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Pain relief for sore joints when taking anastrozole

Magical_Moon
Member

Re: Pain relief for sore joints when taking anastrozole

Hello Kristind,

Welcome to the thread and thanks for posting your BC experience.  I am sorry to read you are having awful side effects too. It must be very frustrating having problems with your hands especially being a pianist.

I hope you will get a few suggestions from fellow sufferers who are having joint pain issues while taking Anastrozole.

From my own experience, I am allergic to Ibruprofen, Tramadol, Codeine and anti-inflammatories so it took my GP several months to find an alternative medication which helped to reduce my severe joint pain.  It is a prescription drug called Amitriptyline and not sold over the counter. At low doses it is used for neuropathic pain.  I've been taking it for two years now.  It has not got rid of my chronic joint pain completely but it has certainly reduced my pain from 'unbearable' to 'manageable'.

If you can't find an over the counter drug to reduce your pain, you may feel like trying Amitriptyline via your GP.  It is always a personal choice which medication you try.

Good luck and a big hug.

M x

 

ETA.  GP started my Amitriptyline dose at 10mg a day but it wasn't until I gradually increased it to 25mg a day that I got the noticeable pain relief.  Some ladies I have met on this Forum got pain relief at a lower dose.

kristind
Member

Re: Pain relief for sore joints when taking anastrozole

Hello to everyone!  Finally a forum that is relative to my pain issues!  BC history:  Diagnosed at 49, Nov. 2012, lumpectomy 2013, Lobular, ER+, 2/16 pos. in lymphnodes, Onco score 11/100 chemo, radiation all completed Oct. 2013. Tamoxifen to Exemestane and now Anastrozole since Sept. 2015.  

 

I'm experiencing ALL the pains described in this forum.  Lately my hands are experiencing tremendous pain, especially from forearm to thumbs. Sometimes driving a car with arms upward on steering wheel makes hands go numb and thumbs have locked up and twitch.  Massaging such a lot and squeezing a hard spongy object. Going to pursue physical therapy, yet feel it will provide only temporary relief; will see. Is there any over the counter pain relief outside of ibuprofen?  Oh yeah, I'm a pianist; figures I'd get this pain.

 

Lastly, I've experienced anxiety, as well.  Usually know how to get through with breathing or knowing triggers like extreme heat.  Anyone else with this symptom?  Positive thoughts to all...Kristind

 

 

Bibi44
Member

Re: Pain relief for sore joints when taking anastrozole

Interesting discussion ladies! I was saying the other day to my HB that I wished I wasn't ER+, so didn't have to take the tamoxifen, but then I caught myself & said, but then I would have had a poorer survival number, which I don't want either!  It's a bit like brexit really, a rubbish choice between two unattractive alternatives😊.  Only each individual can decide what is right for her or him.  My oncologist said people are playing with fire if they don't take them & you might get lucky & you might not! We'll never know what would have happened.  You have to decide if your quality of life is so poor on them, that you are prepared to take the chance.  None of us wanted to be here, but it's happened to us all, more's the pity. Good luck everyone xx

Brenda S.
Member

Re: Pain relief for sore joints when taking anastrozole

I'm replying especially to Kim555pink.... I think your reply has been the most balanced and helpful I have seen.  Yes, I too hate staggering about like a 90 year old first thing in the morning and my quality of life has changed.  I also have trigger fingers on both hands.....but am not going to give in....the aches do improve the more active I am.  I do lots of gardening and go to gym a couple of times a week. It just takes a bit more willpower to get started!  I too am thankful that there is a pill that will hopefully prevent the cancer from returning....something  that wasn't available, or as successful, years ago when members of my family were not so fortunate.  Good luck, and keep as positive as you are now,  I'm sure your post will have encouraged others like me.  Brenda. 

Rita SF
Member

Re: Pain relief for sore joints when taking anastrozole

I've been Anastrzole for a month and am starting to get the joint pains and stiffness everyone is mentioning.

Just curious if anyone has tried bioflex or other over the counter joint painmeds that has glycousamine and gotten any relief. 

Thanks 

Kim555pink
Member

Re: Pain relief for sore joints when taking anastrozole

I've been on Anastrozole for about 10 weeks now, started with the Accord manufacturer for the first 4 weeks (no side effects) then once I got my prescription from the GP the local chemist stocks the TEVA manufacturer which I've now been taking for 6 weeks. Side effects I'm getting now are stiffness of my joints especially when I've been sat or lying down for any length of time and aches and pains in my feet and hands usually at night only. I can't really say which manufacturers version is better though because it could be the build up of my body being starved of oestrogen which is causing me aches and pains so I do agree with Magical Moon, you can't condemn one manufacturers product because their side effects seem to be different for different people. Our tolerances are different to each other. As much as I don't like staggering around like a 90 year old first thing in the morning when I get up, it does ease and I think I'm quite lucky with my side effects so far. Just pleased that the oncologist was able to prescribe something to help stop the cancer returning!
Sending you all my very best - hope those of you suffering are able to find a solution soon 😊 Xxx
Cesrabbit
Member

