[BeckyS]

Avascular necrosis (AVN)

by BeckyS on Sun Oct 25, 2015 2:56 pm

Hi,

I am starting Revlimid without dexamethasone in a couple weeks due to a quickly caught relapse.

I can't take the dex because of the accompanying avascular necrosis (AVN) in most of my long bones from long term use (over a 17 year time span) of dex in chemo, autologous stem cell transplant (ASCT), and clinical trials.

Has anyone else had issues with AVN?

[Rneb]

Re: Avascular necrosis (AVN)

by Rneb on Sun Oct 25, 2015 9:08 pm

I've no experience with Avascular N, .....and I take Revlimid w/o Dex ( lots of GI problems due to dex),...but Good Gawd, Lady----Congrats on 17 years !!

What is ( or has been ) your secret ??

I'm worried about getting to 5 years--and you are whistling around 17 !! ??

I hope your bones have healed from the last AVN.
There are/ were a couple of posts made last year by folks dealing with AVN.
Maybe a search will help.??

Good luck.

[JimNY]

Re: Avascular necrosis (AVN)

by JimNY on Mon Oct 26, 2015 2:11 pm

Hi Becky,

Welcome to the forum. Like Rneb, I'm very impressed that you were first diagnosed almost two decades ago. Wow!

Sorry to hear about the bone issue you've had. Avascular necrosis is sometimes called osteonecrosis, particularly when it occurs in the area around the jaw, so it may help in your searching for information if you also use that term.

I myself have not experienced avascular necrosis, but there have been a few discussions here in the forum on the subject (and/or osteonecrosis). Maybe some of them will be of help to you. Here's a link to them.

Was your avascular necrosis treated in any special way? Or was the "treatment" simply to take you off of steroids?

I hope the Revlimid gets your myeloma back under control. Good luck!

[Richard Beach]

Re: Avascular necrosis (AVN)

by Richard Beach on Wed Oct 28, 2015 8:43 pm

I am a nine year survivor with multiple myeloma and my only treatment was with Revlimid, dex, and Zometa. I got osteonecrosis in my lower jaw from the Zometa. I was fortunate that I connected with a wonderful periodontist who treated it with laser treatments. After about six months, it all cleared up with no problems since. I did stop the dex and Zometa after only using them during my first year.

Now I am only on Revlimid, and doing very well, and can basically do whatever I want to.