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I am experiencing progressive neuropathy while on Darzalex Faspro for HRSMM. I have completed phase 1 with 8 injections. Now on every other week and have completed 3 injections. This last one has really increased the burning and numbness in my legs. Has anyone experienced this?
Answer Summary
Members discussed neuropathy while on Darzalex Faspro, with some experiencing worsening symptoms and uncertainty about whether the drug or the... Read more
@A MyMyelomaTeam Member
Hi Paula,
When I'm home, I disable Cellular in my Phone to only be using WiFi. This helps quite a bit.
For about 2 months now, I've been taking Dr Best - Benfotiamine 150 + Alpha-Lipoic Acid 300. I take two daily for Benf-300+ALA-600. This is in addition to everything else I continue to do (testing dropping out items to see what's really needed)
I've noticed an improvement in my neuropathy. Some days, my feet are very good through the day. I've stopped wearing the RF-shielding gloves (they only helped a little).
I have noticed that eating Carbs at night with dinner will have a worse effect on my evening stinging/burning. I was drinking an Organic Pomegranate Juice for the last 2 years. Then recently I added an Organic Beet Juice with my dinner as well. The two together made things much worse, flaring up my neuropathy at night.
Quality food Carbs during the day and morning are very helpful to supply energy but at night they were causing me trouble. Avoid Junk food carbs at all times. Healthy Complex Carbs and lower glycemic index are good and important to have.
My numbness affects my balance. I have to be very careful. It is slowing me down.
I've been on Darzalex for a long time. It does cause some neuropathy. My specialist at Emory has me taking super b complex daily with alpha lipoic acid 600 mg from Amazon. They do seem to slow the neuropathy. So ask your doctor about them. I can tell when I don't take them.
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