Hello,
I'm hoping to interact with those who have needed to stay on Dex long-term at low levels (2mgs or less) or hear from experts on the topic.
My Uncle was on very high levels for many months but we've not gotten him down to 2mgs and it seems that going lower is not an option to do - safely. He had regrowth immediately after surgery, that said he's got tumors in his head taking up space, and also at this point his adrenals are shot.
I imagine that just like any drugs the lower the level, the less detrimental they are.
Is anyone on 2mgs or less - indefinitely?
Thanks :)
My husband has been on Dex pretty long-term, at least continuously since his second resection in Feb. 2018. He has gone up and down in dose depending on treatment/inflammation and we have tried to taper his dose several times. His tumor is is also on the larger side and we are considering a de-bulking surgery at this point since he's lost a lot of muscle and can't seem to get past the 1mg dose. His doctor said if he cannot get off of Dex, surgery should be considered. However, we've also incorporated some meds off-label, including Celebrex, acetazolomide and supplements like Boswellia, Bromelain and others to help lower his dose.
ReplyDeleteI wasn't aware of this but at his last appointment, his doctor gave him a referral to see an endocrinologist to help get him off of the Dex. I wish we had done that sooner! Perhaps that's an option to explore? We are waiting on his appointment but we've been told that they can prescribe other steroids that are less harmful that will also help taper his Dex dose. It's my understanding they will also run a few other tests to determine the full extent of the damage from the long-term steroid use, including bone/muscle loss, etc.
Is your uncle on Avastin? My husband was on Avastin up until August and is now getting a treatment break. Avastin can sometimes replace a steroid or help lower the dose (we weren't super successful with this) but then there's the other side effects to consider.