AI related arthralgia question

[Hopeful]

I have been on AI's since October 1, 2006. I started on Femara, then swtiched to Arimidex after 6 weeks due to severe tinnitus. I stayed on Arimidex for about 11 months, until the gradually worsening thumb (both left and right) arthralgia got severe enough that I could not turn the key in the lock of my front door. The severity of the pain was mild and intermittent up to that last month, when it really increased in intensity. I switched back to Femara at that time, which I have now been on for 11 months. I started out with no arthralgia discomfort, then gradually onsetting intermittent arthalgia in the wrists and ankles (thumbs are fine this time!) This has once again gotten very bad over the course of the last month. I have a month's worth of unexpired Arimidex around that I am going to try starting tonight, to see if there is symptom relief or if I go back to sore thumbs (there HAS to be some ironic twist to that symptom).

Has anyone else who switched from one AI to the other had a similar experience?

Hopeful

[Jean]

Hopeful,
I started with Arimidex also..had strong joint pain.
Stopped Arimiidex and started with Femara.
Much better response - still experience joint pain but it is decreased by 75%...upon rising from bed is the worst time. Once I get going and moving I feel much better.
Exercise is vital for me while on AI - I do alot of walking.
Have been on Femara 13 months...I am just now
having some thumb pain in one hand. It is not constant and I find soaking the hand in warm water helps and
not to exhaust my thumb with too many hours of compter work.
Wishing you better response with Femara...
Kind Regards,
jean

[dlaxague]

Have you tried some kind of stretching/release/strengthening?

Yoga or ART (active release something - some chiropractors are trained in this - google it) helps a lot. As do NSAID's. I took daily celebrex during the worst of the AI pain.

They are beginning to see that the "arthralgias" or "muscoloskeletal issues" of AI's are more pronounced in those who are sedentary.

My thumbs and hips are my weak spots. I try to stretch my thumbs, daily. Hips too - they are the main focus of my yoga. It does help a lot. The thumb, for example - I gently pull it to where it wants to stop, in many directions, and then pull just a bit more, holding until I feel it release (usually five or six slow breaths). Once it becomes a habit, to be done in any downtime, it really does make a difference. At least it has, to me, as far as pain. Strength - not so much. I still feel that my hands are getting weaker and weaker.

Debbie Laxague

[CLTann]

I started on Arimidex and experienced joint pain, then switched to Femara. It has been about a year now and no severe discomfort. I do exercise and get massage, which seems to help a great deal. My present major problem is bone density loss. After trying Fosamax for several weeks, stomach discomfort set in. I am now in the monthly doses of Boniva. No problem so far. On AI, try exercise, garden work, walk, massage and chiropractor. Best luck to you.

[sassy]

After being on Arimidex for over a year with significant joint pain (especially right hand thumb and little finger), my GP and Onc started changing other meds to see if they could lessen side effects. My GP changed me from a low dose diuretic (for BP) to Lasix. At that point, Lasix was the only variable in meds. In less than a week I began to see a change in joint problems. I now have some stiffness especially after being sedentary, but it has improved by at least 75%.

I know there is no data that indicates Lasix or another diuretic being used in this manner--but remember we are the early users of AI's and are the ones uncovering side effects and possible side effect treatment. At this point I know of only one other lady who showed this same improvement on Lasix, but she had also changed another med at the same time so could not be certain that improvement could all be attributed to Lasix.

I have been fortunate that my onc(s) have been progressive and prescribed outside of standard protocol. Early on, my onc put me on Lupron and Zometa, both which have just had studies released showing the benefit of each in terms of recurrance. While Lupron is used for ovary suppression in hormone positive BC, Zometa is beneficial for all pathologies.

So perhaps the use of diuretics like Lasix will prove at some point to be beneficial in the treatment of side effects with AI's. We may discover that fluid contributes to the joint stiffness. It certainly seems to have worked for me.

I would be very interested in hearing from anyone else who has seen benefit, or from anyone who tries this option and their subsequent results.

[Rich66]

Ah...I remember my mom reporting AI joint issues to her previous onc and him seeing no possible correlation. After so many postings similar to this..I'd love to kick him in the arse.

[Hopeful]

Thanks to all for your responses! Pooling information is so helpful. I do exercise pretty regularly, walking 45 minutes a day on my treadmill at 3.2 mph on a no. 4 incline (out of 10) around 4-5 times per week. My wrist gets a little work out from my knitting. I work a "desk" job, though I do get up and walk around the building when I need to confer with co-workers rather than phone or e-mail them. I get stomach problems from the asprin and asprin like NASAID's, and think tylenol is too hard on the liver, so I stay away from those meds for this issue.

I went back to the Arimidex last night, and, already, I see a HUGE difference: NO ankle stiffness this morning, and the wrist is 50% better. It will probably be 100% by tomorrow. This is the same kind of recovery I saw from the Arimidex symptoms when I switched back to Femara last year. I am thinking there is just a toxicity level for each of these drugs that builds up until I hit the wall. I am going to talk to my onc at my next visit about continuing to alternate between the two as a strategy to get through 5 years of tx.

Sassy, I am also intrigued by the "Lasix phenomenon" you described, and would be interested to hear from others with a similar experience as well.

I am glad that so many of our members here have found ways to deal with these issues, and appreciate your sharing them.

Hopeful

[KristinSchwick]

Hopeful,
Thanks so much for starting this post (from 4 years ago). I have been on femara for about 5 months. The first month was horribly painful- all in my hips (coincidentally where my biggest bone met is). Then the pain went away and I had several months that were great, but now the pain is back again and I'm not sure if it is joint aches from the femara or if it is my bone met growing again. It seams to be more prominent on the side where my met is, however alot of the joints in my body ache.

Advice or suggestions?

[Debbie L.]

Sorry to hear you're having pain, Kristin.

If it's the AI, these are things that women have said helped them (easy enough to try):

Stretching kinds of exercise (yoga, tai chi, etc)

Any kind of exercise.

Vitamin D supplementation

Ibuprofen or an rx for Celebrex

Switching to a different AI (As Hopeful found, it doesn't seem to be that one causes less pain than another but more that simply the switch makes a difference -- although some women make one switch and are good for the duration, rather than having to toggle back and forth)

Who can add to the list?

Is the pain all the time, or more severe when you first get moving from being still?

Debbie Laxague

[Laurel]

Kristin,

I think if you are concerned I would not hesitate to whine to my Onc and beg a scan to be sure it is not a met growing. Then, if found to be all clear, I suggest a couple of things in addition to those cited already.

I am hanging on for the full 5 years and most of the time I just deal with the various aches and pains and do not think too much about them. My knees are a mess now, however. Recently my left knee has been swelling and osteoarthritis was diagnosed. It seems from my research that osteo is exacerbated by A.I.s. Regardless the last thing I wanted to do was take something like Celebrex which can be wicked tough on the GI tract and I have enough trouble with heartburn (kept at bay with probiotic powder in water daily). I did some research and found that Tarte Cherry and Bromelein really help with osteoarthritis. I ordered Tarte Cherry extract caps from Swanson Vitamins and Bromlein (made from pineapples). They along with glucosimine have worked wonders. I have to remain on them or my knees will get warm to the touch and swell again, but as long as I take them I remain relatively painfree and without swelling. I have a little over a year to go with the Femara and hope to finish the treatment. I cannot imagine I will continue beyond 5 years.

Hang in there!