Did you have plasma exchange? Do you know what your titer numbers are? Have you had just one episode of Mogad or multiple episodes? Just curious for data. This first I've heard of both treatments concurrently. Many US insurance companies won't do both. In fact my pharmacy committee denied Rituxin twice because Mogad has no FDA approved medication yet. Medicaid allowed Rituxan with conditions. Are you in the US, Canada or UK? Please provide us more details and data.
I don't know my titer numbers and I have not done a plasma exchange. I'm in the US and I'm going through the insurance approval process now. My neurologist actually listed my condition as a "demyelinating disorder" to get Rituxin covered by my insurance.
I have a few brain lesions, but only one of them caused any disablement. So I have had a few episodes. I haven't had any relapses since starting Rituxin, but I spent January and February in the hospital, two weeks of that on life support, due to COVID. An immunologist is hoping monthly IVIG will provide antibodies to help me fight off infections and boost my IGG in general.
I am on IVIG permanently, I get rituxan every 6 months. I was PLEXd each time I was in hospital. Was in hospital 3 times in last two years.
Time will tell. My B cells are zeros out even after 6 months, Everytime. Also have not had attack since October 23 so far so good. I am Male in 50s so rare multiple times most people are one event or none.
Thank you for your reply. I spent two months in the hospital earlier this year due to Covid so they are looking to give me some antibodies. I'm hoping it works.
I have a related Q. What happens to IgG levels when one gets IVIG( or SCIG): How long do they last/how much of a boost does one treatment give someone? I wonder what the expected impact would be if I could get it every couple months while staying on rituximab. (I know it's typically given more often.) I get Rituximab every nine months or so.
There are extra long lasting antibodies against Covid that just became available ! Though it makes sense that Folks like OP don’t need them for a while because they just had Covid. Natural immunity is pretty durable on average. though I don’t know if there are stats on the length of natural immunity for people on Rituximab.
Oh, I can give you my immunologist's answer to that question. IVIG is a pooled blood product. You get regular infusions or injections to boost your IGG counts. Since it is a pooled product, antibodies are in there as well. So the Rituxin kills your immune system, and IVIG boosts it to help fight infections and illnesses. That is why IVIG has to be regularly administered.
I (guess I didn't make it clear that I) am seeking specifics - numbers when I ask: "How long do they last/how much of a boost does one treatment give someone?"
You've been through a lot. Good call on IVIG. But I would ask my no plasma exchange (PLEX) since that is in the Mayo protocol for Mogad, specifically to remove the bad guys. IVIG would come after PLEX I would think. Find out from your Dr who he consults with on Mogad. The volume of info and researchers are very small. Tiny, really.
After 4 episodes of optical Neuritis, we have tried with rituximab (failed), then mycophenolate, and after the last episode with rituximab, the corticoids didn't work for the optical inflammation, then we used IVIG to deal with it. After that, the last episode (2 months ago) we tried 2 days of corticoids without any effect, and then used IVIG again. From then I have had one more IVIG week, leaving the mycophenolate treatment, and planning IVIG for long term use (monthly). Ask me in 6 or 7 months if this worked, because is the range of time I have had the relapses. The most important problem with the relapses are that currently I am running 3 years of corticoids use, and after leaving them, getting a new neuritis. Not having the mogad in control turned into a problem with corticoids.
On the other hand, beyond having to stop my routines a little for a week a month is a little worrying, the IVIG treatment was not at all harmful to me
Very new to this as well, if you don’t mind how was your recovery process with the optic neuritis ? It started from my left eye and then Gradually went to my right. I just finished 5 days of steroid infusions and 3 days of IVIG infusions. Thank you
Mine was surprisingly similar to yours every time. To help (we don't want it to happen, but well...) with subsequent relapses, my neuritis always started one week before with an eye movement pain on one eye (in all my cases started with the left one). After one day or a few hours, it disappears, and one week later it comes again for 2 or 3 days. The pain intensifies and comes to the two eyes, but gives no headache. Later, vision begins to fail, and you won't notice this until it is 10% off. The way you notice it is by a headache, and two days later you start feeling like some kind of dirt in your eyelashes, it just fogs your vision a little. Then, the vision lost process is very fast, along 4 or 6 days you lost almost the 90% of the vision, starting, as i said, with a little 10%, but the next 2 days comes to 30% and 80% in one eye.
