Objective tests for joint pain on Arimidex
I've been on Arimidex for 2 1/2 years and I have a lot of knee pain. I am trying to get a doctor to diagnose the problem, whether it is from the Arimidex or some other problem, and I am having trouble finding information on how Arimidex causes the arthralgia. Is it something that will show up on imaging tests (MRI)? Is it just a subjective symptom, with no objective evidence? Initial x-rays show very little osteoarthritis, so I am wondering if an MRI might help distinguish between AI side effects and other causes of my pain. Does anyone have any ideas on this?
Comments
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Hi Funny Farm,
I've also been on Arimidex for 2+ years now. Like you I have a great deal of knee pain, to the point of debilitation. The pain clears after I've been off the medication for a week or two and resumes within a couple of days of restarting the medication so I have no doubt the Arimidex causes it.
I don't know if you've come across this article:
http://annonc.oxfordjournals.org/content/early/2013/03/06/annonc.mdt037.full
It's a fairly recent paper on AI induced arthralgia. To summarize, they don't know the mechanism that produces the pain and they don't know how to treat it. At least they are recognizing it exists and that compliance suffers because of it.
Personally I have found the use of Vitamin D, Fish oil, Claritin, and Acupuncture in combination to be the most helpful. Exercise unfortunately does not reduce my pain, rather it increases it.
I'm persisting in my use of the medication but it really is a challenge given the reduction in my QOL. -
Thanks, kmpod. That article is very good, and I see that there are numerous references at the end that have full text available. A lot of study I have yet to do. First thing I saw in the article was that knees are common sites, which my onc doc said wasn't common. I found an article abstract on Pubmed yesterday that has some basic info about a study using short-term small dose Prednisolone for this with some success. http://www.ncbi.nlm.nih.gov/pubmed/22641670
Considering that I have an orthopedic surgeon who wants to do surgery on my knees to "fix" this problem, I need to do my own research for sure before I get rushed into something that might not work. I find that if I stay on a prescription anti-inflammatory (diclofenac works for me) that my symptoms are tolerable if I don't over-do, but gradually worsening. And, exercise does not help me, either! I will try some of your helps to see if they work for me also. Thanks again for responding.
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Hi Funny Farm,
I had found the article you referenced too. I've tried the low dose prednisone a couple of times, just prior to going on vacation, and it did help somewhat, but not enough that I could forgo my other methods of pain relief. The impact also did not last the month that the article indicates.
So, for me it isn't a miracle, just another arrow in the quiver.
By the way, I gave my GP a copy of that article and he prescribed the prednisone with no argument. -
By the way, have you tried an Arimidex vacation for a couple of weeks to see if it has any impact on your pain?
If your pain is reduced while "on vacation" I'd be very leery of undergoing surgery as a proposed remedy. -
I plan to transition to an AI soon so will be watching these threads for information and issues to consider.
A "drug holiday", as suggested by kmpod might be a good experiment for funnyfarm. Keep in mind that surgeons will almost always advocate operating as the appropriate intervention (since that is what they do!)
Have either of you thought about trying one of the other aromatase inhibitors? Perhaps a different one would be better tolerated. -
I developed sudden and severe right knee pain after a year on Arimidex. I had considerable joint pain prior to this, but it always improved with movement. I had static x-rays done and was referred from my primary care to an orthopedic surgeon. The x-rays showed modest arthritis, appropriate for my age, but no overriding physical reason for the pain. I received a cortisone injection into the knee, but switched back to Femara about 60 days after the injection. By the time the cortisone wore off at about the 6-8 month point, I did not have the knee pain any longer. One thing the ortho doc said was that strengthening the quad/thigh muscles, as well as the muscles below the knee, helps keep the joint aligned properly and supported in that proper position and that this type of pain is less likely to happen if the muscles are a bit stronger. Interestingly, I had knee surgery many years ago on the left knee, and when this right knee pain started I was worried the left would start to have pain as well but have not had any issues with it.
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Hi vinrph,
At my last visit with my MO I suggested to him that perhaps a switch to Femara might be of help.
He dismissed the idea, saying that in his experience the Femara produced more joint pain that the Arimidex. I didn't push it this time but I will if things deteriorate further.
SpecialK - I've been doing Tai Chi in an attempt to build up the muscles around my knees. Some days I manage it fairly well but other days i can't. I just do what I'm able to. I've also found that if I use walking poles I can stretch my walking distances a bit further.
The odd thing about the pain is that it travels. Sometimes my right knee is worse than my left then, a week or so later it could reverse. At times it feels like bone pain (the Claritin seems to do a good job with that) but more often it feels like my tendons have tightened right up. I'm never sure quite how much weight my knees will take and that makes uneven terrain a challenge.
