My husband has been on Ninlaro (ixazomib; 3 weeks on, one week off) and Darzalex (and dex on the day of the Darzalex infusion) for the past six months. He started Darzalex infusions in December, and is now getting the infusion once a month.
He started having low blood pressure and dizziness about two months after starting the Ninlaro. Some of his heart medications (which include medications for high blood pressure) were adjusted to lower dozes by the cardiologist to help deal with this. Things seemed to get progressively worse with each cycle of Ninlaro, getting a little better by the end of the week off.
He started having fainting episodes with bad falls, which first happened at night when going to the bathroom (getting up quickly from lying down). After more adjustments to medications and some ER visits later, the cardiologist sent us to a neurologist, who tested and diagnosed him with some level of autonomic dysfunction (which affects the autonomous nervous system), caused by neuropathy. This affects how well the body adjusts blood pressure when getting up from sitting or lying down and also many aspects of the digestive system (horrible constipation with pressure and loss of appetite, followed by uncontrollable diarrhea). Part of the tests also showed neuropathy in the feet and toes.
Over the past weekend (last week of a Ninlaro cycle), he was losing consciousness every time he got up, and we were by his side the whole time to make sure he doesn't fall.
As of Monday he is off the Ninlaro. His M-spike went down from 1.0 g/dL to 0.8 g/dL (10 to 8 g/l) after the first two cycles with Ninlaro, and then stayed stable at 0.8 g/dL since then. The myeloma specialist wants him to stay on Darzalex and recover for several weeks before introducing anything new. The myeloma is currently under control. The myeloma specialist said it's pretty rare for the treatment-induced neuropathy to affect short nerves (as it does with autonomic dysfunction); usually long nerves are affected (in peripheral neuropathy).
I haven't been able to find anything about autonomic dysfunction in the context of myeloma, so thought I would report it here and see if anyone else can add to a discussion about it.
I guess it's time for the next chapter in this journey for us. It's been 17 months of multiple treatments slowly making our way from an M-spike of 2.9 g/dL to 0.8 g/dL, with many setbacks, ER visits, and new medical conditions to become familiar with along the way. Got to stay positive and keep fighting the good fight.
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Alizabeth - Name: Alizabeth
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 61
Re: Ninlaro, neuropathy, fainting, and autonomic dysfunction
I have just finished the second three-week cycle of Ninlaro, Revlimid, and dexamethasone and am also suffering from low blood pressure. I do sympathise with you and your husband with the symptoms you describe being far worse than mine at present.
Half way through the first cycle I developed an all over itchy body rash for which I ended up in hospital but managed to finish the cycle. This time an accompanying drug has been omitted (antibiotic, I think) and Revlimid dose lowered to 10 mg. Ten days into it I developed severe vertigo, particularly at night, causing falls on visiting bathroom at night. Low blood pressure then found to be adding to the problems.
I am booked for a PET CT scan next week to see if this has been working for me. I see my oncologist on September 4th and decide what to do next.
Half way through the first cycle I developed an all over itchy body rash for which I ended up in hospital but managed to finish the cycle. This time an accompanying drug has been omitted (antibiotic, I think) and Revlimid dose lowered to 10 mg. Ten days into it I developed severe vertigo, particularly at night, causing falls on visiting bathroom at night. Low blood pressure then found to be adding to the problems.
I am booked for a PET CT scan next week to see if this has been working for me. I see my oncologist on September 4th and decide what to do next.
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Whisper2003 - Name: Whisper 2003
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: September 2017
- Age at diagnosis: 64
Re: Ninlaro, neuropathy, fainting, and autonomic dysfunction
Thank you for posting this! I was researching this symptom for my mother. She's 78 and was diagnosed with myeloma 4 years ago. Treatment has been going relatively well and she is in "remission," but since March she's been having wild blood pressure fluctuations. In the morning she has problematic low blood pressure episodes, and throughout the day she gets episodes of dangerously high blood pressure, including when she's lying down (supine).
She has been treated for hypertension for over a decade and her blood pressure medicine has been the same until these problems began, and other than multiple myeloma, she has always been a very healthy, active person.
As for the myeloma, she was originally treated with bortezomib (Velcade) injections, then she was on Revlimid for some time, and then last fall she was switched to Ixazomib (Ninlaro). At first she was taking a lower dose (I don't know the exact amount off hand), and then she was switched to a higher dose. She takes the Ixazomib once every other week. When she was started on this higher dose, she began having the blood pressure fluctuations, and also severe intestinal side effects. She has found the intestinal side effects are reduced if she greatly restricts her carbohydrate intake.
She has seen a cardiologist, but he has been sort of unhelpful, and she is in the process of getting a second cardiology opinion. In the meantime, her oncologist thus far has insisted her blood pressure disregulation is not related to Ixazomib, but I am not sure that's the case. I plan to ask him about the possibility of it causing autonomic neuropathy, as it seems it's the same root cause for the digestive problems, and seems possible based on some thick internet digging. It seems to me she might be suffering from supine hypertension-orthostatic hypotension of some sort secondary do autonomic neuropathy affecting her body's ability to regulate her blood pressure.
Anyway, thank you for posting! It helps to have other people's experiences to draw from, and I wanted to let you know my mother was having similar problems.
She has been treated for hypertension for over a decade and her blood pressure medicine has been the same until these problems began, and other than multiple myeloma, she has always been a very healthy, active person.
As for the myeloma, she was originally treated with bortezomib (Velcade) injections, then she was on Revlimid for some time, and then last fall she was switched to Ixazomib (Ninlaro). At first she was taking a lower dose (I don't know the exact amount off hand), and then she was switched to a higher dose. She takes the Ixazomib once every other week. When she was started on this higher dose, she began having the blood pressure fluctuations, and also severe intestinal side effects. She has found the intestinal side effects are reduced if she greatly restricts her carbohydrate intake.
She has seen a cardiologist, but he has been sort of unhelpful, and she is in the process of getting a second cardiology opinion. In the meantime, her oncologist thus far has insisted her blood pressure disregulation is not related to Ixazomib, but I am not sure that's the case. I plan to ask him about the possibility of it causing autonomic neuropathy, as it seems it's the same root cause for the digestive problems, and seems possible based on some thick internet digging. It seems to me she might be suffering from supine hypertension-orthostatic hypotension of some sort secondary do autonomic neuropathy affecting her body's ability to regulate her blood pressure.
Anyway, thank you for posting! It helps to have other people's experiences to draw from, and I wanted to let you know my mother was having similar problems.
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