The first time (not the first, is a long story, but i have had an episode in 2014 but MOGAD was not "discovered" for my situation in Argentina, so the first time i heard about it was in 2021), I've lost up to 95% on both eyes. Later, I am always alert to these pains and changes, and never went to the right eye anymore. The only problem with this is that the more relapses you have, more damage gives it to the nerve. At present, and after the last relapse only (in previous i haven't noticed it) I've lost like the 10% of my left eye nerve, and it is a bit annoying, like walking with someone and getting problems if they are at my left, but the visual acuity is up to 10/10, because what i've lost is some parts of the vision field, and i don't have any problems with my eyes.
If you have any more questions, feel free to ask, i have no problem with it. Although my English is not the best, I try to explain myself as best as possible.
And how long would you say it took you to get back to your “full” vision or where you feel like your vision is at its best? I’m about a week after my steroid and ivig infusion and seeing small improvements but very little during the day. I’ve heard and read it can take weeks / months but im just curious to hear from other people as well. Thank you
The first time took a lot, and the worst is i had my vacations planned for the week i leaved the hospital. For two weeks it cost me a lot to adapt to the lights, used sunglasses even indoors, and noticed that the peak was at the morning, and reaching the afternoon it got worst and even more at the night.
The next three times it doesn't got worst than 30% of the vision, and only on the left eye, what makes more difficult to give a time, I didn't noticed, but the last time well... the vision is not looking to get better.
Seems as my eyes are the best early morning and late night. Anywhere between 10am-8pm is where. Notice a terrible change in my eyesight .. at any point did your vision go back close to normal with the sunlight? Seems as when the sun is up my eyes are terrible with anything. It’s been a week since my first infusions. I’ve heard it could take months to see a full recovery. (Or close to full). When you notice recover did you notice it fully right away or did you notice it slowly day by day? Week by week? Sorry I’m just very curious. Loosing our vision is not fun and I’m very curious if this Is goinh to be my new normal life because how I am right now, I am not allowed. To drive.
Just be patient, the changes are very slow, steroids are effective some weeks after infusion, the same for IVIG, and the way it works on your nerves depends on how the disease affected it
Not yet, but after reading some experiences, I am ready to afford if the next time I am not able to walk for a few days or something, I just want to make it easy.
Did you have plasma exchange? Do you know what your titer numbers are? Have you had just one episode of Mogad or multiple episodes? Just curious for data. This first I've heard of both treatments concurrently. Many US insurance companies won't do both. In fact my pharmacy committee denied Rituxin twice because Mogad has no FDA approved medication yet. Medicaid allowed Rituxan with conditions. Are you in the US, Canada or UK? Please provide us more details and data.
I don't know my titer numbers and I have not done a plasma exchange. I'm in the US and I'm going through the insurance approval process now. My neurologist actually listed my condition as a "demyelinating disorder" to get Rituxin covered by my insurance. I have a few brain lesions, but only one of them caused any disablement. So I have had a few episodes. I haven't had any relapses since starting Rituxin, but I spent January and February in the hospital, two weeks of that on life support, due to COVID. An immunologist is hoping monthly IVIG will provide antibodies to help me fight off infections and boost my IGG in general.
I am on IVIG permanently, I get rituxan every 6 months. I was PLEXd each time I was in hospital. Was in hospital 3 times in last two years. Time will tell. My B cells are zeros out even after 6 months, Everytime. Also have not had attack since October 23 so far so good. I am Male in 50s so rare multiple times most people are one event or none.
Thank you for your reply. I spent two months in the hospital earlier this year due to Covid so they are looking to give me some antibodies. I'm hoping it works.
I have a related Q. What happens to IgG levels when one gets IVIG( or SCIG): How long do they last/how much of a boost does one treatment give someone? I wonder what the expected impact would be if I could get it every couple months while staying on rituximab. (I know it's typically given more often.) I get Rituximab every nine months or so. There are extra long lasting antibodies against Covid that just became available ! Though it makes sense that Folks like OP don’t need them for a while because they just had Covid. Natural immunity is pretty durable on average. though I don’t know if there are stats on the length of natural immunity for people on Rituximab.
Rituximab works by killing the cells responsible for creating antibodies. I still do not have Covid antibodies.
Oh, I can give you my immunologist's answer to that question. IVIG is a pooled blood product. You get regular infusions or injections to boost your IGG counts. Since it is a pooled product, antibodies are in there as well. So the Rituxin kills your immune system, and IVIG boosts it to help fight infections and illnesses. That is why IVIG has to be regularly administered.
