Exemestane and Joint/Muscle/Tendon Pain

I suck not duck!  Interesting auto-correct.

Unfortunately that is a reality of where we are.  No-one realises how devastating it can be but we do it in hope that we won't get a recurrence.  And yes, @kmakm was magnificent!  

An easy update on my liquid fish oil experiment...  It's only been a few days so I'm not getting excited yet as it may just be a normal lull in proceedings but I do think there has been an improvement particularly in the lower half of my body, tailbone down.  My hands (where the arthritis symptoms have really set in are a bit better but still tender).  I've been taking 15ml at around 6am - the pain starts creeping back in the evening but quite possibly I'm being more active during the day.  I have found myself stepping it out at work ( as opposed to shuffling) and I was able to get down to floor level and up again yesterday without too much palaver.  It may just be in my head, but as my daughter says, who cares if it's working?  I will continue with this regimen and see how it goes.  I may mix up the dosing at a later stage if need be to try that.  And yes - it does taste unpleasant.  I throw it to the back of my throat and then duck on a sugar- free mint afterwards!  Anyway, here is what I'm taking.  It cost $13-14 from the supermarket and is the one commissioned by the professor associated with the group who are releasing the paper.

I had an extra long visit with my Breast Surgeon of recent times and he asked about how I was going with the AIs as these are administered by my Oncologist.  I mentioned I was now on my third; briefly said why and that my body seems to have adjusted a little better.  His comment was regardless of which one you are prescribed you will suffer side effects and that in time the body does adjust.  It has been 4 years for me and the adjustment is happening.  Yes I know that is a long time to go before relief comes however hopefully for others it comes a lot sooner.  Now I just need to rid the bone pain in the legs which seems to heighten itself at night as I head into sleep!  This is the only side effect that bothers me now!

Take care and best wishes as you try to find the solution.

    

@kmakm I have watched that podcast and you were awesome! You absolutely nailed exactly how I feel about AIS, their side effects and the reaction of Doctors  when asking for help with the pain.  I refuse to give up my search for a solution and I also refuse to stop taking them given my history.  I could not stand psychologically to stop and then get a reoccurrence.  Even though I know that is small likelihood I would definitely blame myself if I didn’t stick it out.  I’m too young not to keep trying.  I have sent the link to that podcast to friends and family who say to me there must be something they can do.  It is also an opportunity for me to have them hear from someone else how horrible it is because like you I feel like a whinger and I kniw they just don’t understand how painful it is some days.  My ex-boss sure didn’t.  She told me I just needed to get over it!

@"Beryl C." @Artferret I concur with both of you. With sadness. There seem to be so many people who suffer these dreadful side effects, but so little being done to alleviate them. Even the BCNA webinar I took part in earlier this year, failed to address these issues. I raised so many of the side effect issues with the two eminent experts, as I was requested to do, and they were completely ignored. Not one was answered.

My reading tells me that at the five year mark only 30% of people are still taking their AI. With a 70% drop out rate, you'd really think the medical community would be looking at ways to make taking these drugs easier.

I too now focus on managing the pain. It's expensive, debilitating and embarrassing. I'd get angry more often if I wasn't so fatigued...

After 18 months on letrozole my body and me, finally cracked it and i requested a 2 month break. It took 6 weeks for all the aches and pains to go. I am at the gym 3 times a week, for nearly 2 years now, doing cardio and resistance training, i walk our dog everyday +2km and i see my osteo every month for an hour and believe me she needs the hour. I use ice, heat, massage with spiky balls, foam roller and my husband's hands! I use nurofen or panadeine sparingly when it gets too much but have to be careful with painkillers as they can effect my dodgy digestive system. I don't take any other supplements. I have a less is more principle and this seems to work for me at the moment. I also largely follow a low cholesterol diet.

I don't think there is anything that can truly help combat the side effects of the AIs it's more a matter of finding ways to cope that suit you best. There is no one method. Oestrogen has its finger in so many pies in our body particularly in the joint and muscle area. Lower it down it almost nothing...

It would be interesting for researchers to gather together a group of people who don't have these side effects whilst on an AI and try to find out why. Is it their metabolism, age, diet...who knows but i don't know that anything like this has been done. We are just expected to put up with it. 

Best of luck with finding ways to cope @MichelleGS

I took arimidex for four years, starting June 2011 and changed to anastrozole three years ago. I've been having Herceptin infusions for seven years - No.114 due this week. Physically things were ok until 2013, I.went to stand up one night and the pain in the soles of my feet was excruciating. I was able to continue working until late 2017 as there were good days and bad days, for the last two years the pain has been very bad most days and I use a walker. (I'd turned 70 so retirement was ok). I've tried about 10 different drugs including Celebrex, Lyrica, Endep, Targin, Palexia, and could fill the bath with supplements and oils. Tried acupuncture, massage sandals, Tens machine, epsom salts baths, hot and cold packs, Reiki etc -I have seen the pain Dr at my treatment hospital three times and when none of the drugs eased the pain he suggested their  two day Pain Management workshop, all very well done but for me the outcome was 'welcome to the new normal and make adjustments'. In summary nothing has made any difference! It has had an impact on my lifestyle. Early this year my GP gave me a prescription for a drug with codeine, I use this very sparingly for events I don't want to miss like a family birthday. As I also have aches and stiffness in various parts of my body, all unpredictable, I take 50mg of Voltaren just before I go to bed and during the day find Panadol Osteo takes the 'edge' off. I find Sketches are the best shoes and as my feet are small I can wear the largest child size and pay 50% less than adult size. I've done quite a bit of research on this although most of the evidence is anecdotal and I have not yet found anything that claims a reduction in pain attributed to aromatose inhibitors. This is a health condition that does need serious research.

I tried Krill Oil but it didn't make any difference to me. I think I'll circle back to it though. I'm a year further on, so maybe something might have changed.

I've heard prednisolone played down a lot and I can understand the reluctance to prescribe it but it was beyond incredible for me.  The problem of course, is that you can't stay on it.

I am hoping that the fish oil dies something (dose is equivalent to approximately 13 capsules) but I'll believe it when I feel it.