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Letrozole & joint pain

SpongebobMom profile image
18 Replies

Has anyone done or researched any way to combat the joint pain & stiffness from letrozole?

I've taken 2.5mg of letrozole since February 2019 and some days my knees are just one fire. Onc says that's normal and to "move more"

I don't want to "take more Advil", I'd like to do something whether it be PT or acupuncture or something along these lines.

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SpongebobMom profile image
SpongebobMom
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18 Replies
DianaTrapani profile image
DianaTrapani

I use High Dessert Pure lotion from the cannabis store mixed with arnica lotion or Claritin. But I recently learned that pure natural cod liver oil works for joint pain. I haven’t tried it yet but have ordered a small bottle to give it a try.

SpongebobMom profile image
SpongebobMom in reply toDianaTrapani

I'm going to try the cod liver oil, as it seems to have many benefits.

Fiercefighter13 profile image
Fiercefighter13 in reply toDianaTrapani

I have terrible joint pain left over from the endocrine inhibitors I was once on, and now the chemo I'm on makes my joints hurt something awful. I got Carlton Cod Liver oil and it has helped tremendously. My sister uses it because she has terrible osteo arthritis. It has been a life saver for me. I take one teaspoon every night after dinner. I highly recommend cod liver oil for joint pain! I hope this helps anyone looking for a solution!

bikebabe profile image
bikebabe

I don’t know the answer to this but have same problem which has only really happened after 18 mths of Letrozole use.

Kiss_my_grits profile image
Kiss_my_grits

My joint pain significantly decreased when I added Claritin and switched to the Letrazole manufactured by Teva. Teva is having production issues and I’m back on Accord and definitely feel the difference.

SpongebobMom profile image
SpongebobMom in reply toKiss_my_grits

I just looked at who manufactures my letrozole & it is Accord.

Kiss_my_grits profile image
Kiss_my_grits in reply toSpongebobMom

I switched from Accord to Teva and it was better for me. Like I said, hard to get right now but keep it in mind if it’s still an issue in the future. I’d add Claritin

love2golfwell profile image
love2golfwell

I have been on letrozole for almost 3 years and the joint pain has been getting worse over the last few months. I have it at night when I wake up to use the bathroom and first thing in the morning, especially in my elbows and knees. I am wondering if the longer we are on this med, the effects increase. Once I start moving around, it gets better. I do exercise every day and that seems to help. I have also started using an essential oil based rub called Sore No More from Revive Essential Oils before I go to bed. I am also going to start going for monthly massages. I went for one last month and it was amazing. I have heard of others on here using Claritin for joint pain. I'm not sure what in Claritin helps with that but might be worth a try. Best wishes.

NShaft profile image
NShaft

I have been taking tart cherry capsules. I’m not one to jump on the bandwagon with all kinds of supplements but was uncomfortable enough when on Letrozole to try it. It seems to work somehow. I only know that when I stop taking it the aches feel worse. I don’t mega dose, just the lowest I can find on Amazon.

mariootsi profile image
mariootsi

I found that moving and walking helped the joint pain.

SpongebobMom profile image
SpongebobMom in reply tomariootsi

I move almost everyday, I've scaled back on any heavy lower body weight lifting as it seemed to make my knees ache more than it was worth.

morty87 profile image
morty87

A daily Claritin has done wonders for me. I've been on Ibrance and Letrozole since 2018 with excellent results. Claritin is an antihistamine that decreases the amount of inflammation and swelling in the bone marrow and reduces the pain. I have allergies so this has dual benefits!

SpongebobMom profile image
SpongebobMom in reply tomorty87

Def going to try this, sounds like a win-win.

morty87 profile image
morty87 in reply toSpongebobMom

Give it a week or so to see the results. I hope it works for you.

TammyCross profile image
TammyCross

There has been much discussion of this problem with letrozole and other AI's. It is a common side effect. Someone wrote once that the cause is that AI's decrease production of synovial fluid, which lubricates joints and helps muscles slide.

I spent a lot of time doing research on supplements and other treatments (infra-red light looks the most promising) that increase synovial fluid. They all also increase production of cancer cells. For the time being -- as more research is being done -- using them is not recommended.

