AI's Is there anybody who DOESN'T experience joint pain?

[Guest user]

Carolyn

I am on Letrozole and I do find my knees get stiff when I sit and sometimes when I am lying in bed. However, it is not severe and I do sympathise that you are having such pain. I have come to the conclusion that the tablets exacerbate existing problems, as I have problems with my neck. It has definitely got worse. I imagine it is wear and tear, although I haven't had it investigated because when I had a scan on my painful shoulder, that was what I was told then.

I do take cod liver and fish oils and Glucosamine Sulphate and Condroitin and I think they are helping. Have you tried any?

I know laurasue (Chris) has problems with her knee and has posted on here about it.

I hope you can get some relief soon.

Ann x

[Guest user]

re joint pain

Just wondered if anyone suffered severe knee pain. I have severe pain in my left knee the dr x rayed it and said it was osteo arthritis not bad enough to have anything done so just to take painkillers and get on with it. Ok for him to say that its not him thats up during the night in pain and suffering all day. It has got worse over the 2 years i have benn on tamoxifen. Just wondered if anyone had suffered the same. Has anyone any tips.

Thankyou

Carolyn x

[Guest user]

Hi Ann
That's an interesting article... thank you for posting it,
I seem to have all of the side effects in various degrees of intesity!

the comment ".....While low estrogen may make the fat pad on your belly larger..." Now I have something else to blame on Aromasin, next time my husband makes some comment about my weight gain!!!! I will tell him that it can't be helped and enjoy another biscuit without so much guilt!

Take care

Nicky

[Guest user]

I found this interesting article which is about oestrogen imbalance and it describes symptoms of low oestrogen really well.

http://surmeno.blogspot.com/2006/03/symptoms-of-estrogen-imbalance.html

How are you Chris?

Ann x

[Guest user]

Not sure what we can do sadly. I have been on Arimidex for 6 months and my joints are causing more and more problems. It started with my knee and now I have a hip bursitis plus loads of stiffness especially first thing in the morning. I even have central back pain. I have never experienced these problems in the past. Oddly walking sometimes seems to improve things, even if my gait is rather strange!

Encouraging to see on this thread that the problem can subside, fingers crossed.

Chris x

[Guest user]

Hi everyone

I have been on Arimidex for 15 months now and have really achey legs most of the time, especially when getting up in the morning or after walking a lot. Sometimes they hurt/ache quite a lot and I find it hard to stand up (without saying ouch). To get up from the floor I usually have to use a chair as my legs dont seem to have the strength to get me up without help. First thing in the morning they are quite stiff going downstairs so I hold on to the banister incase they buckle!!!!! I am 54 not 96!!!!! Eight years ago I ran a marathon!!!!!... maybe thats the reason for the arthritis in my right hip but not the heavy/achey legs. What can we do ?????

[Esme]

Hi Everyone,

Thank you for that Pargayan. I have to say I was worried about clots too! I had a really bad bout of flu which lasted nearly two weeks, Doc thinks it may have been swine flu, who knows? Anyway I was quite inactive and was worried that it may be a DVT. The pain you describe sounds much the same though so hopefully just another of the annoying SE's of Arimidex!

Hope I'm making sense, I'm babysitting my 2yr old Grandson and don't seem to be capable of doing that and other things at the same time!
Esme x

[AnneS]

Hi Beldie,
I'm no medic (just 7 years of learning through living with BC!)I wouldn't have though that they would put you on Arimidex alone if they thought you weren't menopausal unless you're having zoladex injections (to stop the ovaries from working)as I am as although blood tests have shown I was peri-menopausal after my chemo in 08 because of my young age(just 40)my system could possibly have kick-started again and I know that Arimidex does not work on pre-menopausal women. Did they test your blood before giving the Arimidex. Chemo doesn't automatically put you into menopause - it depends on your body and age. After chemo in 2003 my periods stopped for 6 months but then came back as normal.
I would ask your oncologist or breast care nurse if you're concerned.
Also just to say that I also got a lot of joint pain for the first few months of Arimidex but 18months down the line I hardly get any pain at the mo - just a bit of stiffness so I hope it improves for you too.
Take care,
Anne