Re: Pain relief for sore joints when taking anastrozole

An interesting thread. I've been on the Accord brand since September 2015 with no obvious side effects. I ache a little, feel tired sometimes in the afternoons sometimes..but I'm 55 and would imagine I'd feel like this without the drug anyway. I was ER/PR 8/8 so will take it for 5-10 years if I'm allowed to.
Jayne49
Member

Re: Pain relief for sore joints when taking anastrozole

Hi I just wanted to let you know my experience of taking Anastrzole. I only took the drug for 3 months then I had to come off it. I was in so much pain, all my joints ached and was unbareable. I have been off the drug for 6 months now and I still have the problem if not worse. I cannot walk up the stairs properly, my knees creek and I have to walk upstairs sideways. I am on tramodol and that's not working. I am totally fed up so I arranged to see consultant, who has done lots of blood tests and I hope to get the results in 2 weeks and maybe will get some answers and something to ease the pain in all my joints.x

Magical_Moon
Member

Re: Pain relief for sore joints when taking anastrozole

Wow, 930Sun!
You have been busy posting the identical post on six different Forum threads. I have decided to respond to only one of your posts on this thread because it is one of the most popular threads.
I am sorry that you have had spotting after two years, it must have been alarming for you. However, many ladies take the Accord brand and do not have this rare experience/side effect. It is therefore very unfair to scare ladies who take the Accord brand.
You are claiming that the Accord brand is 'dangerous'. I think the use of the word 'dangerous' is OTT and scaremongering. Using this terminology does not help support the many women who take Anastrozole (Accord) to reduce their risk of a BC recurrence. When we take these 'life-saving' drugs, we are fully aware they are powerful, toxic drugs that can cause unwanted side effects but they extend our survival from this awful disease; breast cancer.

As quoted in a medical paper:
"Women with breast cancer, and even some of those who want to prevent breast cancer, will know of the Holy Trinity: Tamoxifen, Aromatase Inhibitors and Herceptin the 'chemotherapy' drugs that can fight breast cancer; the drugs that can help a woman beat breast cancer."

You are recommending the Teva brand and condemning the Accord brand just from your own experience. I took the Teva brand and had very bad side effects so you are lucky that you had no side effects. We are all different in finding the brand that suits us best.
I have been taking Anastrozole (Accord) for nearly two and half years now with side effects too. This is because my body is super sensitive to having my body almost completely depleted of oestrogen by approx. 97%.
As already stated, it is known that Anastrozole (all brands) can cause some ladies to have severe side effects but these side effects can change with different brands. This is mostly attributed to the different binding agents used by different pharmaceutical companies. Nevertheless, the key ingredient is exactly the same in all brands, i.e. the chemical compound, Anastrozole. The amount of drug is 1mg in all brands.
For this reason, it seems somewhat questionable that the binding ingredients in the Accord brand (small proportion) have suddenly caused you to have the spotting of blood. You do not say how long you have been taking Anastrozole for. Personally, I would go to my GP to discuss the blood spotting and ask them to check that no other medical condition has caused the bleeding.
Take care,
M x

 

930Sun
Member

Re: Pain relief for sore joints when taking anastrozole

In the hopes of helping several women please post and share my experience:
Try TEVA brand NO side effects!!!
My pharmacist switched brand to Accord and I had horrible joint pain and spotting blood after 2 years no cycle.
Accord is dangerous if it can stimulate ovaries after 2 years. 💖
Ask your pharmacy to order TEVA and if you have a bottle of another generic brand they should replace it.
Brenda S.
Member

Re: Pain relief for sore joints when taking anastrozole

I understand completely what you are saying as it is affecting me in quite a negative way too.  At the moment I intend to carry on with the Anastrozole, but time will tell.......it may come to a time when I take your approach and decide I want my old, pain-free life back.........I wish you well !  Brenda

raekozlowski
Member

Re: Pain relief for sore joints when taking anastrozole

 I  have decided to stop taking the anastrozole. I am not willing to impact my current  good quality of life, with chronic pain, for a reduced likelihood of cancer recurrence. I am going to make sure I have mammograms once a year and deal with what might happen, rather than deal daily with pain or taking medications to mitigate side effects from anastrozole. I will explore to see if there are any natural estrogen blockers and I will in general be midful of maintaining a healthy lifestyle, but chronic pain is not an option that I will choose.

