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Quit AI drugs - how long to wait before osteo arthritis interventions like PRP?

I was on AI drugs 15 months (Letrozole 11 months, transition 1 month, Anastrozole 3 months). I was unable to tolerate the joint pain and now take Tamoxifen 20 mg (1 month).

My knee osteo arthritis advanced during last year. Symptoms were lack of range of motion, pain when moving, and loss of strength to stand (likely meds-caused fatigue, not joint issue).

My ability to stand and walk a mile without pain returned after I quit AI meds but I have limited range of motion and significant pain at night.

I have done PT, massage, and acupuncture with no improvement. I am working with sports orthopedists and had gel injections (sodium hyaluronate) in both knees with limited results. Next intervention (before joint replacement) is paying privately for PRP (platelet rich plasma) injections and/or stem cell injections. Both have documented good results for old women runners (which is my label!)

Question – how long after AI drugs should I wait to give them the interventions the best chance of success? Orthopedists are uninformed about meds impacts on outcomes (except directing me to transition from ibuprofen to acetaminophen pain relief.)

Pic a profile in Adventuring Cycling magazine 6/2022 three months post BMX. How quickly things can change when you are on AI drugs …

Comments

  • maggie15
    maggie15 Member Posts: 848

    Hi @olympicmtgirl , There are 4 SNPs on chromosome 14 that lead to AI joint pain. About 40% of people have one of them. My MO who is primarily a research scientist told me that the damage caused is permanent because cartilage (which can't be regrown) is destroyed. That's why I didn't take AIs. Tamoxifen does not cause this damage.

    I don't know how this would impact PRP injections but if the cartilage is gone waiting won't make it return. I have had good luck with corticosteroid injections in my knees. You are limited on how many you can have but mine tend to be effective for over 18 months. On a side note, due to issues with my esophagus I can't take NSAIDs. My gastroenterologist told me that some of his liver inflammation patients told him that the CoQ10 he prescribed improved their arthritis pain. I tried it and while it isn't a miracle cure it has definitely helped (started with 200 mg daily for a month then 100 mg daily for maintenance.) That might be worth a try. I'm trying to avoid knee replacement since the recovery from that is difficult. My sister had TKR on both knees and while acupuncture was useless for her before surgery it helped her after surgery.

    I love the photo and the article. Hopefully you can get back on your bike sometime in the not too distant future.

  • lillyishere
    lillyishere Member Posts: 770

    olympicmtgirl, I love the picture. Thank you for sharing your story. I have a similar story with letrozole. After 6 months, I start having one after another problem. First I got terrible pain in my joints, I developed Baker's cyst, I developed tennis elbow, I couldn't get up from the chair, even the heels started hurting so much I was walking in tippy-toe. I am an active woman and a yogi. I used acupuncture, PT, you name it and after 2 years, I told my MO that not only I can't exercise, but I can't walk, when I got up from my chair I felt like 100 yr old. He suggested having a break for 6 weeks and starting exemestane since it is a totally different formula from letrozole/anastrozole. I do feel much better. The joint pain is gone, I can walk and run. The problem I am having is insomnia. But at least I can do yoga and walk for hours. You can ask your MO to change to exemestane and give yourself at least 6 months to feel the difference. These are harsh medications and we need to pick our poison. 

  • olympicmtgirl
    olympicmtgirl Member Posts: 29

    https://community.breastcancer.org/en/profile/maggie15 Wish I had understood the permanence of the impacts of the joint affects … but even if I knew I am not sure if I would have had the courage to not follow the Fred Hutch protocol. Having care at a research institution, I find my MO's appointments very quick and only focused on keeping me on the meds, never why am I suffering from this set of complications.

    I will give CoQ10 a shot. Tried Claritin over the winter and had no runny nose for months, but sadly no relief from pain.

    If your MO has any research links please share. I am building data so I can share with others so they can make an informed decision.

  • olympicmtgirl
    olympicmtgirl Member Posts: 29

    https://community.breastcancer.org/en/profile/lillyishere , I heard exemestane was the better choice in a Breastcancer.org podcast, but my MO didn't go that direction. And I am not effective advocating with her - her abruptness and my flailing are a bad combination.

    At this point I don't want to test another AI drug - I just want to get mobility back. My knees are too crunchy for yoga but I can do pilates core work! Hoping PRP will bring me back to yoga too.

  • maggie15
    maggie15 Member Posts: 848
    edited September 2023

    @olympicmtgirl , My MO will discuss the science behind things and recent research even though it is not yet standard of care. He wasn't initially assigned to me but my breast surgeon made the change since she thought we would get along well. In my case he recommends 10 years of AIs which I am not taking for many reasons, the chief one being estrogen is protective of my precancerous esophageal condition. Also thanks to a rare pulmonary side effect from radiation AIs are the only thing I can use in the event of a distant recurrence and I don't want to chance becoming endocrine resistant. Tamoxifen is out because of my lungs. Since I understand how much risk I am taking and he thinks my objections are valid he is not upset by my noncompliance.

    Here is a link to a summary of genomic reasons for some patients having joint pain from AIs. The actual papers are referenced.

    https://www.ctg.queensu.ca/public/bulletins/GEN/2010/GEN-2010-10-01-2704.html

    Here is a link to the effect of lack of estrogen on joint cartilage. Section 4.2 is the relevant one.

    https://www.mdpi.com/1422-0067/21/16/5625

    @lillyishere , Have you tried acupuncture for your insomnia? My RO referred me for that during radiation since I was both extremely fatigued and couldn't sleep. It really helped.

