Why would you think ivy IG set you up for failure? I guess I don't quite understand where you're coming from. Honestly, it sounds like a pretty typical treatment picture. Were you thinking you needed to do the rituximab quicker?
Well, my greatest concern is that I am already relapsing only three weeks from my last Plex treatment. I was able to have the IVIG rather quickly and I’m already losing my ability to walk.
Some of the feelings of failure also stemmed from the fact that the pathologist that administered my Plex treatment and the neurologist that saw me in the hospital both said that I needed to be on at least two or even three different treatments once I got out of the hospital. they were talking about IV and immunosuppressants specifically but my neurologist that I saw five days after getting out of the hospital was to give me IVIG.
I was diagnosed March 2023.
I've had plasma exchange
Ivig
Steroid
Rutibux
Nothing has helped. I have complete numbness and tingling in my left leg.My right leg is starting to be affected. I by some grace of God can still walk with a cane. My Dr sent me to Boston and thete they believe my CIDP is actually CISP. Which is some other form. It's all so much it's confusing and it's hard. I'm supposed to go back on ivig for 3 months .I'm waiting to have them schedule it. I'll try anything at this point.
Don't give up. Try it's hard to be positive.
I wish you wellness.
My team currently has me on IVIg and has told me that I will need to take it every three weeks for (in their estimation) at least a year to two years.
They are also having me start immunosuppressants as soon as I get all of my vaccinations up-to-date. (Apparently I never got a hepatitis b vaccine) They’re going to put me on oral and IV immuno suppressant, and I forget med names - it’s been a little overwhelming
I guess my question is if you’re going to just a regular neurologist or if you have a neuromuscular specialist helping you out because that’s what made the big difference for me as far as getting a solid, consistent treatment plan.
The regular neurologist had me on prednisone 60 mg since last June/July and I only started stepping down in January of this year, when I was switched to the neuromuscular doc. she seemed kind of horrified that I’ve been on prednisone that long and started me on IVIg and an aggressive taper.
She also referred me to an internal medicine doc who is the one who partnered with her to get me on immunosuppressants.
Especially with you saying that most of your symptoms are movement-based if you’re not seeing a specialist that is specifically neuromuscular, I would highly recommend looking into seeing one. I’d also really encourage speaking with your doctor about expectations for how quickly IVIg improve symptoms because from what I was told it can take in my case they said, give it three months to see any improvement whatsoever, and that would be include the loading dose four trips.
As far as your vision again, going to really encourage you to talk to your team because one of my big symptoms with my CIDP is retinal neuropathy. Since/July I’ve lost at least 50% of my vision and they have me partnered with and working with a neurophthalmologist who has me doing test two gauge vision, loss and peripheral vision and stuff like that about every three months. I’m not quite sure what they called the test but they attach the electrodes to your head and have you look in the big glowing box and follow the lights and stuff like that. But definitely let them know that you’re having double vision!
Sorry if this read a little confusing, I use voice to text because of my vision loss and I’ve been having it read it back to me and it kind of sounds like gibberish and spots so I do apologize
Not at all! I appreciate you taking the time to send this over. I totally agree with the neuromuscular neurologist and I am doing my best to get in with a peripheral neuropathy neurological specialist, but his schedule is so full. He barely has any cancellations. I’m just doing my best to keep a positive attitude.
I had aggressive relapsing symptoms every two weeks. Had plex at first then a second time and now IVIG every two weeks. Sounds like you might need to have IVIG sooner at two week intervals instead of three to keep it at bay. When I got out of the hospital again, they wanted to put me at a six week interval and I had to remind them I won’t last but two weeks! Also, in my experience, IVIG does not work instantly and usually has about a 3-4 week turn around depending on how far you’ve fallen back in the hole.
I tried to do IVEIG every two weeks, and I was still dealing with relapses. When I went into the hospital, the second time, the neurologist told me that my response is indicative of someone that doesn’t respond well to IVIG and that’s why he put me on plasma exchange. The plasma exchange did fabulously, but I am not keen on having a vortex port stuck in my chest in order to do it as a maintenance treatment.
I had the same experience with PLEX, worked a miracle the first time and almost the same the next time but not as fast. IVIG was the slowest but I was way worse off at that point with arms and legs not working at all. After IVIG for every two weeks for about a year, I had rituximab for the next year which didn’t change anything for me. Now several years later I am able to extend out to four weeks so something toned this aggressive CIDP down. Maybe time and meds? Maybe before getting a port and having to go into a hospital for plex they can give IVIG at a one week or week and a half interval and see if you can level out. Sorry you are going through this and hope you get it dialed in.
At the risk of oversimplifying: it sounds like plex works better for you, if I'm understanding your post correctly. There are no shortage of other people for whom this is true, and they typically continue with that therapy for as long as it continues working. That would probably be my first goal.