Brenda S.
Member

Re: Pain relief for sore joints when taking anastrozole

 

 I'm so pleased to have found this site as I am 11 months into my Anastrozole experience and feel as though the aches are getting worse. Definitely worse at night and first thing in the morning. Keeping active helps but it just takes more willpower to get started!  I'm 68 and still go to gym twice a week and do lots of gardening, but it is definitely harder to feel motivated when aching so much. I find it's mainly hips and hands that are affected, and I have now got trigger finger too. I feel that all this is a small price to pay to remain cancer free, but I can understand why so many people decide to come off the Anastrozole as I feel so different from my pre-A days, and I too am putting on weight, which is really annoying!   Very reassuring to know I am not alone in all this though!  Thanks to all who have shared their experiences.

Brenda S

raekozlowski
Member

Re: Pain relief for sore joints when taking anastrozole

Hi, I have been taking anastozole for 5 weeks and just this week I have started to feel shooting pains in the inside hinge of my elbow. there doesn't seem to be a weight trigger just randomly, when I lif my fore arm, eg to put in an earring, the shooting pain makes me gast. What is the general consensus? could this be from the anastozloe? has anyone had the same thing? Does itget worse? I would so much appreciate any feedback I can get, Thanks, Rachel

Scotty
Member

Re: Pain relief for sore joints when taking anastrozole

Just about to start on anastrozole, after surgery and TC + Herceptin. I already take pain meds  for existing long standing problems. For nerve damage, I have 10/20mg of amitriptyline at night, and for bone pains, I have 60mg of  nefapam 3 xday. I hope this does the trick for any extra joint pains as I can't have any anti inflammatory drugs due to previous existing renal issues. 

scavalcante
Member

Re: Pain relief for sore joints when taking anastrozole

Hello, 

 

I visited this site for the first time this morning while researching Anastrazole (Arimidex generic). I was amazed to see your post. I too, thought I was doing well, until the joint pain kicked in. I have been taking Naproxen but to little relief. 

 

Please let me know how things work for you. 

 

Staci 

joyce11
Member

Re: Pain relief for sore joints when taking anastrozole

I've not visited this site for some time and have just found this thread. I have been on anastrazole since January and smuggly thought I was doing quite well until last week when the painful joints kicked in. GP has already put be naproxen + omeprazole as we assumed increased knee pain was wear and tear but now have random joint pains and a trigger finger.Trying paracetemol before going back to GP. Wine and gin work wonders but the liver might object to that longterm lol.

 

Joyce

meschief
Member

Re: Pain relief for sore joints when taking anastrozole

Acupunturevis awesome and really works, but INS will only cover 5 a year and breast cancer sites recommend one a week..

Magical_Moon
Member

Re: Pain relief for sore joints when taking anastrozole

Hi Cils,

I've been wondering how you have been getting along since I last heard from you on the Forum. So sorry to hear you are having really bad joint pain at night. It is awful when you can't escape the pain as you lie in bed trying to get to sleep.

I am allergic to Ibruprofen, Codeine, Tramadol, anti-inflammatories etc. therefore suffered terrible pain for many months until my GP found an alternative medication that helped to reduce my pain. She prescribed Amitriptyline (for neuropathic pain) which is given in low doses. At first I took 10mg at night but the pain was still at a severe level so she increased the dose to 20mg which helped. However, I found that 25mg was the strength that gave me the best relief from pain which enabled me to have a better night's sleep. I've heard from other ladies on the Forum who have taken it for pain relief and Amitriptyline worked for them too. Some got pain relief with 20mg, it depends how you react to it.

My pain has not gone completely but compared to how severe/unbearable it was, Amitriptyline has been a life saver for me.  It does make me feel sleepy after taking it at night before bedtime but that's fine by me because I want to sleep and not lie awake most of the night feeling pain.

Cils, Tamoxifen frightened me too!  I had a terrible reaction to it. Awful cramps in my legs, body overheating to an alarming degree and the dull period like pain you described. I was relieved when the oncologist switched me to Anastrozole because the possibility of having a DVT, stroke or womb cancer scared the living day lights out of me.  I just felt weird on Tamoxifen. The medical scientists have proved Tamoxifen is not as good as Anastrozole so I would rather take Anastrozole to prevent a recurrence.

How are your eyes?

I had my right eye cataract removed five weeks ago and everything has healed fine. At least, both my eyes are OK now. No longer have to live with cataracts and poor eyesight.

Wanted to tell you that I made a mistake about the tiny pellet the nurses put into my eye prior to surgery. The tiny pellet is to dilate your pupil (some hospitals use dilating eye drops). The local anaesthetic is put into your eye (via eye drops) by the surgeon in the operating theatre. Sorry for making this mistake Cils, I got confused and wanted to let you know.

Take care and maybe ask your GP if you could try Amitriptyline to help with the night pain. It's worth a try and if it doesn't work you can always stop taking it.

Big hug.

M x

 

cils
Member

Re: Pain relief for sore joints when taking anastrozole

hi magical moon

i too am suffering real bad joint pains and seems more so at night.even when you lie on your side it seems to be compresing my joints together. im up now at 12.05 in the morning typing this for comfort.I have taken ibroprofen to see if helps.what did your doctor recomend to help you with this problem?