The most depressing part of this whole issue is that I need to exercise more and I need to lose weight but I'm simply not able to due to the side effects of the AI. It's a big Catch 22. -
I think I'm a perfect example of how an AI exasperates a dormant, pre-existing joint problem and a solution can be found w/o stopping or switching meds. I'm on aromasin and had intense ankle and hip pain on my left side start within a very short time of starting. Almost no pain ever on the right. Had xrays of both and only mild arthritis showed up in my hip. I walked and jogged counter-clockwise around a loop that sloped downhill to my right most of the way, something I had done for several years. Thinking this might be a problem from pronation and mild scoliosis, I switched directions and the pain gradually disappeared. It will return if I go hiking on uneven surfaces. My next hiking and running shoes need to correct for pronation and I think I can avoid this reoccurring. I thought I was going to have to give up jogging.
Of course there always has to be something else. I'm fighting trigger thumbs and fingers now. So far keeping the hands warm and straight when sleeping and as much as possible in the day is helping. -
SpecialK raises a good point about developing the muscles. Have you considered physical therapy? They deal with knee problems all the time and can recommend targeted exercises for your situation. When I had knee problem 10 years ago, the PT first assessed my gait and determined that my hodgepodge of exercises was actually making the problem worse--my outer thigh muscle was more developed than the inner. So the first step was to give me exercises to get the muscles to work together properly. (I did those at home daily for two weeks). Then he added strengthening exercises (again, did those at home with periodic check-ins). The PT should be able to recommend other exercises that could help. Like kmpod, uneven surfaces made my problem worse, so the PT's advice was to walk only on flat paved surfaces until my muscles developed. I did light bike-riding (10-15 mins) to warm up the knee. The PT might suggest other exercise, like swimming, to help with overall health and weight loss without harming the knee. I'm not a doctor (or PT) but this might be worth trying before attempting surgery. (besides, you'd probably get sent to PT post-surgery anyway) -
doxie - I seem to have issues with triggers too and used stick to itself tape to immobilize the thumb but allow it to bend a little. I used a few inches of this tape - and could have it on during the day and still do everything, but without pain.
http://www.cvs.com/shop/product-detail/CVS-Gentle-Tape-First-Aid-Wrap-1-Inch-X-22-Yards?skuId=209995
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kmpod I too am in the Catch 22, with needing to lose weight, but not able to exercise. I've developed pre-diabetes since my cancer treatment finished and I started the AI, so exercise is really important. I've taken several "vacations" from Arimidex, but my onc doc will allow only a week off. It did help, but not a total cure for the pain in only a week. My most effected knee has also switched from the left in the beginning, to the right now. I've also tried all the other AI meds, with little difference, and some other side effects that weren't pleasant. My onc doc seems obscessed with switching me to Tamoxifen, but I'm resisting that due to the potential of more serious side effects. peggy_j I will likely have to try physical therapy before any surgery is considered (insurance) but I've never had any benefit from the therapists in our small town, and occasionally have had harm done, so I unavoidably will go in with a poor expectation.
And, my knee pain gets so much worse if I walk/stand on hard flat surfaces like concrete floors in Wal-mart, rather than walking around my property perimeter with all it's uneven surfaces. With all of your input, I am not likely to rush into surgery for this, especially since I have not been able to find any reference online to the knee condition the ortho doc called "tongue lesion" of the knee. If any of you find a reference to this, or know of it, could you post for me? His description made sense, but that is all. I am still wondering if anything shows up on an MRI to indicate the source of the pain if it is a side effect of the AI. He said the tongue lesion would not show up, and injections would not help it. I think I saw dollar signs flashing in his eyes as he talked!
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Hi Funny Farm,
Yup, it sounds like we're in the same boat. Sigh.
FWIW, I took my two week vacations and then told my MO. I just did. I didn't ask. However, I did tell them subsequently and they weren't unduly perturbed.
My MO suggested Tamoxifen too. Like you I'm taking a pass on that. There is a LOT of cardiovascular history in my family and the potential side effects of the Tamoxifen scare me much more than those of the AI's. -
I have been on Arimidex for 5 years now, side effects started after 6 months. First, all over arthritis, so bad I could barely get out of bed and sometimes couldn't hold the steering wheel to drive. Finally after reading forums my husband suggested I try high doses of Vitamin D3. It changed my life. Took a few months but almost removed the arthritis. Since then I have had severe hip joint pain, used intensive PT to help it and went back to big doses of D3. Next was wrist (diagnosed as DeQuervains Tendonosis) - cortisone shot worked but only lasted 4 months, changed tennis grip and am able to manage it now. Now having knee problems. I believe using all options combined helps: strengthening muscle, healthy diet (especially anti-inflammatory) and I avoid gluten, and more D3. I believe the biggest impact over my five years has been the D3. Most doctors are skeptical but I have found several studies supporting it and many women who agree. I take 10,000 IU a day when I am trying to up my levels. I have a family member who's doctor put her on 8 times that for a few weeks. It helped us both significantly. Best of luck and don't give up!!!
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Thanks for sharing your experience Lizzy10. Wonderful that you are feeling so much better! Here is one article we have on Vitamin D3 Vitamin D and survival, though not directly to reduction of symptoms, per se. We're interested din hearing other's experiences.
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