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

kmakm
Member
6 years ago
I have quite high levels of pain from Letrozole. I see an osteopath every fortnight, get as many remedial massages as I can afford, do yoga and pilates, apply heat, take magnesium flakes baths, panadol osteo to take the edge off, and occasionally treat myself to a Targin. That knocks off most of the pain but never the ankle pain which is constant and bad.

I actually discussed pain medication with my GP last week, asking if there is something I could take all the time. However unfortunately the answer was no. They're either not good for you (anything with codeine), addictive, and/or less efficacious the more you take them. Tramadol is a no no for me because it doesn't mix well with the antidepressant I'm on. My GP is happy for me to treat myself to the occasional Targin, and my oncologist is happy for me to have a two month break from the AI after each 12 months of taking it. Nothing seems to make the remotest bit of difference to the stiffness and the hobbling. Best of luck, K xox
Sister
Member
6 years ago
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.
Afraser
Member
6 years ago
That’s interesting research @Sister. I have been taking fish oil for years to alleviate my creaky knees (no pain though, nor any from taking letrozole later). To be honest though, two sessions at my new yoga class has done more for my knees recently than anything else. I’ll stick with both!
MichelleGS
Member
6 years ago

Sister said:

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.

I have also tried high doses of fish oil but I don't think there was any significant difference. I have invested in a magnesium pool at home and that helps a lot. Haven't tried prednisolone - might chat to the Doctor about that.
Sister
Member
6 years ago
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.
kmakm
Member
6 years ago
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.
Beryl_C_
Member
6 years ago
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.
Artferret
Member
6 years ago
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
kmakm
Member
6 years ago
@"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...
Sister
Member
6 years ago
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)