I stopped taking anastrozole and took tamifexin and i had very strong dull pain like period pain , it frightened me so after 8 tablets i stopped (thinking of womb cancer). Back on anastrozole.

please let me know your thoughts and anyone else too , so glad of this site

Regards cils......

Shelley70s
Member

Re: Pain relief for sore joints when taking anastrozole

This drug is absolute poison and should be banned. I had unbearable joint pains and felt 20 yrs older. My onc changed me to tamoxifen after 3 months. Hands still hurt but not as bad. I only hope I don't have permanent joint pain in thumbs from Arimidex.
Magical_Moon
Member

Re: Pain relief for sore joints when taking anastrozole

Hello Kamall,

From my experience, up to the six months marker the pain had reached the highest level and was constant both day and night in all my joints.  It was unbearable and dominated my life.

I have suffered from severe migraines most of my life and always considered myself to have a high pain threshold.  But living with chronic joint pain daily wears you down. If my GP had not found a solution to reduce the severity of my pain, I would not have been able to persevere with taking Anastrozole.

If you have been taking Anastrozole for five months, I would think that your side effects will have reached their maximum now.

Hope you can find a solution to ease your joint pain.

Very best wishes.

M x

 

Kamall60
Member

Re: Pain relief for sore joints when taking anastrozole

Hi have now been on anastrozole 5 months and joint pain has definitely increased. Struggling to go at the same pace as I used to but definitely better to keep moving. Now getting pain at night as well. Who would thing turning off the oestrogen would have such an effect! Does the joint pain worsen the amount of time you're on Anastrozole,  as still a long way to go?

lexilou3
Member

Re: Pain relief for sore joints when taking anastrozole

Hi Fearless,
I struggled with different brands and leg pains, finally asked onc to recommend the drug in its trial fornat ie Arimidex, this cganged my quality of life, has enabled me to increase my wirking hours. Still some stiffness, but got to be worth a discussion. Some dismiss brand variations, but my pharmacist was fab, and my local support group. Good luck.
LL xx
Fearless
Member

Re: Pain relief for sore joints when taking anastrozole

I was diagnosed with breast cancer late October, with lumpectomy, and SAVI brachytherapy in November and December. Due to my mother's exposure to DES drug during her pregnancy with me, both of us got breast cancer, so anastrozole was recommended. Very few side effects during the first 3-4 months, but now I am hurting. Severe pain in right wrist and fingers, and right ankle site of a previous sprained ankle. Waking me up at night. I'm too young (relatively speaking) to feel this crappy. Can anyone tell me if it is worth it? Without meds supposed to have 80% chance of "freedom from cancer" with med 90%.

BrendaB
Member

Re: Pain relief for sore joints when taking anastrozole

Hello again Magical Moon, thanks so much for your informative reply. It does help somewhat knowing other people are going through the same problems. I think many of us are stuck between a rock and a hard place with these drugs. 

My allred score was the same as yours so I know it makes sense to carry on with Arimidex but my body is shouting STOP!!  Well done you for carrying on, I admire your tenacity! I will plod on for now and hope that symptoms will improve.

Thanks again for replying and the hug! 

B x

feistyflora
Member

Re: Pain relief for sore joints when taking anastrozole

I have been on Anastrozole for about two years and I too enjoy keeping fit. I had been experiencing a great deal of repetitive  pain in my wrist, inside my elbow and my arm generally but then I stopped trying to include lifting small hand weights during my daily exercise routine and it made a huge difference because I don't have any pain whatsoever now. I am convinced that using even tiny weights was aggraving the problem. I am also careful to avoid carrying heavy shopping bags too.   

Magical_Moon
Member

Re: Pain relief for sore joints when taking anastrozole

Hi Lisa,

Sorry to hear you have been having unbearable joint pain. Even though we know we have to take Anastrozole to reduce the risks of having a recurrence, it does seem unfair that some of us are burdened with awful side effects.

I struggled for about seven months with severe joint pain every day where pain dominated every minute. I normally have a high pain threshold but when it was constant I found it unbearable. My sleep was disrupted through the pain (woke up every two hours).

My GP prescribed me various codeine based drugs to find a solution but none worked, they just gave me severe migraine. Unfortunately, I am allergic to anti-inflammatories (e.g Voltarol, Ibruprofen) and most strong painkillers (Tramadol, Co-Codamol, Co-dydramol etc.) I didn't want to try Morphine because of my allergy to opioid drugs.

After seven months of trial and error, I switched to another GP in the practice. At last, she was able to help me. I was prescribed a low dose of Amitriptyline (used for neuropathic pain). Started at 10mg, then increased to 20mg and finally found that a dose of 25mg helped to reduce my severe joint pain. For the first time in ages, I was able to sleep for four hours before waking up. A miracle.

