Hi,
My wife has relapsed multiple myeloma. She had plasma cells near optical nerves in eyes and in spinal nerves.
We started Revlimid a month ago. Recent eye check revealed that all plasma cells are disappeared in eyes and in spinal nerves too, but ophthalmologist found that she has optic disc swelling (papilledema). A month ago, before we started Revlimid, it was not there.
There are two possible reasons: compression, or intracranial pressure.
Does anyone has similar experience? Local doctors have no experience in treatment with Revlimid since it is not locally accessible to patients. Your opinions are invaluable.
Thank you.
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Re: Revlimid and papilledema (optic disc swelling)
Hello Giorgi,
Sorry to hear about your wife's eye problems.
Is she being treated with any other medication besides Revlimid? For example, is she also receiving dexamethasone?
Sorry to hear about your wife's eye problems.
Is she being treated with any other medication besides Revlimid? For example, is she also receiving dexamethasone?
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Jonah
Re: Revlimid and papilledema (optic disc swelling)
Hi Jonah,
Thank you for your response. Yes, she is taking 40 mg of dexamethasone per week + 25 mg of Revlimid daily. She injected Avastin in eyes monthly to prevent proliferation of plasma cells. It seems it will not be needed anymore thanks to Revlimid, but we have to tackle the papilledema.
Thank you for your response. Yes, she is taking 40 mg of dexamethasone per week + 25 mg of Revlimid daily. She injected Avastin in eyes monthly to prevent proliferation of plasma cells. It seems it will not be needed anymore thanks to Revlimid, but we have to tackle the papilledema.
Re: Revlimid and papilledema (optic disc swelling)
I was diagnosed with multiple myeloma in May 2015 and have been on the VRD (Velcace, Revlimid, dexamethasone) treatment regimen.
I started having vision problems, such as spots and lines, upon blinking. They would soon disappear after a few seconds. The past couple of weeks the spots and lines are constant. I am scheduled for a couple of MRIs for brain and eye views on Thursday.
I started having vision problems, such as spots and lines, upon blinking. They would soon disappear after a few seconds. The past couple of weeks the spots and lines are constant. I am scheduled for a couple of MRIs for brain and eye views on Thursday.
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ronco - Name: Ron C.
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 5/06/15
- Age at diagnosis: 68
Re: Revlimid and papilledema (optic disc swelling)
Hi Ronco,
Thanks for your reply. Unfortunately, my wife had the same last year, a few months after a stem cell transplant. Unfortunately, we detected it late and she almost lost vision in one eye. It was an extramedullary plasmacytoma on the retina. Only Avastin could stop it. However, it just prevents it from proliferating, and monthly injections in the eyes are necessary.
After that, we started Revlimid and, as the doctor told us, all plasma cells disappeared in the eye. However, this papilledema appeared.
Have you been to ophthalmologist? It is easy to look in the eye via angiography. I advise you not to lose time since it progresses fast. It took a month for my wife's retina to be affected.
Thanks for your reply. Unfortunately, my wife had the same last year, a few months after a stem cell transplant. Unfortunately, we detected it late and she almost lost vision in one eye. It was an extramedullary plasmacytoma on the retina. Only Avastin could stop it. However, it just prevents it from proliferating, and monthly injections in the eyes are necessary.
After that, we started Revlimid and, as the doctor told us, all plasma cells disappeared in the eye. However, this papilledema appeared.
Have you been to ophthalmologist? It is easy to look in the eye via angiography. I advise you not to lose time since it progresses fast. It took a month for my wife's retina to be affected.
Re: Revlimid and papilledema (optic disc swelling)
Hello again Giorgi,
It's possible that the dexamethasone may be contributing to the papilledema that your wife is experiencing. One of the possible side effects of dexamethasone is glaucoma, which, as I understand it, can contribute to papilledema. Your wife's optic nerves also may be damaged from the problems she had in the past, which I imagine could make them more sensitive to any glaucoma created by dexamethasone.
The only potential way I can think of that Revlimid could be the source of the problem is through Revlimid's tendency to cause blood clots. This is one of the common side effects of the drug, and it is the reason that most people who take it also take aspirin, or a more powerful anti-clotting drug life warfarin, every day to avoid the possibility of a blood clot.
If a blood clot has formed in the sinus area of your wife's skull, it could be causing the build up of pressure that is damaging the optic nerve. This is a condition known as "cerebral venous sinus thrombosis," and it is one of the things that can cause papilledma.