  • beginagain22
    beginagain22 Member Posts: 100

    @olympicmtgirl

    I feel like we could be sisters from some bad family. My grade 3 stage 2 diagnosis is a little different and I was ER/PR+ HER2-. Also had AFC after double mastectomy and ALND. No chemo or rads due to onco score. Couldn't tolerate Anastrozole so moved onto Letrozole and was just miserable with the joint pain. Took this gym rat out of the gym. I just started Tamoxifen a month ago and the joint pain is a lot better already but I am still very stiff. Range of motion issues would be a good description. Here's to us both getting our mojo back :).

  • olympicmtgirl
    olympicmtgirl Member Posts: 29

    Sorry to hear I have siblings?! Sadly I knew I did.

    I wish there was a study of women on AI drugs requiring knee replacements vs a control group. Feel like AI drugs are god's gift to orthopedists.

    I find side effects hard to parse with different drugs and breaks. MO gave me a tamoxifen break last month because they were a little freaked by my inability to stand for long and requested some testing. In rare good news … no rheumatoid arthritis markers!

    Today energy back to stand, knee not aching, and joints are not stiff … after we paid $10K for experimental treatment. I had stem cell (from my pelvis) and PRP (platelet rich plasm) injected into my knee. Procedure required six weeks of very light duty. Don't know if the improvement will last so jury is out on whether it was worthwhile. I started BC treatment with osteoarthritis but assume AI drugs put mine on a fast path.

    Added a new type of orthopedist to my stable when severe trigger thumb started in August. Cortisone shots cured it. Thinking it was Arimidex caused and hoping Tamoxifen won't bring it back.

    Hoping we won't be entering the walker races at the gym any time soon!

  • ratherbesailing
    ratherbesailing Member Posts: 118

    Wow, all these posts sound so familiar. We all hear about bone density, but I recently learned that the AIs cause tendons to stiffen, thus increasing the possibility of tears (and trigger fingers.) This explains why I always felt no amount of stretching was ever enough. A cancer physiatrist I spoke with said the suddenness of the drop in estrogen can wreak havoc. I wish MOs would tell us this - might make those who are more active more careful.

  • eekfun2023
    eekfun2023 Member Posts: 1

    OH MY GOODNESS. Am I glad I found you all! I'm heading to ortho tomorrow for knee pain. Diagnosed with ILC 1/13/23; lumpectomy 3/17/23; 21 rounds of radiation ending 5/16/23. Letrozole for 6 weeks. Couldn't take the side effects, knee pain was severe. Tried steroid injections, didn't work. Started Exemestane in September; off again by November. I had heard of one other woman who went directly from BC treatment to a knee replacement, but you all confirmed that I am not imagining it and the osteoarthritis I had prior to BC treatment got so much worse after starting the AI. I had been hopeful that after stopping the AI, my knee might repair itself. Hoping that imaging (xray + MRI) will provide insight. I was considering waiting on surgery. Not anymore!

  • olympicmtgirl
    olympicmtgirl Member Posts: 29
    edited January 10

    Update from the original poster.

    My severe leg pain did not start till month 12 on AIs. I had been on HRT for twelve years prior to cancer and I wonder if it took that long to squash my hormone happy joints?!

    The osteo arthritis started at 3 months on AIs with knees losing range of motion. Got the gel joint shots and range of motion better.

    At 14 months on AIs I had a sharp pain back of knee when I crouched that continued and severely impacted my life. Ortho sent me to PT for pulled hamstirng. After 3 months in pain, tried PRP/stem cell and after five challenging weeks of recovery, had six pain free weeks in my knee, then back of knee sharp pain returned. Started advocating loudly and finally an MRI identified a torn meniscus.

    I am scheduled for a partial knee replacement this Spring. I quit the AIs last month after 20 months because
    1) I was in significant pain from both my meniscus and AI general leg pain
    2) Unknown if my knee replacement could be the solution or would my joints continue to degenerate.
    3) I looked at my onco scorecard and I didn't lose that many life expectancy percents
    4) turns out I can't appreciate every day and count my blessings. I am pissed off if I can't be outside moving and no amount of happy drug was going to fix that.

    And just to keep my stable of orthos ever expanding, I had severe trigger thumb so got a hand surgeon for the cortisone shots. They worked - yah!

    I don't know my LT cancer or orthopedic outcome, but my learnings from my journey so far:
    1) my orthos don't know or care about AI drug side effects so we are on our own for those decisions
    2) my orthos are "one trick ponies" and they really believed in their trick. I was fortunate to have PPO insurance and a good athletic network to help me identify where to get multiple opinions. It was confusing as they each had the magic ticket to fix me. Pretty sure the $10K I paid for stem cells was a waste, but you do the best you can. Get multiple opinions, make a decision grid, and go with what you believe.
    3) my meniscus pain was dismissed and it was 5 months before received an MRI and an accurate diagnosis. Was I dismissed because I was old? Old and a woman? Who knows, but advocate for yourself.

    Good luck to us all. Life is complicated but the AI journey was not a jungle I saw coming!