Amitriptyline has been a life saver for me. My joint pain has not gone completely but the intensity of pain has reduced by some degree and now I only feel pain when I move. Before all my joints ached badly even when sitting still of lying down.

I've been taking hormone therapy for two and half years now and Amitriptyline has definitely helped me to remain on Anastrozole.

There was a recent thread about Amitriptyline, here is the link.

 https://forum.breastcancercare.org.uk/t5/Living-with-breast-cancer/Amitriptyline-side-effects/td-p/1...

Good luck finding something to relieve your pain.

Big hug.

M x

 

succorraharper
Member

Re: Pain relief for sore joints when taking anastrozole

Hello Everyone,

 

I was diagnose January 14, 2015 and I've been taking anastrozole since October 2015 before that it was raxifene but I couldn't take that anymore the side affects were too much. My joint pain is sometimes unbearable with anastrozole but I know I need to continue to take it.

 

I execise two to three times a week and it does work but nothing can touch the pain during the night sometimes.

 

Any suggestions for joint pain?

 

Thanks,

 

Lisa

4th sis
Member

Re: Pain relief for sore joints when taking anastrozole

Thanks for the support! I never really thought of it that way and it helps! I guess it's all about putting one foot in front of the other — I find I grunt less on my tenth step.
4th sis
Member

Re: Pain relief for sore joints when taking anastrozole

Thank you, Christine! Congrats on your all clear!!

Magical_Moon
Member

Re: Pain relief for sore joints when taking anastrozole

Hello Christine (Rubycat),

Fantastic news about your all clear, NED result.

Plus, many congratulations on your amazing achievement with weight loss. That must make you feel very proud of yourself. A fantastic result.

Peace and Positivity,

M x

Magical_Moon
Member

Re: Pain relief for sore joints when taking anastrozole

Hi 4thsis,

Good to hear that you had a positive result when you saw your oncologist. Thanks for joining the thread. The more the merrier.

I've gained weight too since taking Anastrozole mainly because I am less active due to my chronic joint pain. It's really irritating how a tiny, white,1mg pill can cause havoc with your energy levels and waist line.

The only advice I would offer is to be kind to yourself because your body is now having to function with hardly any oestrogen floating around your system. Our bodies are super sensitive and finely balanced and they've had a huge shock. It is a big ask expecting any oestrogen deprived lady to go pumping iron at the gym. How would a man feel if he was deprived of testosterone?

I'm a 100% certain that if I could take HRT again, I would be bouncing around like Tigger the Tiger with a downsized body. If only! Such happy memories of HRT and a body topped up with oestrogen.

Big hug,

M x

 

 

Magical_Moon
Member

Re: Pain relief for sore joints when taking anastrozole

Hello Brenda,
Thanks for joining this thread and a warm welcome to you.
Yes, you are right. Anastrozole is mainly given at 1mg per day. Like you say, it is one dose fits all. However, this recommended dosage has been proven (through significant clinical trials including the ATAC trial) to be very effective at preventing BC recurrence. I've found hardly any scientific research information advocating a lower dose, such as 0.5 mg but have seen reference to a 10mg dose.
As you have already taken Letrozole for two months before Anastrozole, the only other alternative aromatase inhibitor you could try is Exemestane. This second generation aromatase inhibitor is different to Anastrozole and Letrozole (both non-steroidal and reversible) because it is a steroidal drug and the aromatase inhibiting mechanism is 'irreversible'. You may be interested in trying it before stopping your hormone therapy altogether but it could cause the same side effects. I was offered the switch to Exemestane when I was thinking of stopping Anastrozole but didn't because of the drug's 'irreversible' and steroidal properties.
Not quite sure why you would consider having oestrogen levels checked?
You have been taking aromatase inhibitors for five months, therefore your oestrogen levels will have already been significantly reduced. From what I have found out, the scientific evidence says that with the recommended daily dose of Anastrozole 1mg, estradiol is reduced by approx. 70% within 24 hours and by approx. 80% after 14 days of daily dosing. This percentage has been quoted even higher in some scientific articles stating that aromatase inhibitors can reduce circulating oestrogen by about 98%. (Yikes! No wonder all my joints are stiff and painful).
Unless you stop taking Anastrozole until your body is 'clean' of Anastrozole, having your oestrogen levels checked now would seem inappropriate.
Do you know what your Allred score(ER+) was at diagnosis? Mine was ER+ 8/8 which is why I continue to take Anastrozole despite the chronic joint pain. I've now got a mere 2.5 years remaining on my 'Anastrozole sentence'. (Sigh!)
The higher your ER+ score the more beneficial hormone therapy.
Must admit, I really struggled on Anastrozole for the first seven months and even asked my breast surgeon could I stop because the joint pain was unbearable. At the time she encouraged me to continue taking it for at least two years because this was the most critical time when a recurrence could happen. This made me too scared to stop.
It is a very personal decision whether to stop. I still haven't found the courage to quit my hormone therapy. My body wants to stop but psychologically I still need my 'comfort blanket'.
Take care and keep plodding on until you know what's right for you.
Big hug,
M x