More frequently, however, the clots that are caused by Revlimid occur in the legs, and, if not caught quickly enough, travel to the lungs, where they cause a "pulmonary embolism". Your wife's case would be the first that I've heard of where such a clot formed in the sinus area. However, that doesn't mean it isn't happening. It just isn't something you hear about often.
At this point, your wife's doctors really need to do two things.
First, they need to relieve the pressure that is causing the optic nerve damage. I believe diurectics (medications that shed fluid from the body), and even anti-inflammatory steroids such as prednisone (which also has an anti-myeloma effect), are used in such situations.
Second, they need to find the root cause of the problem. This will probably require imaging (MRI, PET/CT, etc.) and perhaps a sample of the spinal fluid (this is just a guess on my part; I'm not a doctor). Finding the source of the problem is something that the eye specialists who are seeing your wife should be trained to be able to do, however, so you'll really just have to let them leverage their expertise, most likely working together with your wife's myeloma specialists.
I wish I could offer you more advice, but, as I said, this is a rare complication, so the source of the problem is most likely very specific to your wife's situation.
I hope a solution to the problem is found soon. Please let us know what you learn and if you have any further questions.
Best wishes,
Jonah
It's possible that the dexamethasone may be contributing to the papilledema that your wife is experiencing. One of the possible side effects of dexamethasone is glaucoma, which, as I understand it, can contribute to papilledema. Your wife's optic nerves also may be damaged from the problems she had in the past, which I imagine could make them more sensitive to any glaucoma created by dexamethasone.
The only potential way I can think of that Revlimid could be the source of the problem is through Revlimid's tendency to cause blood clots. This is one of the common side effects of the drug, and it is the reason that most people who take it also take aspirin, or a more powerful anti-clotting drug life warfarin, every day to avoid the possibility of a blood clot.
If a blood clot has formed in the sinus area of your wife's skull, it could be causing the build up of pressure that is damaging the optic nerve. This is a condition known as "cerebral venous sinus thrombosis," and it is one of the things that can cause papilledma.
More frequently, however, the clots that are caused by Revlimid occur in the legs, and, if not caught quickly enough, travel to the lungs, where they cause a "pulmonary embolism". Your wife's case would be the first that I've heard of where such a clot formed in the sinus area. However, that doesn't mean it isn't happening. It just isn't something you hear about often.
At this point, your wife's doctors really need to do two things.
First, they need to relieve the pressure that is causing the optic nerve damage. I believe diurectics (medications that shed fluid from the body), and even anti-inflammatory steroids such as prednisone (which also has an anti-myeloma effect), are used in such situations.
Second, they need to find the root cause of the problem. This will probably require imaging (MRI, PET/CT, etc.) and perhaps a sample of the spinal fluid (this is just a guess on my part; I'm not a doctor). Finding the source of the problem is something that the eye specialists who are seeing your wife should be trained to be able to do, however, so you'll really just have to let them leverage their expertise, most likely working together with your wife's myeloma specialists.
I wish I could offer you more advice, but, as I said, this is a rare complication, so the source of the problem is most likely very specific to your wife's situation.
I hope a solution to the problem is found soon. Please let us know what you learn and if you have any further questions.
Best wishes,
Jonah
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Jonah
Re: Revlimid and papilledema (optic disc swelling)
Hi Jonah,
Thank you for your thorough advice. We have talked exactly about the reasons you described in your post with the doctors today (dex and viscosity of blood). It is excluded since my wife is taking aspirin routinely and blood tests show good results.
Today we did an MRI of the brain and no compression or intracranial pressure confirmed thus it remains unclear what is happening. Even in MRI, the doctors could not find papilledema; however, the ophthalmologist claims it is there.
Today the eye doctor injected dex in her eye to help relieve papilledema (10 injections for 10 days). They will observe if this helps.
We have asked our German doctor in Berlin and he also has no experience in this issue. If no relieve, spinal fluid will be examined.
I am thankful for your kind responses. I will follow up with subsequent events.
Thank you for your thorough advice. We have talked exactly about the reasons you described in your post with the doctors today (dex and viscosity of blood). It is excluded since my wife is taking aspirin routinely and blood tests show good results.
Today we did an MRI of the brain and no compression or intracranial pressure confirmed thus it remains unclear what is happening. Even in MRI, the doctors could not find papilledema; however, the ophthalmologist claims it is there.
Today the eye doctor injected dex in her eye to help relieve papilledema (10 injections for 10 days). They will observe if this helps.
We have asked our German doctor in Berlin and he also has no experience in this issue. If no relieve, spinal fluid will be examined.
I am thankful for your kind responses. I will follow up with subsequent events.
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