has anyone got bone pain in the shoulders through anastrozole tia

When I was on Anastrozole every muscle and bone in my body hurt....

thanks Penny, I had good news from my new boss/line manager, she has got HR to agree they should pay me some sick pay for being off, which is about time too!  And theyve suddenly got excited and want me to go in for occupational health workover and planning for my return - 8 am in the morning and needing a lift isnt exactly the best start to thinking about working, but the nature of my job (making notes and supporting disabled Uni students) means Im now booked to do about one day a week, and Ill be surrounded by future nurses, being trained by very experienced nurses, so if I feel weak and wobbly I should at least feel confident somebody will be able to look after me! Its just nice to feel taken seriouisly and be starting to deal with emails and things again. its like when I had the kids and felt my brain got chucked away with the placenta, I felt so dozy and stupid most of the time I've been off work I dont know what Ill be like at work! anyway, at least its a start back to new normal.

Good for you!  Your humor just knocks me out.  I'm not funny, but I LOVE to laugh!!!!  I'm thinking of you and what a treat for the students to have you there....

a hundred hugs and happy thoughts, Paige (I use my middle name)

Yes, felt like a knife was in my right shoulder blade, painful hip, wrist, fingers, knee and toes! Also dreadful sweats where I literally poured sweat day and night. Plus depressed as hell. Also continence problems!  Breast Cancer nurse suggested I come off for a month. Week 4 and feel so much better. Still have sweats but they're more manageable. 

I’m new so I apologise if I’m posting in the wrong place!

I had a lump and sentinel node removed followed by Radiotherapy three years ago. Since then I have been on Anastrozole. My finger joints are very painful and I struggle to bend my fingers or to grip. I was seen by a rheumatologist 2 years ago who told me that the damage had been done and that there was no point in coming off Anastrozole.

I’m now really struggling with back and hip pain. My Dexa scan three years ago was good so they said I wouldn’t need another one. Recently, during lockdown I’ve had xrays and an MRI on my spine which shows osteoarthritis. Could this too be attributed to Anastrozole? It hadn’t crossed my mind until yesterday when I saw this thread!

I’ve been in agony and was even given Tramadol! (Which I returned to the pharmacy after a few days because of side effects). I’m still in a lot of pain.

What do you think?

I'm sorry, impossible to advise. All I know is that my aches and pains are so much better now off the Anastrozole. I've no intention of going back on it. I was especially worried about it affecting my bones as I have arthritis and scolosis. All I can suggest is to speak to your consultant or cancer nurse. I'm very sympathetic as I really struggled on the medication. I'm so much better off it and I'll have annual mammograms. Good luck. 

Hi Suemary,

so sorry to hear about your experience. I had a mastectomy 4 years ago, didn’t require anything other than being put on anastrozole. I wasn’t given a DEXA despite having scoring 9 on the FRAX test but told I would be well monitored. The side effects were very bad for me - anxiety, intense flushes and pain. I researched extensively - the Australian NHS website was very helpful. I then consulted my surgeon as to what coming off the drug would do to my likelihood of my cancer returning. I weighed this up with the likelihood of the drug causing osteoporosis to me and my quality of life. I decided to come off the anastrozole after having taken  it for year. My symptoms reduced dramatically when I came off them.I made some pretty radical lifestyle changes to rebalance the odds in my favour. It’s a very personal decision.

A year later I had some pretty painful musculoskeletal problems - shoulders, neck,hips and lower back. I got a DEXA scan eventually when I fractured ribs doing simple stretching exercises to release chest tightness.These showed that I was osteopenic with one hip much worse than the other which an X-ray confirmed  will need a replacement at some point. I cannot say if my year on anastrozole caused this - it will not have helped. I did not have any help from my cancer specialists to get the DEXA. Perhaps because I had stopped taking anastrozole. 

It is not an easy choice but is ultimately yours to make with the best advice you can obtain. Your consultant should be able to give you figures for what your risk of cancer recurrence would be. It is certainly worth finding out your own facts and figures as to the adverse side effects of anastrozole or any other of the drugs you may be offered. The anastrozole is certainly extremely effective at preventing cancer recurrence according to the statistics I found in my research.

I have found diet, exercise - Pilates classes, swimming (when available!) and walking help to maintain what I have be as pain free as is possible. I also have a very good osteopath who had me diagnosed, spot on, before my DEXA and X-rays were taken. She helps me with hands on physio and the correct exercises to strengthen and maintain muscles - I am greatly missing her during the lockdown. I did try  NHS physio, they were as helpful as they could be but ultimately  but they weren’t   hands on or specialised enough to help me. Whatever your decision on the anastrozole I would recommend that you try to access some professional Physiotherapy . Pain medication can help initially but the right physio and exercise can keep you as pain free as possible with the minimum of painkillers. Physio seems to be online at the moment but hopefully that will change soon.

I wish you the best of luck.

WOW KiWiWife such a great description

I had a mastectomy 5 years ago and will begin reconstruction next week.  I stayed on Anastrozole a total of 2 1/2 years, a break after two years and then quit short of the recommended 5 years.

i agree with excercise, healthy eating and I drink aloe and lots of great supplements.

I agree, a personal decision....

Hi Penelope1

Good luck with your reconstruction, I hope that it all goes well and that you will be pleased with it. We take a lot of things for granted and only miss them when they’re gone! It’s not the same, but it is good that there are options for us - before and after surgery.