Claritin did not help me at all. I switched from letrozole to anastrozole, not quite as bad but still bad. I am mostly stiff when I get up, painful to move (it is mostly in my groin, hip joint, and shoulders). My onc did a study that found that acupuncture helps with this pain from AIs (aromatase inhibitors). Relief is short lived, however. Massage can help. Moving is the best, fighting through the pain to get the juices flowing.

I went to a palliative nurse practitioner who recommended topicals. (My oncologist and primary doc just told me to take more Advil. I think that is bad advice.) The palliative np got me a cream that has to be compounded. Out of pocket. I haven't used it, because the pain is deep and I cannot figure out where to put it. She also recommended a cannabis ointment. She referred me to a rehabilitative medicine md. I have to say I have restricted range of motion to be eligible. I do, at least early in the day. I don't know what he will recommend.

I think part of the purpose of seeing him is getting PT, acupuncture and massage covered by insurance as medically necessary. It is hard to adopt a regime because it comes and goes, is sometimes incapacitating and other times not. It got much worse a few months into it, last winter, then eased up in the spring (weather related?) -- and I have adjusted. How I sleep and how long seems to affect how stiff I am.

MaryCos profile image
MaryCos

Tart cherry extract. Was recommended by an oncologist at the Living Beyond Breast Cancer (LBBC) Conference on Metastatic Breast Cancer last year. There are studies on AIs (like Letrozole) with regard to reducing joint and muscle pain. I started making this part of my daily regimen since, and I swear by it. Now, I have chronic pain (which is dramatically better since doing this) and lesser periods where my treatment causes this pain (although this happens too). If I miss several days of the tart cherry, I see a very clear difference in how I feel. (Admittedly, I also started daily cannabis around the same time I started the tart cherry thing.)

I buy my tart cherry extract from Amazon. Look it up, there are all kinds of studies out there about it!

DianaTrapani profile image
DianaTrapani in reply toMaryCos

From webmn.com:

Overview

Tart cherry (Prunus cerasus), also commonly called tart cherry, is a fruit. The Montmorency tart cherry is the most popular type grown in the U.S.

Tart cherry fruit contains chemicals that might reduce swelling and act as antioxidants. Some tart cherry products are marketed for specific health purposes, but up to 97% of tart cherries grown are used in cooking and baking.

People commonly use tart cherry for muscle soreness after exercise, improving athletic performance, high blood pressure, and other purposes, but there is no good scientific evidence to support most of these uses.

I previously read that taking joint supplements can help.

GlucosamineOverview

Glucosamine is a chemical found in the body. Glucosamine supplements are sold as glucosamine sulfate, glucosamine hydrochloride, and N-acetyl glucosamine.

Glucosamine is used by the body to make other chemicals that build tendons, ligaments, cartilage, and the fluid that surrounds joints. Joints are cushioned by the fluid and cartilage around them. Taking glucosamine might increase the cartilage and fluid around joints and/or help prevent their breakdown.

People commonly use glucosamine sulfate and glucosamine hydrochloride for osteoarthritis. Glucosamine is also used for joint pain, rheumatoid arthritis, multiple sclerosis, and many other conditions, but there is no good scientific evidence to support these other uses.

Medications for cancer (Topoisomerase II Inhibitors) interacts with GLUCOSAMINE

Some medications for cancer work by decreasing how fast cancer cells can copy themselves. Glucosamine might block these medications from working. Taking glucosamine along with some medications for cancer might decrease the effectiveness of these medications.

I would discuss with Oncologist before trying this supplement.

AS1f profile image
AS1f

You have to monitor carefully when on the AI medications because a change in manufactures for the same drug can bring on new side effects. I had been on Letrezole almost two years with few side effects when a change in insurance caused me to get the drug via mail order and I suddenly developed major joint pain. After taking only 10 pills I switched back to my local pharmacy and symptoms are now easing. I'm sure that the mail order companies source the drugs from the cheapest possible vendor and suspect that not all companies are reputable. Because everyone reacts differently to each drug it makes it harder to navigate what to expect from each medication and I fear there are many patients suffering needlessly. I have heard that when patients are not tolerating the AI meds it can help to go off them for a week to reset, then resume, and that it can often make them more tolerable and avoid having to switch medications.

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