[Guest user]

Hi All
just started arimidex 5 weeks ago.Have joint pain & stiffness. Am taking cod liver oil & glucosamine caps. They do help.Is anyone getting period pain but no period? Had chemo so am assuming am through menopause. Am 54 but think I was peri-menopausal?? before chemo.
Beldie

[pargayan]

Hi Esme
Just this week I had a dull aching in my right calf that seemed to move down the back of the calf and then up again. I did wonder if it was a clot as I work in a sedentary office based job, but the next morning it had gone. I can only put it down to Arimidex, I have been on it since the end of September 09 and have also been taking glucosamine chrondroitin and MSM tablets since before I started on the AI. I must admit that I do not suffer from horrendous problems that some people have and can only put it down to the glucosamine - I daren't stop them in case the minor aches get worse. A lot of the aches are the same as I went through during the menopause so I put it down to the tablets working reducing the oestrogen which is good news, no food for the dreaded bc.
x

[Esme]

Hi,

I'm just wondering if anyone else on Arimidex gets shooting/throbbing pains in the calves of their legs. I get a lot of joint pain but the pains in my calves gets really uncomfortable at times and I wonder if this is also a SE.
Esme x

[jackwagstaff]

Thank you Lucy , I´ve read the booklets . I will continue to take my assortment of herbal tablets until I see my onc , then I will have to have a really in depth discussion . I´m sure he´ll put me right and I can ask him all the questions I need about the letrozole.

[Guest user]

jackwagstaff - Just a thought but I am not sure that you should be taking sage, black cohosh and red clover as your bc was obviously hormone receptive and they contain phyto-oestrogens. There is much debate about this, however.

I understand that Evening Primrose Oil and Star-flower Oil (which are natural) do not contain them and neither do Cod Liver Oil and Glucosamine Sulphate. As you say, best to discuss it with your oncologist.

Ann x

[Lucy_BCC]

Hi all

Here's the link to our 'complementary therapies' and 'menopausal symptoms and breast cancer' booklets which contain some information about some of the supplements some of you are taking so you may find them of interest:

http://www.breastcancercare.org.uk/upload/pdf/complementary_therapies_aug07_0.pdf

http://www.breastcancercare.org.uk/upload/pdf/Menopausal_symptoms_factsheet_BCC18.pdf

Our helpline is open weekdays 9-5 and Sat 9-2 if anyone would like to speak to one of our specialist nurses or trained helpliners about any supplements they are taking on 0808 800 6000.

Best wishes
Lucy

[jackwagstaff]

Thanks Ann and River for your comments .
I do sometimes feel like I´m walking through a minefield , not quite sure if where I´m going could be worse than where i am .. if you get my drift .
I don´t want to put myself at risk of a reoccurance , but I would like to stay at least as mobile as I am at the moment , not withstanding the fact that I´m obviously aging on a daily basis ( Help !)
I next see my onc at the end of March , the day after I finish rads, and thankfully he does speak english , so I think I will have to have a long talk with him .
I took evening primrose many many years ago , but the list of supplements I´m taking at the moment is so long I don´t really feel I ought to take anything else . I think he´ll throw a fit when he realises that I´m taking sage , black coash and red clover as well as the cod liver oil , glucosamine .
Shake me .. I rattle .I suppose another pill won´t make much difference , but I do prefer the "natural " ones , these others worry the life out of me .
Thanks ladies !