Best wishes 

Dear KiWiWife, 

You are so upbeat and informative, thank you for your thoughts.

i really never missed my breast, I was almost 68, widowed.  Anastrozole was so exhausting and hurt so much, a breast was of no consequence, life was.

when I quit Anastrozole, began walking, taking supplements and going back into business with old friends.  Once I felt well, I decided on reconstruction.  The epidemic was just hitting America and my scheduled surgery was canceled.  Now I am set to go, like my surgeon very much.

a few months ago a fellow fell in love with me and I am glad I was decided on my surgery before we met, he did not want me to have it.

There will be pain, a graft is being taken from my back, but I heal well and with the expander then implant, my right breast will be done by 12/2020 and the left breast will be done to match, 1/2021.

i have 2 middle aged, lovely daughters, have had an adventurous life.  Being upbeat and fearless is a gift I am able to give them.

many hugs

I use my middle name, Paige

Hi sue mary and others,

I had a mastectomy in February which went well with no further treatment needed but put on Anastrozole in March.  So have been on it for 4 months and joint pain/stiffness seem to be getting gradually worse, especially my hips.  i am now feeling aches and stiffness affecting me considerably, enough to consider stopping it.  Especially if there is only 1% in recurrence incidence. Interestingly to protect my bone density I was also put on a drug called Iasibon (Ibandronic acid) and was told I would not need a dexa  scan.  
 

What does the Australian study reveal?  
 

thank you all for you help and best of wishes to you all.
 

Hi sue mary and others,

I had a mastectomy in February which went well with no further treatment needed but put on Anastrozole in March.  So have been on it for 4 months and joint pain/stiffness seem to be getting gradually worse, especially my hips.  i am now feeling aches and stiffness affecting me considerably, enough to consider stopping it.  Especially if there is only 1% in recurrence incidence. Interestingly to protect my bone density I was also put on a drug called Iasibon (Ibandronic acid) and was told I would not need a dexa  scan.  
 

What does the Australian study reveal?  
 

thank you all for you help and best of wishes to you all.
 

Hi annechristina,

sorry to hear how the anastrozole is affecting you. If you google long term side effects and efficacy of anastrozole you will get a list of more recent studies which will inform you better of what is being found - it is still a relatively new drug for cancer treatment and not every thing is known. 

It is a long trawl and there’s so much that you really need to look at it yourself to take what information you need to know from the studies and trials. I would look to find out what the findings/side effects are for building bone density before ascertaining the need for this and whether  a DEXA scan to determine your baseline bone density would be more beneficial before you were put on these prescriptions. The more information that you have the more that you will be able to ask your consultant the correct questions so that he/she can give you answers so you will to be able to judge for yourself what treatment is the best for you. For me it was a question of balancing one risk against another - there was nothing that gave me a perfect outcome - and asking myself how I would feel if the cancer did come back. 

I hope this helps 

Hi 

It's always reassuring to hear about other peoples experiences while taking this medication.

I've been taking Anastrozole for just over 7 years.

I have just found out I have high cholesterol and after a recent Dexa scan osteoporosis.

I am coming off the medication immediately.

After reading these posts I have discussed with my husband and have made the decision to stop taking Anastrazole. I have done everything my consultants have advised- double mastectomy, chemotherapy and I'm still having Herceptin injections til April. Throughout, everyone around me have helped me keep a positive attitude.

I thought I was over the worst. Then I started this treatment. After 6 months of taking my daily dose, I have gone from being a fit and healthy 59 year old, hiking for miles and regularly taking part in Body Combat, Dancersise and Aquafit classes, to feeling like an old lady with back and joint aches and pains- my back feels like it is starting to stoop. Not to mention hot flushes, bowel issues, pins and needles in my hands and dry skin. My body has been through enough and I'm not willing to forego 10 years of living a full life for minimal benefit and the risk of osteoporosis.

Took my last one last night. Of course it's a personal decision and everyone must weigh up the pros and cons. I wish you all a happy and healthy 2021 and sending hugs to anyone who is suffering with nasty side effects. And thank you for sharing your own experiences. xx

Hi Sandra-Ann,

 I wish you luck. It is a personal choice - weighing up your own risks versus benefits. I managed 11 months of a 10 year course on anastrozole before coming off it because of very bad side effects. I have no regrets 4 years down the line - other than I wish I had stopped taking them earlier. If I am unlucky enough for my cancer to re emerge in the future, then so be it. I have a life I can live and appreciate now - which I lost when taking anastrozole. I wish you too, a happy and healthy 2021, getting back to the activities you enjoy. 

Best wishes

KiwiWife,

Thank you for your reply. I continue to feel better (after a few days with withdrawal symptoms I think) with much less aches and pains. Glad you're doing well. Life does need celebrating, particularly in these times.

Best wishes from Sandra x

Hi annechristine,

I hope you don't mind me asking but I just started taking anastrozole 4 weeks ago and ibandronic acid almost 2 weeks ago. I was diagnosed in nov 2020, had 6 rounds of chemo followed by smx and SNB on 25th May 2021. 

At my follow up appointment I was told the cancer had all gone but still put on the drugs mentioned above. I too was not given a DEXA scan and when asked was told it is because of the ibandronic acid. 

I have had some side effects since I started the drugs;  muscle pain, bowel problems and a sudden change in my eyesight (which the medical team are saying is not due to the drugs!). Yesterday I had pain in my ankle joints, wrists, hips, elbows and knees. The pain is still here today and my knees are definitely swollen.

Having read the comments from others on these drugs i am considering stopping but as you are the only one who seems to be on the ibandronic acid too, I wondered how you have been getting on. Are you still taking the drugs and have your side effects eased?

Thank you in advance,

Julie x

Hi Julie,

I too experienced very similar symptoms whilst on Anastrazole and so switched to Tamoxifen a year ago and find this much better, hardly any side effects. I am still taking Ibandronic acid.  

Caroline x