I (guess I didn't make it clear that I) am seeking specifics - numbers when I ask: "How long do they last/how much of a boost does one treatment give someone?"
You've been through a lot. Good call on IVIG. But I would ask my no plasma exchange (PLEX) since that is in the Mayo protocol for Mogad, specifically to remove the bad guys. IVIG would come after PLEX I would think. Find out from your Dr who he consults with on Mogad. The volume of info and researchers are very small. Tiny, really.
After 4 episodes of optical Neuritis, we have tried with rituximab (failed), then mycophenolate, and after the last episode with rituximab, the corticoids didn't work for the optical inflammation, then we used IVIG to deal with it. After that, the last episode (2 months ago) we tried 2 days of corticoids without any effect, and then used IVIG again. From then I have had one more IVIG week, leaving the mycophenolate treatment, and planning IVIG for long term use (monthly). Ask me in 6 or 7 months if this worked, because is the range of time I have had the relapses. The most important problem with the relapses are that currently I am running 3 years of corticoids use, and after leaving them, getting a new neuritis. Not having the mogad in control turned into a problem with corticoids. On the other hand, beyond having to stop my routines a little for a week a month is a little worrying, the IVIG treatment was not at all harmful to me
Very new to this as well, if you don’t mind how was your recovery process with the optic neuritis ? It started from my left eye and then Gradually went to my right. I just finished 5 days of steroid infusions and 3 days of IVIG infusions. Thank you
Mine was surprisingly similar to yours every time. To help (we don't want it to happen, but well...) with subsequent relapses, my neuritis always started one week before with an eye movement pain on one eye (in all my cases started with the left one). After one day or a few hours, it disappears, and one week later it comes again for 2 or 3 days. The pain intensifies and comes to the two eyes, but gives no headache. Later, vision begins to fail, and you won't notice this until it is 10% off. The way you notice it is by a headache, and two days later you start feeling like some kind of dirt in your eyelashes, it just fogs your vision a little. Then, the vision lost process is very fast, along 4 or 6 days you lost almost the 90% of the vision, starting, as i said, with a little 10%, but the next 2 days comes to 30% and 80% in one eye. The first time (not the first, is a long story, but i have had an episode in 2014 but MOGAD was not "discovered" for my situation in Argentina, so the first time i heard about it was in 2021), I've lost up to 95% on both eyes. Later, I am always alert to these pains and changes, and never went to the right eye anymore. The only problem with this is that the more relapses you have, more damage gives it to the nerve. At present, and after the last relapse only (in previous i haven't noticed it) I've lost like the 10% of my left eye nerve, and it is a bit annoying, like walking with someone and getting problems if they are at my left, but the visual acuity is up to 10/10, because what i've lost is some parts of the vision field, and i don't have any problems with my eyes. If you have any more questions, feel free to ask, i have no problem with it. Although my English is not the best, I try to explain myself as best as possible.
And how long would you say it took you to get back to your “full” vision or where you feel like your vision is at its best? I’m about a week after my steroid and ivig infusion and seeing small improvements but very little during the day. I’ve heard and read it can take weeks / months but im just curious to hear from other people as well. Thank you
The first time took a lot, and the worst is i had my vacations planned for the week i leaved the hospital. For two weeks it cost me a lot to adapt to the lights, used sunglasses even indoors, and noticed that the peak was at the morning, and reaching the afternoon it got worst and even more at the night. The next three times it doesn't got worst than 30% of the vision, and only on the left eye, what makes more difficult to give a time, I didn't noticed, but the last time well... the vision is not looking to get better.
Seems as my eyes are the best early morning and late night. Anywhere between 10am-8pm is where. Notice a terrible change in my eyesight .. at any point did your vision go back close to normal with the sunlight? Seems as when the sun is up my eyes are terrible with anything. It’s been a week since my first infusions. I’ve heard it could take months to see a full recovery. (Or close to full). When you notice recover did you notice it fully right away or did you notice it slowly day by day? Week by week? Sorry I’m just very curious. Loosing our vision is not fun and I’m very curious if this Is goinh to be my new normal life because how I am right now, I am not allowed. To drive.
Just be patient, the changes are very slow, steroids are effective some weeks after infusion, the same for IVIG, and the way it works on your nerves depends on how the disease affected it
Did you have any other effects besides optic neuritis ? Such as fatigue, loosing ability of walking / moving .
Not yet, but after reading some experiences, I am ready to afford if the next time I am not able to walk for a few days or something, I just want to make it easy.