I've been on Letrozole since August 2018 and have had a lot of joint pain and for the last few weeks, soft tissue issues with my knee as well (area of an old ligament injury). I'm cautious about saying things are improving because I've been caught out before since starting the AI, but for the last week I've been doing some resistance exercises in front of the telly every second night (the weights are by the couch so inability to go and get them is no excuse). I have noticed a slight improvement, particularly in my knees. I'm just doing some of the weights exercises that the oncology rehab place I was attending last year during chemo, had me doing. Mostly, since starting Letrozole, exercise has helped but only until I sit down again. This seems to be a bit longer lasting so, fingers crossed...maybe not...too painful...I'm also trying to sign up for Encore again next term but may not get in if the number of newbies is too high. If I can't, I've decided that I will run my own one woman aqua group one afternoon a week on the way home from work. May even do that anyway if I can work out a time that I don't have to be dashing home for someone else's activity.I'm ntending to check out an exercise class in a local town on Saturday (there! I've written it so I have to do it!) - I've explained that I have an aversion to gyms (their website alludes to people who love them) and they still think they can do something for me.And it looks as though, after much going around in circles, an Adelaide Pinc & Steel physio will be running an SUP exercise programme at the end of the year and will contact me when it is more of a reality. Yay!But, whatever else happens, I'm determined to keep up the weights at night.

Good idea @iserbrown an ex phys will be able to develop a program tailored to your limitations and your needs. Check it out @Sister. I used one after i finished the ex-med program just to make sure i was on track with my gym program and she developed a 4 rotation program for me. It was great.

@Sister, you might have noticed the first was published in 2010 and the second in 2009. These are both respected medical studies, and this knowledge has been out there, and in lots of bespoke medical publications. This myth that is trotted out that the symptoms described are anecdotal is rubbish. It is a well known and established fact that people stop potentially life saving, or at least life prolonging treatment because of intolerable side effects, and it gets chucked into the "Too Hard" basket...basically suck it up or throw the dice and take your chances. As has been pointed out, if the majority of patients were men....well...that would be different. Research would be undertaken, solutions found (or other reliable alternatives) and lives would be both improved, extended or saved. Disgraceful.

This is from my Exercise Physiologist Just FYI, every year each person is eligible for 5 Exercise Physiology sessions under Medicares Enhanced Primary Care Plan (EPC). There are also other things available like physio, dietitian, osteo etc... ALSO, If you have private health insurance you may receive a further rebate on top of the scheduled fee. Hopefully you can check it out and find someone that will tailor for you. Once I get the all clear this is what I will be doing as the core muscles and muscles in general deterioate when you're unable to use themHope it helps and take care

Interesting article.https://www.mdmag.com/medical-news/scientists-discover-why-aromatase-inhibitors-may-cause-arthritis

Another (rather long), but very interesting article and study.https://hal.archives-ouvertes.fr/hal-00535439/document

Letrozole Joint Pain & Exercise | BCNA Online Network

iserbrown
Member
6 years ago
I went on prednisone and nada! For me it was wrist pain and trigger thumb but it turned out not medication related.
Steroids and cortisone were waste of time

Best wishes in getting it sorted
arpie
Member
6 years ago
Yep, I've been thinking that myself, @Artferret, better the devil you know - if I was to change to Anastrozole & got lots of hot flushes etc again - I'd HATE that .... even tho debilitating & annoying, I would rather put up with the hand/thumb pain, which sadly affects my 2 favourite past times :(

Whilst I got 'some' hot flushes in Exemestane (it isn't on their 'side effects chart!) it IS on Anastrozole/Arimidex.
Artferret
Member
6 years ago
@arpie Don't know that i want to go down the steroid trail. I was on prednisolone when i had Crohn's disease after i had a relapse in the first year and yes it was a godsend but i couldn't stay on it forever. I'm lucky? that apart from my hand and wrist making it difficult to do somethings, it doesn't ache, it doesn't throb. Every now and again it will like on Monday my hand was just aching, don't know why and was gone by Tuesday. I think I'm just going to have to start manipulating it manually in an effort to keep the joint malleable. Between that and seeing my osteo regularly might be enough. My onc has offered for me to go on to tamoxifen instead but I'm not that keen knowing it has its own set of issues. Sometimes it's better to put up with the devil you know 😈
arpie
Member
6 years ago
Prednisone in small 5mg daily doses for a week helped this in study. They say it also helped prevent people from going off AIs .... but didn’t suggest the follow up regime .... whether one week a month (that I could see.)

