Current diagnosis is Amyloidosis and multiple myeloma

Has anyone diagnosed with type AL Amyloidosis had success after treatment with Darzalex? If so, how many treatments?

@bensondexter, I'd like to invite @1nan and @beckyoutlaw1115 to this discussion as they both have discussed Darzalex treatments previously on Connect.

@bensondexter, while we wait for some input on Darzalex, do you feel comfortable sharing how you are feeling? Do you have any other concerns other than the specific treatment?

What is your D3, K2 and Magnesium levels?

Hi. Apologies for coming into this conversation wiithout having details about your situation. But I can tell you that I startedreceiving Darzalex in January. Following established protocol I completed a series of 8 weekly treatments, and this Thursday I will get the 8th of 8 biweekly treatments. From there on treatments are monthly. Initial side effects were bone, muscle and joint pain along with other miscellaneous ones. I learned that taking over the counter Claritin majorly reduced those side effects. My myeloma numbers have dropped dramatically. I look forward to my August appointment at Mayo to learn what this will look like going forward. I was interested in hearing from others who have had this treatment. I am open to phone conversation on this or other topics.

I am having tremors in the hands, arms and legs which leads to falling down. I was falling before i started Darzalex. No side effects that I can identify after 8 weeks of taking Darzalex. Does anyone else have tremors and falling issues with Amyloidosis?

I don't know but will try to find out.

I have Myeloma and take DarzaI . I have experienced shakinesss NO FALLING I also experience nausea but nothing happens but a towel is always nearby

I also have significant side effects that limit activities as well as annoyances, like loss of taste; nausea and poor appetite; constant fatigue and weakness; needing to briefly stand in place on standing before moving forward; and the usual things that come with high doses of steroids. But mental energy is good, no "shakiness" or falling, and I have been successful at "pushing through" to keep living life. Looking forward to seeing if lower doses are possible moving forward. Weeks between treatments have maintained same level of side effects, no decrease.

In 2010 I became very sick and lethargic having to go on medical disability from my current job. I live in Prescott, AZ area and bounced around for months to different Doctor's for my many ailments. My wife, rest her soul, pushed until I was excepted by MAYO to be under their care. A local Dr. who works with MAYO finally drilled in to my hip bone and had the sample diagnosed as "Amyloidosis". My wife also forced thru the VA who finally determined all/most of my ailments due to "Agent Orange"(this took 6 months and having to send six duplicate copies. This was before they started getting their act together.). I was finally seen by two MAYO Dr's and received extensive chemo so it would be in remission. There is no cure, the damage is done and may increase in small increments. A few months after chemo I was told three alarming things about my treatments. 1) The life expectancy was normally 6 mo's, been 8 yr's ; 2) That I would get Neuropathy that would go away after 6 mo's, or not at all. Of course mine has been with me since chemo and increasing. 3) Sex drive wont be maybe for 6 mo's, or OK, then start to return or not. Of course since 2010 it hasn't revisited. BUT, MAYO has done right by me and I ain't look'in up at roots. They have been Angels in my pocket.

Hello @tlcox49. You are facing a lot of symptoms and diagnoses. I am inspired by your positive outlook despite those diagnoses and your exposure to Agent Orange. While we wait for some of the Amyloidosis members to offer their insights, you may find the following peripheral neuropathy discussion worth your time, https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/. It is a bit of a long discussion, however, if you choose to join it you will meet JohnJames who was also exposed to Agent Orange.

@tlcox49, despite the unpleasant side-effects of chemotherapy, how is your amyloidosis currently doing?