pain/ help!

Ferns I'm on anastroxole for 6 months and this last month along with my other pains I've got shooting burning pain around and under my shoulder blade and around rib under my breast.Haven't heard of anyone else who's had this.
Member

Re: letrozole se major joint pain/ help!

Beetle I really sympathise.I am on anastroxole and my side effects sound the same as yours..can't stand in the morning, can't get out of a chair without pain.Seize up after no movement but hurt after too much.Am trying to work 20 hours a week where I'm on my feet all the time and grab 5 minutes here and there and the pain gets me down.Am having a dexa scan next, I suggest you ask for one.
Member

Re: Knees ankles hands fingers

Hi Beetle I started letrozole in 2015 and the first few months were horrendous for me especially my shoulders I could hardly lift my left arm I went to my gp after I had chatted to other ladies and decided to change brands I was originally on the cipla brand which for me was awful the gp requested I start accord brand and yes I still get aches and pains especially in the morning but it's so much more  manageable I occasionally take an anti inflammatory which helps at one point I wanted to throw in the towel but then I put my sensible head on as I know what this drug is preventing good luck and hope you get sorted love Judi xxxxxxx

Community Champion

Re: letrozole se major joint pain/ help!

Beetle
It's just not funny how such a small little pill can cause so much problems ..it might settle down as its early days still ..I have been on it 20 months ...taking painkillers on a long term basis is not good either . If I have the aches I use a hot water bottle or a rub in cream like deep heat .
If it gets too much than maybe you could swap to another hormone pill ..there are a few options . After the whole bc thing ..you do want some quality of life now ..as leyrozole can be 5/10 years ..
Hugs xxx
Member

Knees ankles hands fingers

Hi, on this beautiful summer evening. I have been taking letrozole since April 2017, I had previously taken tamoxifen for 2 and half years.  I can cope with the hot sweats, I have chillow, it's the heel, ankle and knee pain that is getting me down.  My doctors, as wonderful as they are do not seem to be able to advice on this.  What pain killers can I safely take as I am not able to stand when I wake up or have been sitting for a while and after driving I have to slide out of the door in front of everyone at work and try to conceal the pain I am in for a few minutes.  I have carpel tunnel in both hands one hand I have had cortisone and one in the other tomorrow but don't think they can inject my whole body.  I so want to be able to do gardening is there something I can get doctor to prescribe?? My doctor took photos of my reconstruction and was amazed at what I'd had done he had never seen this before.  Do I need a bone scan, I feel as tho I need to ask for this and painkillers as they don't understand how much my life is being affected.  I am forever in debt to our NHS for such wonderful surgery and aftercare but in order to work and just potter in garden this is almost impossible now, I am determined not to get low, I do walk but gave up swimming as legs and arms were not improving.  My legs feel heavy as tho I am a wet heavy sponge. I am scared to take any pill without advice

thankyou

Member

Re: letrozole se major joint pain/ help!

hi I am on my third lot of letrozole and seem to have all side effects going, painful joints, itchy, back pains you name it I've got it, never suffered indigestion before but now it's horrible so painful. I am most concerned about my legs and ankles have started to swell and are painful to touch, has anyone suffered from this and is it all part and parcel of taking letrozole and something that has to be endured for next 5 years? If these side effects continue I'm not sure if I can persevere. I feel like an old person.
Member

Re: letrozole se major joint pain/ help!

I think my pharmicists must be trying to save money. Been given a strange Dutch brand - pom? - Makes me more achy than either cipla or accord so will ask them to chage me back x 

Community Champion

Re: letrozole se major joint pain/ help!

Hi tili
I also find the "accord " brand better than cipra which I had for five months. I'm told by the chemist ..the doctor has to authorise a particular brand so i think I will ask doc for that.
The hair loss is better to.
Member

Re: letrozole se major joint pain/ help!

Hi girl, have been on Letrozole for 9 months, 1st few months were horrible, however I think a chat with the pharmacist at your chemist maybe they can get another brand for you at the moment I have ACCORD and feeling much better and in control of myself. Lots of love and good wishes

Member

Re: letrozole se major joint pain/ help!

Maryed I agree with you totally and have also stopped takiing it. Not told anyone yet. Have my first reviee on afriday!!! Guess I will get a lecture but I need to work.

