Exemestane and Joint/Muscle/Tendon Pain

I took 5 fish oil capsules a day on letrozole and it really helped. Changing to anastrazole was very beneficial for me. I still have slightly stiff ankles but I can again swim with flippers. My back shoulder and wrist pain are pretty much gone.

Thank you @Electra, and everyone above here for your kind words.

@Electa the class you're after is a Yin yoga class. That's the one which holds you in poses for 5 - 10 minutes to work into the fascia. I've done several and I find them amazing (I am not a flexible person). I come out feeling amazing, physically and mentally. I'm in Melbourne and they seem quite popular here. Try a Google search and see what you come up with.

And if you're not put off my medical footage check out this YouTube clip. It's adorably nerdy & informative!

https://youtu.be/1TwAvT_ucjY

K xox

@MichelleGS I am so pleased you raised your issue with daily pain. I have recently obtained a second opinion from a medical oncologist regarding the side effects of Arimidex. I have been able to find ways of managing some side effects but the pain in my legs and feet and constant tiredness have been very difficult. My GP gave me copies of the letters my previous medical onc. had sent after my last visit to her. I found that she had not mentioned the pains I had been having and described the fatigue as mild. I was not happy! My new medical onc. has listened and taken on board what I have told her. Am taking a 3 week break from Arimidex then trying another AI called Aromasin. If my body does not like that then it will be Tamoxafen. 

Your question as to what to try for the pains I began a few weeks ago to increase my water intake which I think is assisting though as I am on a break I cannot be absolutely sure. My reasoning is this. Just as decreasing estrogen dries the skin, mouth and vagina it also dries the inside of our bodies. This is particularly so in the fascia, which is a really important organ in our body. My GP, who had breast cancer, told me about this. I researched the fascia on the internet and found it an eyeopener. I had previously been slightly aware of it in yoga classes where we did prolonged stretches with slow movements to stretch and rid the fascia of toxins. Our teacher advised us to drink plenty of water the day after these sessions to assist the fascia in flushing out toxins and dead cells.

We moisturise our skin with oils. I use Replens for vaginal dryness.  To moisturise my fascia I drink extra water each day. I am considering going back to yoga (had to stop because of shoulder arthritis) if I can find a class which works on the fascia.

It will not take away the problem but it may be another tool in the arsenal. 

Shout out to @kmakm I saw you on the podcast and my heart was uplifted to hear you tell your story and to know that others have the same issues.

I had 1 x 25mg per day for 7 days.  I do understand the dangers of taking it for a lengthier period of time but I have been perplexed by the dismissal of it as beneficial.  Surely, the medical profession at large must be aware that it works wonders for a portion of the population in these circumstances so it must be that they think we are so stupid or irresponsible that we are not able to recognise that it is not something that can be taken long term.  But just to get relief for a short time is wonderful.

Mine was just a very short course, @MichelleGS - basically 4-5 days, one tablet a day, 20mg from memory.  I also had extreme 'trigger finger' (where 2 fingers would totally LOCK when bent  and then hurt when forced straight again) but this has totally rectified now. Early in the morning, I still can't form a full fist with my left hand - it is just too stiff - but at least it doesn't hurt now - and my uke playing is fine again.

Previously when I was on it for over a week for a nasty chest condition, I had to 'wean off it' in reducing amounts over a number of days.

I wonder if they've done trials on using the smaller amounts every now & then on BC patients having nasty side effects ..... If it results on people remaining on the AIs - a win/win situation

My understanding of the best benefit is a course of it for a set number of days where the dosage is reduced as you go along!   As others have said here they felt benefit at the time but it is not a long term solution.

@iserbrown agree!  I’m just interested to know others experiences. I have read some research that says 5mg for 1 week can be effective for up to 3 months.  

It's all about finding something that you feel works for you!  Prednisolone is useful at times!  I had a course back in January however my aches, BC unrelated, did not subside!  

My Dad had prednisolone for a lung disease.  Whenever he got a cold it was a concern that it was becoming borderline pneumonia he would have a course of it and it worked a treat!

Best wishes 

@arpie what dosage and for how long did you take the prednilosone?  

Will follow your new Fish Oil with interest, @sister (maybe using a straw to suck it to the back of your throat .... it worked with my recent pico prep experience!) ...Sadly krill and FO (hmm, have another saying for that!  LOL) capsules do nothing for me.  Yes, the side effects is the HUGE elephant in the room ... and I’ve read of quite high level dropouts in the early months of treatment, some not even reaching 12 months.  Here’s an interesting read - relative to patient’s ‘expectations’ of the expected side effects.  I had no ‘real expectations’ - I was quite prepared to wait and see if I was the lucky one that had none ..... 
https://www.sciencedaily.com/releases/2016/08/160822215239.htm

@MichelleGS ... I was on Letrozole from mid last year and only lasted 6 weeks, the aches and pains were so great.  I already had arthritis pain, so it more than doubled it, particularly in my hips, hands and feet.  Then I was on Exemestane for 6 months and now on Arimidex which has been the best so far - tho recently my feet have been killing me. On all the meds, I was taking pain killers and anti inflams during the day and temase for night

I also had a go with Prednisolone in Feb, as my fingers weren’t working and I needed them for a major ukulele performance, And as @sister said ... the change was just brilliant, but sadly not sustainable long term.  

I have been using some ‘special oil’ for some months now and have not been needing the meds other than the occasional temase maybe once a fortnight (2/3 times a week before.) It is only my feet playing up just now.  

All the best for your ongoing treatment xx