rubycat
Member

Re: Pain relief for sore joints when taking anastrozole

Hello 4th sis - yes, agree that this site is fantastic.  Well done for the all clear - it's a great feeling isn't it - I had my all clear first mammo letter yesterday.  I've found anastrozole really hard to lose weight with - prior to my surgery last year I had been with Slimming World and lost over 6stone easily within a year. After surgery it took me well over a year to lose the remaining 2 stone - it was really difficult.  Slimming World is great, but it really is just healthy eating - but I do believe taking the AIs make it much harder to shift the weight.  Good luck in whatever you decide to do.  Christine xxx

rubycat
Member

Re: Pain relief for sore joints when taking anastrozole

Hello BrendaB, sorry you're having joint pain too.  I've been on anastrozole since last July - and have really found that different brands have provided hugely different bone aches.  Started on Accord, that was ok, then chemist supplied Teva, which got worse and worse with constant back ache and leg pains.  I also have osteopenia, so taking Adcal D3.  Now had a couple of weeks on Zentiva brand and WOW, WHAT A DIFFERENCE - even better than the Accord brand.  Although still slightly achy on getting up, (in morning, or from sitting) that soon disappears and I feel PAIN FREE and can walk about with no aches and pains (haven't tried running yet - not fond of too much exertion!)  Have you tried different brands for a month - anything is worth a try isn't it when these bone aches can floor you? Christine xxx

BrendaB
Member

Re: Pain relief for sore joints when taking anastrozole

Hi Magical Moon, this is my first forum post so hello everyone! I am having awful side effects from Anastrozole. I was on Letrozole for two months post lumpectomy, chemo and radiotherapy then switched to Anastrozole which I have been taking for three months. 

I, like yourself, believe that some people are much more sensitive to oestrogen deprivation than others and looks like I am one of those. Am I right in saying that there is only one dosage for this drug? It's as if one dose fits all and this just dosn't seem right at as we are all different. I wonder if it would be worth having my oestrogen levels checked?

I read somewhere recently than more than half the patients on aromatase inhibitors stop taking it before their alloted time and I can well see why. Must admit I am seriously thinking of stopping the drug and taking my chances but the thought is so scary and I am plodding on for now.

B x

4th sis
Member

Re: Pain relief for sore joints when taking anastrozole

I'm so happy to have found this site!

 

It's been 18 months since I was de-lumped. I went to my oncologist yesterday and all is good (thank God) but these pills! Ugh! Before BC, I was a gym rat and proud of my strength - but it's been so hard to get back to it. I really thought after going through all of this crap that I would have a new lease on life but instead I find myself making excuses and just plain feeling worn out! I should probably add that I've gained 16lbs since the surgery. Any advice would be welcome!

Magical_Moon
Member

Re: Pain relief for sore joints when taking anastrozole

Hi Lisa,

Welcome to this thread. Feel free to have a rant anytime. It's good to express your true feelings about living with joint pain. All of us here can empathise because we have bad joint pain too thanks to Anastrozole. It really sucks having to take this hormone therapy when it gives awful side effects. But if it keeps Mr BC Nasty from returning, we just have to get on with it and have a rant every now and then.

Take care,

M x

Bigbirdx
Member

Re: Pain relief for sore joints when taking anastrozole

What a relife to realize its not just me having the joint pain, i can cope with the rest but the joint pain is really bad. I'm 43 and feel like im 70, my mates just smile, i guess they dont understant truely what its like and think i'm boring cos i dont want to go to the pub after work. I'm knackered thats why, yes i say i'm ok but only because its difficult to explain how painful it can be. if i sit for more than 10mins i seaze up!!!.

i have read some of the other comments and i am on the teva brand too and my surgeon said well dont take them too.Its so confusing of what to do for the best.My doctor has written to the surgeon to ask advice too, if the doc dont know then how am i supposed to know Grrrrrrrrr

rant over.

 