Member

Re: letrozole se major joint pain/ help!

 

I was given Letroxole after surgery and radio therapy for breast cancer i had  about eight months ago.  About two month ago i started to have pain and in spite of pain killers the pain became unbearable I couldn't put my foot to the ground and was unable to put any weight on it.

 

I think this is a horrible drug and since I stoped taking it about ten days ago am already fealing better.    I rather take my chance than this drug

Member

Re: letrozole se major joint pain/ help!

I have been taking Letrozole for about 7 months. I was diagnosed last November with IDC, had lumpectomy and results were grade 2, no nodes or vascular invasion and clear margins. I started aching in the third week of radiotherapy and haven't stopped aching since. I get general aches but the main ones are in the outside top of my arm and shoulder which has got worse. I get a shooting pain in the top of my arm and shoulder if I lift my arm too high or if I reach for something behind me. I get a bit confused and wonder if it's letrozole, rads or nerve damage or a combination of them all ? You can't help thinking about more sinister reasons but as I was caught nice and early I'm hoping it's something that will go away. I have my first year check up in November so will ask about it then. Anyone share my symptoms ? Xx
Member

Re: letrozole se major joint pain/ help!

I used aloe Vera in the past for a bladder problem and it was very good. Thanks for reminding me about it I think that I will try it again.........:-)
Member

Re: letrozole se major joint pain/ help!

Hi lynnq.  I agree pain killers do help a lot, but I find that they make me very constipated, even paracetemol.  The onc says its probably as a result of chemo leaving me with a sensitive gut.  I find the pain is worse when I am tired or I have been on my feet a lot.  I try to pace myself and sit down when I can.  Also I go for a 30 minute walk each day which does relieve the pain. I've also learnt not to try to push my way through the pain and will go and lie down on the bed for an hour when the pain is bad.  

Member

Re: letrozole se major joint pain/ help!

Hi.  I too am taking letrozole and suffer from joint pain.  I take aloe vera capsules to keep my hair, nails and skin in good condition.  If you can take the juice that is better but it is very expensive and tastes really bad.  You can get high strength aloe vera capsules online at a reasonable price.  It's certainly worth a try.

Member

Re: letrozole se major joint pain/ help!

Hi Janro.....are you taking painkillers?

I have been on LETROZOLE now for ten months and like you I have joint pains. I have some good days when it is only noticeable when I have to stand after sitting and other days when I just seem to ache all over. I am not a good sleeper and I find that the better I have slept the night before the easier the joint pain seems to be.

I also sometimes take Ibuprofen. I don' t take them too regularly because I have an hiatus hernia.

My BCN suggested that I take them with food and instead of just taking the odd one when the pain gets bad to take them three times a day for about three days this gives them the opportunity to build up in the body and reduce some of the inflammation Ithen find that I can go without for a few days. Sometimes I alternate with paracetamol as well.

A couple of weeks ago I seemed to be taking them every few hours, but have not needed any at all this week. I am feeling achey today but had a couple of long (3 miles) walks yesterday and the day before so that may be why. The Onc said weight bearing exercise is good so I try to walk every day, even if it is just for 15 minutes around the village.

I am also on Zometa every 4 weeks and Adcal supplement daily. These are the only treatments that I have had. ..apart from surgery . When I first mentioned the aches to the Onc he did say that there was other things we could try but I have had vey encouraging results on my scans and also tumour markers in the last ten months so do not want to stop the LETROZOLE. Unless the pain gets really bad.

Apart from the joints I have had no other SE so I can't complain. I find it strange that it can be such an effort to stand up from sitting, and yet once I am up after a few minutes of moving around it almost disappears........
Member

Re: letrozole se major joint pain/ help!

Hi Janro sorry to hear of your joint pain. I find that things are improving for me, been taking it for a couple of months now and the pains are not as frequent (usually early hours) or as bad.  Hot flushes too, unless I am getting used to them. Worse thing for me is my hair is shedding, a lot! Amyone know of any supplements that may help?

Member

letrozole se major joint pain/ help!

I have been taking Letrozole for 6 months due to having a pulmonary embolism and no longer able to take Tamoxifen. The joint and muscle aches are so bad that I am limited as to what I can do ( can't get in and out of bath or chairs ). I don't want to stop treatment because of the long term benefits, does anyone have any suggestions pleaase?