i was on a bigger dose for 1 week before the big uke festival that I was playing in .... and the extended relief it gave was terrific. Hmmmm could be worth a go now and then, not full time tho? Check with your GP. The low dose occasionally isn’t as bad as the high doses re affecting bone density and fractures, apparently
http://ar.iiarjournals.org/content/32/6/2331.full

QUOTE. Low-dose (5 mg) of oral prednisolone administration once a day in the morning for only seven days is a safe method that does not require steroid coverage .......//......... The mechanism of the efficacy of prednisolone in AI-induced arthralgia is unclear; however, our aim is to reduce cases of AI-induced arthralgia that are severe enough to force patients off of AI therapy. Clearly, patient education is the first step towards managing AI-induced arthralgia successfully, as it is important that patients comprehend the significance of total adherence to AI regimens. The findings of this study are limited by its small sample size and by the lack of a concurrent control group. However, despite these limitations, our results suggest that low-dose/short term prednisolone is a substitute for NSAIDs, acetoaminophen and COX-2 inhibitors for patients who suffer from AI-induced arthralgia, and may prevent patients from dropping out of AI treatment. UNQUOTE
arpie
Member
6 years ago
haha @Artferret - that gives your hubby something to do - I just don't wear bras! ;) Yes, I've changed how I hold cups, pick up many items, how I use a pepper grinder, pull up my trousers. It is as if something else 'happens' every other week - something I can't do, that I could, quite easily, just months ago.

I've just noticed in the last 2 days that I can't even squeeze the toothpaste tube any more, with either hand! I lay it on the bench & squash it! grr And I was hoping for LESS pain/restriction whilst 'off the meds' for 4 weeks! (Half way thru now!)

In the 'Trigger Thumb' document on the previous page - they mention that some women had had X-rays/scans, blood tests etc & there is nothing to show for the reason of active pain or restriction of movements in the hands/thumb - and could only be caused by the meds. Not sure I am up to having surgery on both thumbs tho!

Mine are locked 'straight' (not bent - hers were locked bent) but if I can bend mine (painfully), they then remain lock bent & I can only straighten them manually, using my other hand!

Quote: A 49-year-old woman visited our department due to painful bilateral trigger thumbs, which were characteristically locked in flexion. Both thumbs showed passively correctable locking and the patient did not perform an extension of both thumbs because it was very painful. There were no palpable nodules in either thumb. The patient had no history of previous trauma or familial history. Laboratory tests were normal, including blood sugar, erythrocyte sedimentation rate, C-reactive protein, renal function, thyroid function, and rheumatoid factor. Radiographs of the hands were also normal. Three years ago, the patient underwent a total abdominal hysterectomy and bilateral salpingo-oophorectomy due to endometrial adenocarcinoma. One year later, treatment with pelvic radiotherapy and anastrozole (Arimidex®, AstraZeneca, Seoul, Korea) was started due to iliac lymph nodes metastases. Since then, the patient experienced tolerable arthralgias, myalgia, and mild triggering during the treatment with anastrozole. After 2 years of treatment with anastrozole, the patient developed severe triggering and locking in both thumbs. Conservative management with local steroid injections was not effective and further aggravated the triggering.