[Guest user]

jackwagstaff - I don't think you are stupid, either. I get the impression from what I read on here that maybe Letrozole does not cause quite as many problems as Arimidex, but that may be because fewer people are taking it. I have been on it since November and I admit I have a bit of stiffness after sitting and I have neck pain, which I had to start with, but which has worsened recently. Apart from that, I am fine. I don't have trouble getting out of bed in the morning, or walking. I know it is early days but I think it would be worth you trying the tablets. You can always stop, or change, if you have problems. Personally, I would put up with (almost) anything if it meant that I didn't get a recurrence.

I know I keep saying this on here but have you tried Evening Primrose or Starflower Oil for the other symptoms? I have been taking EPO for several years and don't seem to be suffering as much as the other ladies. I admit that I do wake up at night, I do get too warm, have tinnitus and my memory is rubbish, all due to low oestrogen I imagine, but I don't have hot flushes or sweats as such. I am sure the EPO has helped. You would have to take it for a while to feel the effect, though. Like you, I was on HRT before diagnosis and so a lot of my symptoms are due to stopping that and I don't think they are specifically caused by the Letrozole as I had them before starting the tablets.

Good luck with your decision.

Ann x

[river]

Hi
No you're not stupid! You're questioning, which is a very wise thing to do. I can understand your fears - reading through posts where people have problems is really worrying, to say nothing of the list of potential side effects which accompany the tiny tablets.
I'm taking Arimidex - I started 5 weeks ago, but had delayed for a few weeks. I think they have similar listed side effects.
My onc said that if I have problems, she would be able to try something else (probably letrozole!) and my surgeon says he has very few patients who have bad side effects - most people cope very well with them. So, it seemed worth trying for me, and I haven't suffered anything drastic so far - but I expect the impact is cumulative.
As you've already got some joint problems it's a bit different. Have you had a bone density scan?
I also asked my onc about the real benefits - statistically - of taking Arimidex. I felt it was worth it for the reduced risk of secondaries over 10 years.
I wonder whether you need another conversation with the oncologist to understand the benefits to you?
good luck and enjoy your walks - sounds lovely!
River

[jackwagstaff]

I´ve read all your comments and I´m really concerned about starting taking letrozole.
At 58 I´m not as active as i would like to be , but I do walk my dog for at least an hour and a half every day through quite undulating countryside . This is my joy , I love it . However , I have had kneee problems for about 12 years , and getting worse ,now my one ankle and my back are stiff and play up at times . I take cod liver oil , glucosamine etc etc . I don´t want any more joint pain .
I came off HRT when I saw my mamagram and realised I had a problem ( last november ) the hot flushes and night sweats are horrendous , it makes me feel weak ,disorientated and my mood swings ...??!!
If I´m a nightmare to live with now , what could I be like taking the pills ?
At the moment I´ve completed 8 of 25 rads ,should have started the pills five weeks ago , and I´m still dithering .
Am I stupid or what ?

[Guest user]

Cathie

My son bought me a wheat bag recently. I heat it in the microwave and put it round my neck. Lovely!!!

Ann x

[Everton_babe]

Hi Ann 04

Isnt this neck pain a pain in the neck! Im having a lot of trouble with it and have started getting some back,neck shoulder massages to see if theres any relief. Have been worrying about it and hoped it was just a SE - im on Tamoxifen since Dec.Other joints are troublesome too,hands and knees. Might try some of the ideas in ths thread, but made an appt for GP for a wee bit of reassurrance.
Take care
Cathie x

[Guest user]

I have really bad neck pain. I had it a bit before dx but it has got much worse lately. I am on Letrozole. I have bought a book to try and help by doing neck exercises, tried various pillows, etc. Going to see GP next week. Probably wear and tear. I am sure using the computer makes it worse, so have ordered a lumbar roll to make me sit up properly.

Anyone else with neck pain?

Ann x

[highball]

Hi, I think I've joined a similar thread to this before. I've been on arimidex since March 2008 and apart from occasional cramp in my feet and toes haven't had joint pains. However I do take a fish oil capsule every day (originally for arthritis in my thumb joints) and 5000iu Vit D3 every day as there's evidence that this discourages recurrance and also helps with side effects from hormone therapy. If you are suffering a lot from joint pain VitD3 would be worth a try, even if you only take the dose available from a pharmacy (I get the high dose tablets from the internet).