Hi everyone i'm lisa aka Bigbird, got BC in sept, op nov, anostrazole for 5mth

Magical_Moon
Member

Re: Pain relief for sore joints when taking anastrozole

Hi MoH,
From my pathology report, my breast cancer was a very rare 'pure special type' (90% special components) Invasive Micropapillary Ductal Carcinoma. When researching for more information, I found that this particular sub-type of Invasive Ductal Cancer is very aggressive with a high rate of spreading to the lymph nodes and vascular system.
Both my breast surgeon and oncologist reassured me that, even though I had a very rare type of invasive cancer, the treatment was no different to any of the others breast cancers. Luckily, my BC cancer was early stage, Grade 2, no lymph nodes affected, so had lumpectomy, radiotherapy and have been given hormone therapy for five years (Anastrozole).
My understanding is that being ER+ is definitely a bonus, mainly because you can be treated with hormone therapy which helps stop any potential BC cells feeding off oestrogen. Reducing oestrogen and stopping BC cells from growing improves your prognosis, but a good prognosis is also dependent other factors too. The key ones being, the size/grade/stage of the tumour when first diagnosed and if it had spread to lymph nodes.
I don't think it is that straight forward removing both breasts to get a better prognosis, especially if the other breast doesn't have signs of BC. My breast surgeon was very much for breast conserving surgery if circumstances were favourable, and she would not have recommended removal of a healthy 'opposite' breast. That is why the majority of ladies are given hormone therapy to prevent a recurrence and also to help reduce the chances of a primary breast cancer in the other breast.
The circumstances where ladies have both breasts removed to improve their prognosis (where one may not have BC) is when there is a family history of the BRCA1 or BRCA2 gene.
Take care,
M x

MoH
Member

Re: Pain relief for sore joints when taking anastrozole

Magical Moon...what was your diagnosis? what steps did you take to become breast cancer free?  Is it true that if you are her2 negative and estrogen positive that your prognosis is good? Is it also true that if you have breast cancer in one breast that it is better to have both removed?

 

Inquiring mind...

Magical_Moon
Member

Re: Pain relief for sore joints when taking anastrozole

Hi MoH,

Congratulations on your imminent retirement.

I think the less stress you have the more you are able to cope with intermittent pain. You have more time and space to listen to your body and do pleasant things to relax. Time to find alternative ways to help with the pain  eg. Yoga classes, Pilates, or just a gentle stroll in the fresh air.

Teaching is a demanding job and having pain at work must add to the stress.

Enjoy your retirement and your new freedom.

Peace and Positivity,

M x

MoH
Member

Re: Pain relief for sore joints when taking anastrozole

Hey Magical Moon...love the name.

 

Thanks for letting me vent. I'm feeling much better but don't know why. I am so empathetic to others who are cancer survivors. I love this forum and enjoy reading how others are doing as well. 

 

I do have one question: I will be retiring in a month (teacher 25 years). Do you think that not working will alleviate some of the stress and intermittent pain? Anyone?

Magical_Moon
Member

Re: Pain relief for sore joints when taking anastrozole

Hi MoH,

Welcome to the Forum and congratulations on being BC FREE for almost four years! Fantastic news.

Sorry to hear that you have started to get unpleasant side effects.  It's no fun, as many of us here would agree.

Feel free to have a vent.  It does everyone good to have one especially with ladies who know exactly how you must be feeling.

Pleased you joined this thread.  Post whenever you feel like it.

Sending you a big hug.

M x

MoH
Member

Re: Pain relief for sore joints when taking anastrozole

I will be breast cancer free 4 years in May of this year.  I have been taking the Arimidex for three years.  Until now, I will doing okay.  But for the last three months, I've been having strange ankle, lower leg, inside thigh and wrist cramps that are horrendous.  I am happy to have found this forum.  I cried as I read your words realizing that we share so many of the same symptoms.  It's actually a relief.  I paced the hallway last night three separate times because my body became so rigid.  Scary stuff.  I was not happy when I woke up this morning because the cramping is still here though intermittent.  Whether I walk 30-60 min a day or not, I have the same seize up nights.  Thanks for letting me vent.

cils
Member

Re: Pain relief for sore joints when taking anastrozole

Hi magical moon ,

thank you so much for your reply your layout of questions and answers are very percise and methodical to the point which i like and clear and understanding.you have enlightened me to questions i did not know and helps me to understand what to expect.

It is nice to know someone who has experienced some thing i might have to have.(will have) in the near distant future .

It is true then that you can get cateracts from taking anastrozole(aremidex)?

Just another thing we have to go through and cant get out of it.

my vision in left eye is slightly more blurry in long sight than the right ,if i put my hand over my right eye glass for reading the left eye is blurred or slightly blurred writing.only had eye test and new prescription 2 months ago.

suppose the eye sight will go both long sight and short sight at the same time?

as you say if you got cateract in eye already it will get worse gosh not looking forward to it at all.

at least its something they can fix.

take care magical moon will speak soon xx

Magical_Moon
Member

Re: Pain relief for sore joints when taking anastrozole

Hi Cilla,

The thought of having surgery on your eye is scary. I was very anxious but, now I have had my first eye done, I can reassure you that it is a very speedy, painless operation.
How long was op?
Only 10 minutes. It was incredibly fast, I asked the nurse to time it for me.
Did it hurt?
No. There is no pain. You are aware of something pressing on your eye intermittently which is caused by the small surgical equipment used to hold back your eyelids.

