AI and Osteonecrosis of Knee

Options
ElizabethAnne
ElizabethAnne Member Posts: 21
edited January 2015 in Hormonal Therapy - Before, During, and After

Hi,

I started taking Femara 3 years ago.  About 1 1/2 years ago, one of my knees starting hurting quite badly out of the blue with no prior knee pain or knee injury.   I was finally diagnosed as having Spontaneous Osteonecrosis of the knee (with no known cause).

Fast forward to a year later, my other knee has now begun to hurt in the same manner.

I am highly suspicious that Femara is causing this "bone death" in my knee as I had no prior issues with my knees.   Has anyone else heard of this before?

Many thanks

· Share on FacebookShare on Twitter

Comments

  • leggo
    leggo Member Posts: 3,293
    edited August 2014

    Hi Elizabeth. Sorry about your pain. I have never heard of necrosis in other skeletal parts of the body other than the jaw so my heart skipped a beat when I read your post. Had all kinds of nightmarish thoughts in my head because I'm terribly frightened of jaw necrosis and know what the treatment for that entails. I read up a little on osteonecrisis of the knee and it and its treatments aren't remotely the same, thank gawd. Looks like it's not all that uncommon and fairly easily treated depending on the stage. Looks like worst case scenario....knee replacement. Some drugs can surely wreak havoc with our bones.

    A link for some additional info:

    http://orthoinfo.aaos.org/topic.cfm?topic=a00225


    · Share on FacebookShare on Twitter
  • ElizabethAnne
    ElizabethAnne Member Posts: 21
    edited August 2014

    Leggo, 

    Thank you for your quick response!

    I am relieved to hear that you have not heard of anyone else on Femara with this type of osteonecrosis.  It must have been just a coincidence of timing that this happened shortly after I started Femara.

    Thanks, also, for the link to the osteonecrosis page--a lot a good information there.

    Elizabeth

    · Share on FacebookShare on Twitter
  • leggo
    leggo Member Posts: 3,293
    edited August 2014

    I got to thinking a little later that maybe all of the women on AI's with horrible knee pain are actually suffering from "osteonecrosis" and it just hasn't been diagnosed as such. I did read somewhere that osteonecrosis would eventually lead to osteoarthritis, which surprised me because I would have that necrosis would be the more serious of the two. Hmmmm...lots diagnosed with osteoarthritis after AI treatment. Your post made me realize I've still got a lot to learn.

    · Share on FacebookShare on Twitter
  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2014

    I'll have to look in to it more, but osteonecrosis (of the jaw) is associated with bisphosphonates such as Aredia. Many women who take AI's also get bisphosphonates for bone strengthening. Will check it out as I do have knee pain, but I had it before AI's.

    Caryn

    · Share on FacebookShare on Twitter
  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2014

    ElizabethAnne,

    I did some research and can't find any reports of AI's causing osteonecrosis on their own. Only when couples with bisphosphonates, to offset bone loss, does it turn up as a se, with the jaw as the site. I hope you're feeling better soon.

    · Share on FacebookShare on Twitter
  • cowgal
    cowgal Member Posts: 833
    edited August 2014

    I was just taken off of Femara last Thursday due to severe pain in both knees that started about 2 months after starting arimidex after being on tamoxifen.  I have know been through all of the AIs with no relief and that is why my MO took me off them after 4 years (including the year on tamoxifen).  He told me that I would start to see some improvement in 2 to 4 weeks.  Currently, I can not straighten either knee fully and have not been able to do so for some time now.  I don't know anything about osteonecrosis so I guess I had better get a little educated on it in case my knees do not improve so I can mention it to my MO.  Whether mine turns out to be pain that goes away now that I am off of it or if it is something else, I am convinced that the AIs have a hand in it.

    · Share on FacebookShare on Twitter
  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited August 2014

    cowgal,

    Yes, the AI's can definitely cause joint pain and it can be severe as you've described. Hopefully, it's not any kind of osteonecrosis. I've combed the net and can't find any association between AI's and osteonecrosis, unless one is also on a bone strengthener, bisphosphonate. ONJ (jaw) is a known se of that, but not high incidence and it is the bone strengthener, not the AI that is responsible for osteonecrosis. Chances are your pain will diminish and you don't have anything more serious. Take care. 

    · Share on FacebookShare on Twitter
  • Saskacres
    Saskacres Member Posts: 2
    edited January 2015

    Well, this is interesting. I started on Arimidex in November of 2009. Because of thinning bones, I then had 6 treatments of the bisphosphonate Zometa at 6 monthly intervals. By the summer of 2012 I was noticing some stiffness on the inner side of my left knee after walking on the treadmill in the gym. Then, following a cross-country ski trip over Xmas, 2012, I developed excruciating pain on the inside of the knee. To make a long story short, by x-ray and MRI, an orthopaedic surgeon diagnosed me with SONK (Spontaneous Osteonecrosis of the Knee). I did ask him if this was similar to the osteonecrosis of the jaw that one can rarely develop with the bisphosphonate Zometa. But he said no. I still wonder.

    Those who have osteonecrosis of the knee will be happy to hear that (keeping fingers crossed), my SONK seems to be slowly resolving, as the orthopaedic surgeon said it would. I am hopeful that I may be able to eventually regain full use of my knee. Or something close to that. Would be great to get back into hiking, running, and X-country skiing again. I have had to take a hiatus of several years from "leg sports" and am only now starting spin classes in the gym again. My knee now tolerates gym work and cycling quite well.

    At this point I would like to say this is my first post to any of these Discussion Boards. I have been "lurking" for a long time. I would like to say how much I appreciate the generosity and help the kind ladies (and some men) provide on these boards. After all, we are all in the same boat with fear of, or actual, recurrence. The discussions have been of great comfort to me over several years. I now hope to post more and that I can provide help and comfort to others, in my turn.

    "You only have enough stomach fat for a B Cup!" (Plastic surgeon prior to double mastectomy and reconstruction)

    • Initial Dx March 2009
    • Surgery 04/20/2009 Mastectomy (Both); Lymph Node Removal (Right); Reconstruction at surgery - DIEP (right), something else (left)
    • Dx (Right) IDC, 3.6 cm, IIB, Grade 3, 2/11 nodes, ER+/PR+, HER2+
    • Dx (Left - Surprise!) IDC, 1 cm, Grade 2, ER+/PR+, HER2-
    • Chemotherapy Summer/Fall 2009 FECx3, DOC+Herceptin x3
    • Herceptin - 1 year
    • Radiation Therapy Dec/2009 External 25 x
    • Hormonal Therapy Nov 2009 5 years Arimidex
    · Share on FacebookShare on Twitter

Categories