The side effects I do have are thinning hair, which was very fine in the first place - I've bitten the bullet now and had it cut shorter than I like - and badly reduced bone density. I should have had a bone density scan before I started the drug, but this wasn't done until AFTER I fractured my leg - by standing on it!

[Lucy_BCC]

Posted on behalf of new user Carol

I have been taking a mineral called boron for the last 5 months and it has greatly helped with joint pains. I have found it very useful for hot flushes.

Hope it helps.

[pargayan]

Hi all
Have been on Arimidex since 21st September 2009. Initially suffered a return of my flushes and waking every couple of hours at night and suffered cramp as well and bad pains in my knees. I also had a bad back and wasted money on visiting my chiropractor before realising that it was probably a SE.
I have been taking Glucosamine Chrondroitin MSM tablets since before I started on Arimidex and still suffer with stiffness when sitting for too long. I daren't stop taking the glucosamine in case it all gets worse.
I also noticed that my underarm and leg hair was not growing as quickly as before and as Carrieann mentioned, I get breathless quite easily. I can only assume that Arimdex are the cause of the breathlessness.
My surgeon says it is good to have SE as it proves that the tablets are working!!
As you say
Has anyone else suffered with bad moods and depression?

I found the inital months such a whirlwind that I did not really get time to analyse it. Now I find I am brooding over everything whilst giving an outward impression of coping ok. I did not have to have chemo or Rads and find it hard accept that tiny tablets can make you feel so rough. Either that or I have not actually dealt with the whole scenario. I hate the not knowing what is to come, it seems there is no rhyme nor reason as to why some people never have a recurrence and others do. What a hateful situation - sorry for the moan just a bit down this evening.

Love to all x

[Guest user]

I've been taking Arimidex since August and my joints are a bit stiff when I've been sitting for a while, (I've got the penguin walk when I get up in the morning and the gorilla walk when I've been active and have sat down for a while - lol) but they soon ease up when I move. No pain at all really. But I've been taking glucosamine and cod liver oil for years and I swear by them.

I agree with Julia; if you have a problem tell your onc. I had major problems with tamoxifen and they switched me to Zoladex and Arimidex, which are much better for me.

Sal

[Guest user]

Hi
I have been on Letrozole now for 8 months. At first the joint pains were awful, legs, knees, ankles and hands. With the approval of my onc I started taking Glucosomine and Cod Liver oil. Although I still have a problem when I first get up in the morning it quickly sorts itself out and by coffee time I am as near normal as I can expect to be. The hot flushes seem to come and go. I just think they have gone away and suddenly for a week or so they come back with a vengance.

I have also noticed a thinning of my hair, but my weight has remained reasonably stable, any increase has more to do with chocolate than AI's.

Good luck everyone

Andie

[Guest user]

Hi: Just read thru this – I started on Arimidex last Feb after chemo and rads. Didn’t have too many problems, few hot flushes at night – I am 62, ten years post menopausal so had all that before – which gradually wore off. I don’t have aching joints but do have trigger finger problems which I don’t think are caused by the pills. My Onc changed me to Aromasin in December as he said it gave better long term protection and gave fewer joint pains. I did drop 6lbs in the first ten days coming off the Arimidex – I had six weeks off to let the drug drain out of my system – and so far have put 2lbs back on. I seem to be breathless at times, but that may be due to the terrible cough I have had for the last few weeks – always get this in Jan but it is much worse this year.

I guess we all take the view that we need the protection and therefore have to put up with some side effects – I will continue with the Aromasin and see how it goes. Want to get back to hitting a golf ball later this year - I was never that good but it will get me out and about on the days I don’t work (two days per week) and maybe even get rid of some flab.