Will it grow back?
No. The cataract is the clouding within your natural eye lens. During the operation your natural 'clouded' lens is removed from the lens capsule inside your eye and replaced with a new artificial lens implant. The artificial lens implant will not develop another cataract. However, sometimes the natural lens capsule can become clouded a few months or years later. The risk of this happening is 1 in 10 patients but it is easily rectified by a simple laser procedure to correct it.
How was it when surgeon was attending to your eye (scary)?
Yes, I was scared when I laid back in the operating chair because I didn't know what to expect and was hoping the anaesthetic had worked. However, the whole procedure took no longer than 15 minutes. Part of this time (5 minutes) was used to clean around my eye with antiseptic solution and place a sterile sheet over my face. There is a gap in the sheet over the eye being operated on. The other eye is covered up. A fan placed underneath the sheet blows cool air over your face.
The best advice I can give for during the operation is to concentrate your mind on looking at the swirling, coloured lights you can see. You CANNOT see any instruments the surgeon is using or feel them touch your eye. Everything is blurred because of the local anaesthetic and also from the sterile liquid which is swished into your eye. The liquid causes the swirling lights effect.
DO NOT think about what the surgeon is doing. I did for a fleeting second and it was scary and a huge mistake. Think of lying on a beach, looking at the swirling lights, George Clooney, eating your favourite chocolate, etc. Just about anything but NOT what the surgeon is doing to your eye!
How did they freeze the eye?
A tiny pellet (the size of a grain of rice) was placed inside the lower lid of my eye. This contained the local anaesthetic and the nurse put the pellet in about an hour before the operation.
Can you see much clearer?
Yes, within 24 hours your vision comes back well enough to get around. Colours are much brighter. I had to wear my sunglasses the following morning because the light was too bright. Although the lens implant has a distance vision prescription suited to your specific eye measurements, I still need an additional prescription glasses lens to get 20/20 vision because of the shape of my cornea. You have to wait six weeks post surgery before having an eye test if you need glasses.
How bad had it become before I had cataract surgery?
My cataract was very fast growing. My ophthalmologist found the early stages of one in my left eye in December 2014. Six months later (August 2015), it was much worse. By then, I had double vision and very poor visual acuity which could not be corrected by wearing a prescription lens. My balance was affected because I could only see clearly with one eye. I felt unsteady as if I was falling over which made me feel sick and dizzy. Going down stairs/steps was awful.
When the symptoms get so bad to affect your day to day living, driving etc. your ophthalmologist will be able to refer you for cataract surgery.
Cilla, I agree it is another hurdle to go through but it is such a relief to get your eyesight back. Once a cataract is detected, your vision will only continue to get worse. As soon as your ophthalmologist is able to refer you for cataract surgery, tell him you want to go ahead with surgery and get on the NHS waiting list.
From referral in early August 2015, I waited just over three months for my surgery date on 24 November 2015. Then, four and half months waiting for my second cataract surgery on 12 April 2016.
If you have any more questions, just ask. Happy to help.
Peace and Positivity,
M x

cils
Member

Re: Pain relief for sore joints when taking anastrozole

high magical moon lovely to hear from you again just a few questions on your cateract operation

  • how long was op
  • did it hurt
  • will it grow back
  • how was you when surgeon was attending to your eye (scary)
  • how did they freez it (needle in eye}
  • can you see much clearer
  • how bad had it become before you could have it done

was yours afast growing cateract what time span did it grow in

soory about questions its just another hurdle to go through.Woke up still stiff in joints and my back but dont let it get me i get moving to get it loosend up.i bet yoga would be good.just hope it goes when tablets finish another 2yrs to go.

speak to you again magical moon 

regards cilla........:

Magical_Moon
Member

Re: Pain relief for sore joints when taking anastrozole

Hello Cils,

Lovely to hear from you again.  Hope you are keeping well despite having to live with the ubiquitous side effects of Anastrozole.  I'm still struggling with chronic pain and associated fatigue but haven't plucked up the courage to stop taking Anastrozole for a month to see if my pain reduces.

From the research I have done, I've not found a definitive answer about the chances of recurrence after 5 years of Anastrozole.  The NHS Predict tool does give survival percentages at 5 years and 10 years taking and not taking hormone therapy but these percentages are estimates for general guidance and not case specific.

http://www.predict.nhs.uk/predict.html

The possibility of a recurrence appears more dependent on the size, type and stage of an individual's original BC diagnosis.  Although Anastrozole will help ladies who had a high ER+ score, it is only part of the bigger picture.

To be honest, I would love the medical research scientists to give us definitive statistics but nobody is going to be that bold.  A BC diagnosis can be like a lottery and a recurrence can be too.

Sorry to hear you have developed a cataract.  The cataract surgery on my left eye went very well last year in November.  On 12 April, I will be having surgery to remove the cataract in my right eye.  Please feel free to ask me any questions.  I am more than happy to help you.  I live in England and my eye surgery was done through NHS.  My eye surgeon has a local private practice but is a consultant at my local NHS hospital as well.

Peace and Positivity,

M x