Hence, AIs are useful in the management of endometrial cancer. However, musculoskeletal complaints, particularly arthralgia and myalgia, in patients treated with AIs have been reported. It has been suggested that AIs reduce the antinociceptive effects of estrogen by complete estrogen depletion, and therefore, decrease the pain-threshold, resulting in arthralgia. Also, it has been reported that AIs are associated with carpal tunnel syndrome (CTS) and trigger finger. CTS has been reported to be associated with all AIs, anastrozole, exemestane, and letrozole. Arthralgia, trigger finger, and CTS were frequently reported for patients treated with letrozole or exemestane, and most patients showed a severely reduced mobility of the hand or wrist. Patients receiving anastrozole showed a higher incidence of joint symptoms, arthralgia, arthritis, and CTS, as well as of tendinopathy. However, severe trigger finger has not been reported yet for cases treated with anastrozole. The exact mechanism for AI-induced trigger digit is unclear. Morales, et al. showed a thickening of the flexor tendon sheath in all patients treated with letrozole and exemestane. Martens, et al. reported thickening of the abductor pollicis longus tendon in patients receiving anastrozole. These reports provide a feasible reason for the trigger thumbs in patients treated with AI, as thickening of the tendon sheaths of the A1 pulley may lead to severe triggering of the flexor tendon, as was observed in our case.
Conservative treatments, such as splinting, NSAIDs and steroid injection, may be less effective to treat AI-induced CTS or trigger finger, compared with idiopathic CTS or trigger finger. Among AIs, anastrozole and letrozole reversibly bind to aromatase enzyme, while exemestane irreversibly binds thereto. However, the triggering of our patient was not improved after treatment with anastrozole. At first, our patient received local corticosteroid injections in both thumbs; however, the symptoms aggravated in both thumbs and resulted in locking. Thus, surgery was performed. While corticosteroid injections may be effective in treating conventional trigger digits, our findings suggest that AI-associated trigger digit requires surgical treatment.
Unilateral trigger digit is an entity commonly seen by hand surgeons. Even if only one finger is involved in the triggering phenomenon, hand function can be seriously compromised when the digit is locked in flexion. In our patient, there were no predisposing factors present, such as thyroid disease, diabetes, renal disease, or rheumatoid arthritis. Our patient showed locking trigger thumbs in both hands in association with the AI anastrozole (Arimidex®). To the best of our knowledge, no previous reports have suggested an association between anastrozole and bilateral trigger thumbs in the treatment of endometrial cancer. Nevertheless, clinicians should be aware of possible medication side effects as a potential etiology of trigger thumbs. Unquote
Artferret
Member
6 years ago
I had both my hands and wrists x-rayed this week just so i had a benchmark for when i have my drug break in June and July. All that came up was general wear and tear and a small amount of arthritis, not much different to the one i had early 2017. I was relating to a friend yesterday about how we used to teach the kids left hand from right hand by holding your hands up palm facing away from your face and stretching both thumbs down till they were at a 90°angle and asking the kids which one made the letter L...not a hope in hell of me doing that with my right hand! I used to play the piano years ago, no way could i stretch to an octave now. Yet my onc was still trying to make out that the drug may not be the problem. I cannot understand why so many medical professionals just can't accept that this is a major drug related problem particularly as they are being told time and time again...go figure...I'm with you @arpie, the things I've had to change, little everyday things like new tea caddy and jug cos i couldn't open the old ones, not being able to undo my bra at night, though my husband takes great delight in performing that task. Ah well, there has to be a silver lining somewhere for someone 😍
iserbrown
Member
6 years ago
Trigger thumb for me was related to spine - nothing to do with medications
arpie
Member
6 years ago
WOW! What did they say caused yours, @iserbrown ? What did they 'do' about it? Did you have the surgery? Do you still have it? Which meds were you on at the time?

TBH, I'd be VERY surprised if mine was from anything else .... my GP ruled out Carpal Tunnel for the rest of my hand/wrist pain. At the time, the trigger thumb 'wasn't so bad' as it is now. Some days better than others - but quite locked straight most of the time.
iserbrown
Member
6 years ago
Have a medic check your trigger thumb as it may be something totally unrelated to your medication. Mine was!
Sister
Member
6 years ago
I'm usually a bit more careful about looking at dates on things...