Good luck to all but don’t suffer – talk to your Onc or support people and see what they can do to help.

LOL

Julia

[Guest user]

Been having arimidex for about 5 months now. My wrists, fingers are stiff and painful anyone else noticed this

[Guest user]

If river's the baby, I'm the virgin...Due to start arimidex shortly, rads planning next week so the tablets should be around soon...
I am 50...51 on monday...I have no aches or pains anywhere at the moment........
I was told to give the tablets 3 months to settle down....
Really praying I'm one of the lucky ones, with no SE if they really do exist...

[Guest user]

I have been on Tamoxifin, Arimdex and now Aromsian, the first 6 months on all of the tablets have given side effects, some worse then others but I have found they settle after about 4-6 months.

I haven't joint pains but have stuggled getting up from sitting down but once walking the stiffness goes away. Maybe my knees are a bit achey but nothing too bad.

Skin has aged, hair has thinned, gained weight.

I do suffer severe tiredness but have done since the end of the treatment - start of 2005. Stamina never returned. So don't know what to hang that one on.

Paula x

[river]

OK, I'm a baby here - only been on Arimidex for 10 days! But I've already noticed that my fingers are stiffer in the mornings - I've suffered from it since the menopause 5 years ago, but they had got better. I'll let you know after a month or so...

[Guest user]

Nicky

As I said on another thread, I have been on Letrozole for 3 months and had a few twinges to start with and I do now have stiffness after I have been sitting for a while, but not too bad. I do have a stiff painful neck, but I had that beforehand, although it has got worse. All in all, can't really complain.

Ann x

[Anthi]

Hello everyone. I've been on Aromasin for two and half years and have quite severe joint pain.
I guess this is better than the alternative.
Good luck everyone
Anthi x

[Guest user]

Hi!
I've been on Arimidex for 6 months now and am still suffering exactly the same symptoms as you are - so it doesn't seem to be stopping I'm afraid! xx

[Guest user]

Hi, I've been taking Arimidex for about 10 weeks. My ankles, knees and hips seize up if I sit, stand or lie down for any length of time. The stiffness wears off very quickly once I'm mobile. My finger joints stiffen too but only after a Zoledronic Acid infusion.
I'm 40.

Bad Fairy x

[Guest user]

Hi Nicky
I've been on Letrozole for just over 6 months and have some joint stiffness but am not sure how much is related to the Letrozole. My fingers are arthritic and ache on and off most days. Hips, knees and shoulders are the same. The biggest problem I have had is with Alendronic acid which made my fingers swell so much that I needed to get my rings cut off!!! Now I'm trying Risedronate which fingers crossed seems to be OK.
Cheers
Margaret
I'm 64 so maybe this is just my age!!

[Janice]

Hello there

I have been taking letrozole for 6 months, at first I had horrendous hot flushes which I am pleased to say have eased of late. The joints in my hands and feet seem to be the worse but I have been taking Glucosamine Sulphate for a few months and I am sure that has helped.

I just have to keep reminding myself why I am taking them, its hard to keep taking something that you know is making you feel old and decrepit.

I am 62, when I get told you are only as old as you feel I could hit them as I feel about 90.

Have you found your hair has thinned at all, mine has although everyone says they can't tell but I can.

Take care

Jan

[Guest user]

Hi all

I would be interested in knowing if there is anybody on Aromasin or any other AI's who doesn't suffer from joint pains and or general aches, In the accompanying leaflet it says more than 1 in 10, but I've yet to speak to anyone who doesn't suffer from joint pain! They should edit their leaflet if everyone or certainly more than 50% suffer. By more than 1 in 10, they probably actually mean 99%!

I can't straighten up quickly and my legs and fingers throb when I first get up. I have only been taking Aromasin for 6 months, but it has 'aged' me decades in this time.

Please respond if you take any AI's and we can see for ourselves what a more accurate figure is,

Thanks Nicky