Hi, I just found out that the high dose dexamethasone (40 mg iv) has caused serious lack of oxygen to my bones and some of my bones are dying. I have Necrosis of the femoral head in my hip/leg. I was having some sharp pains in my left hip/leg and had an MRI. There is nothing that can be done to reverse this. They are removing the Dex from my treatment plan. The bone in my leg/hip might just collapse. I took the Dexamethasone for about two years with Kyprolis and Revlimid. I was diagnosed in July 2021. Spent 30 days and in the hospital and left in complete remission. I had a SCT in Jan 2022 and have been in remission. I had a PET scan in Oct 2023 and was given a great bill of health. The PET scan even mentioned my bones were good showing only normal wear and tear as an MM patient (basically). I thought the PET scan showed bone damage and come to find out I am being told it does not. Which I find strange since the notes from the PET scan mention my bone health being pretty good. My Doctor says it looks like it most likely took 2 years to get to this point. I was also told checking bone density is not part of the MM protocol. The MM treatment has literally caused exactly what it was supposed to prevent from happening to my bones! I don't know at this point if other bones have a lack of oxygen and are dying too. This was super disappointing especially because I would figure checking my bones for damage /decay would be a priority and not just for active cancer. My Doctor is ordering now a DEXA Scan of my whole body as of today. I spent two years at MD Anderson and I am now at Baylor. Like you (I am sure), I have spent just under 2 million so far on treatment and basically almost the entire time I was getting MM treatment my bones were decaying anyway. Medical bills paid through insurance but this is around my bill paid after discounts. I definitely feel like this is a huge fail, plus I am at the hospital every week sometimes 2 days a week for years now. I still work and raise my son. It is a lot to manage all together but I do it and nothing all this time has lead me to believe my MM treatment wasn't going excellent. Definitely had no idea the Dex was stopping the oxygen from reaching my bones and they started dying 2 years ago! I see a bone doctor in a few weeks to see if there are any next steps I can take. Possible a hip replacement but it could be in other bones and now I suppose I'm replacing bone wherever I can, if I can. Which sounds a whole lot like what I would be doing if I did not go through all this MM treatment. A week ago if I made a post on this website, I would be raving about the care I received and how well the treatment has gone. My advice is to ask for MRI's for anything even if your bone just feels a little tender. So far, it is the only scan that shows if your bone is dying / decaying. I have not had the Dexa scan yet so I can't speak to it. I looked up at the NIH website steroid complications and when you get to their very LONG list of all kinds of complications MM is the very FIRST one listed and this is exactly what I have ( Necrosis of the femoral head Multiple myeloma patients) I honestly do not understand why this is not being checked especially since it is #1 on NIH for complications out all the complications to be listed. It has to be happening to a lot of people with MM. Look for Table 1 Chart - You'll see this info there. Musculoskeletal system Necrosis of the femoral head Multiple myeloma patients 16.7 mg/kg × 56 days (median) 7% 11.1 months (median) You can go there by using this link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8298044/ I am definitely venting here! Has anyone else had the Dex cause any bone problems and if so how was yours discovered and was there anything treatment? Thank you, Kathy