I know this subject has probably been done over and over but I am interested in finding out if anyone has had success with controlling severe pain caused by aromatase inhibitors.I have had endometrial cancer and breast cancer. Both primary cancers. Both hormonally driven. As a result I need to stay on HIs possibly for the rest of my life. I'm 54. This journey started when I was 49.I did 14 months on Letrozole and 11 of them were pure hell. The pain I felt was unrelenting. It started in my hands but quickly moved to hips, knees, ankles, feet. Standing was horrible. Walking any distance impossible. I tried:Exercise - aqua aerobics and swimmingTumericDuloxitineMagnesiumIbuprofenCelebrexMy oncologist changed me to Exemestane and I have been on that since February this year after a 4 week break. It is much better but I still have pain when I stand and walk and have developed issues with my Achilles tendon which is very painful. I have dropped the Duloxitine and Tumeric (the pain didn't get worse because of this), still take 100mg of Celebrex morning and night. Use Voltaren emugel and Magnesium (soluble) at night. I take Vitamin D.I have been going to a specialised gym that works with cancer patients and that has also helped but currently I am not going because of the Achilles problem. I have seen a rheumatologist, a physiotherapist, exercise physiologist.I really would like to find a pain medication that actually takes the pain away when I walk so I could walk and get back to the gym a some semblance of normality.I have recently also stopped working, partly because of these issues.So, any suggestions/ideas I can talk through with y medical team.

I am also on Letrozole and I'm always in pain and stiff from it - it's just the severity and prominence of the location that changes from day to day. Sometimes exercise can help (particularly with the feet and legs), sometimes it makes it far worse. I can't take ibuprofen and similar due to allergy. I do take anything from panadol to panadeine forte to deal with it but as @kmakm says, codeine is problematic. My oncologist prescribed me 7 days of prednisolone a few months ago and I have to say it was like a magic wand - the pain disappeared within 6 hours of the first dose. It took a while to return fully after the course finished but I would have to say it is different now as prior to the prednisolone it was more constant. However, as with AIs, prednisolone can have a severe impact on bone density so it cannot be an ongoing treatment. My onc has agreed, a little reluctantly, that I can take a tablet again this year if I just can't deal with things. I'm saving this up.I'm not necessarily a believer, but I just heard that researchers in Adelaide are presenting their findings on the benefits of fish oil on inflammation caused by rheumatoid arthritis. Now, I don't think that I have RA but it is inflammation that is causing my pain so I'm prepared to give it a go. They use liquid fish oil (the brand that they have been associated with in the past is Melrose) and from what I can find out, the dose is 10-15 ml per day though that is from older research so may not be accurate. Anyway, I started that yesterday so will keep my fingers crossed.

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

Apparently men drop out because the pain is too hard to live with but women drop out because we're not bright enough to understand the benefits - that's what I take from my reading about it. But of course, this is not the only health are where womens pain is disregarded. I get that that there may be no answers at the moment but what there does seem to be is no recognition that anything needs to be addressed. There's a bloody big elephant in the room and the "experts" seem to think it's a mouse. (and I have no idea why this comment has decided to dotpoint itself)

@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.

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.

Exemestane and Joint/Muscle/Tendon Pain

24 Replies

primek
Member
6 years ago
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.
kmakm
Member
6 years ago
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
Electra
Member
6 years ago
@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.
Sister
Member
6 years ago
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.
arpie
Member
6 years ago
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
iserbrown
Member
6 years ago
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.
MichelleGS
Member
6 years ago
@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.
iserbrown
Member
6 years ago
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
MichelleGS
Member
6 years ago
@arpie what dosage and for how long did you take the prednilosone?
arpie
Member
6 years ago
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