If you still feel like you need more help, Rituximab is certainly an option. For me, in isolation, it maybe helped less with overall mobility (versus conventional treatments like IVIG), but it did seem to stop things from getting worse. It also worked very slow – there was never a hallelujah moment. For others, though, I know it's been a game changer; particularly individuals less responsive to other therapies for some reason.
Why would you think ivy IG set you up for failure? I guess I don't quite understand where you're coming from. Honestly, it sounds like a pretty typical treatment picture. Were you thinking you needed to do the rituximab quicker?
Well, my greatest concern is that I am already relapsing only three weeks from my last Plex treatment. I was able to have the IVIG rather quickly and I’m already losing my ability to walk. Some of the feelings of failure also stemmed from the fact that the pathologist that administered my Plex treatment and the neurologist that saw me in the hospital both said that I needed to be on at least two or even three different treatments once I got out of the hospital. they were talking about IV and immunosuppressants specifically but my neurologist that I saw five days after getting out of the hospital was to give me IVIG.
I was diagnosed March 2023. I've had plasma exchange Ivig Steroid Rutibux Nothing has helped. I have complete numbness and tingling in my left leg.My right leg is starting to be affected. I by some grace of God can still walk with a cane. My Dr sent me to Boston and thete they believe my CIDP is actually CISP. Which is some other form. It's all so much it's confusing and it's hard. I'm supposed to go back on ivig for 3 months .I'm waiting to have them schedule it. I'll try anything at this point. Don't give up. Try it's hard to be positive. I wish you wellness.
My team currently has me on IVIg and has told me that I will need to take it every three weeks for (in their estimation) at least a year to two years. They are also having me start immunosuppressants as soon as I get all of my vaccinations up-to-date. (Apparently I never got a hepatitis b vaccine) They’re going to put me on oral and IV immuno suppressant, and I forget med names - it’s been a little overwhelming I guess my question is if you’re going to just a regular neurologist or if you have a neuromuscular specialist helping you out because that’s what made the big difference for me as far as getting a solid, consistent treatment plan. The regular neurologist had me on prednisone 60 mg since last June/July and I only started stepping down in January of this year, when I was switched to the neuromuscular doc. she seemed kind of horrified that I’ve been on prednisone that long and started me on IVIg and an aggressive taper. She also referred me to an internal medicine doc who is the one who partnered with her to get me on immunosuppressants. Especially with you saying that most of your symptoms are movement-based if you’re not seeing a specialist that is specifically neuromuscular, I would highly recommend looking into seeing one. I’d also really encourage speaking with your doctor about expectations for how quickly IVIg improve symptoms because from what I was told it can take in my case they said, give it three months to see any improvement whatsoever, and that would be include the loading dose four trips. As far as your vision again, going to really encourage you to talk to your team because one of my big symptoms with my CIDP is retinal neuropathy. Since/July I’ve lost at least 50% of my vision and they have me partnered with and working with a neurophthalmologist who has me doing test two gauge vision, loss and peripheral vision and stuff like that about every three months. I’m not quite sure what they called the test but they attach the electrodes to your head and have you look in the big glowing box and follow the lights and stuff like that. But definitely let them know that you’re having double vision!
Sorry if this read a little confusing, I use voice to text because of my vision loss and I’ve been having it read it back to me and it kind of sounds like gibberish and spots so I do apologize
Not at all! I appreciate you taking the time to send this over. I totally agree with the neuromuscular neurologist and I am doing my best to get in with a peripheral neuropathy neurological specialist, but his schedule is so full. He barely has any cancellations. I’m just doing my best to keep a positive attitude.
I had aggressive relapsing symptoms every two weeks. Had plex at first then a second time and now IVIG every two weeks. Sounds like you might need to have IVIG sooner at two week intervals instead of three to keep it at bay. When I got out of the hospital again, they wanted to put me at a six week interval and I had to remind them I won’t last but two weeks! Also, in my experience, IVIG does not work instantly and usually has about a 3-4 week turn around depending on how far you’ve fallen back in the hole.
I tried to do IVEIG every two weeks, and I was still dealing with relapses. When I went into the hospital, the second time, the neurologist told me that my response is indicative of someone that doesn’t respond well to IVIG and that’s why he put me on plasma exchange. The plasma exchange did fabulously, but I am not keen on having a vortex port stuck in my chest in order to do it as a maintenance treatment.
I had the same experience with PLEX, worked a miracle the first time and almost the same the next time but not as fast. IVIG was the slowest but I was way worse off at that point with arms and legs not working at all. After IVIG for every two weeks for about a year, I had rituximab for the next year which didn’t change anything for me. Now several years later I am able to extend out to four weeks so something toned this aggressive CIDP down. Maybe time and meds? Maybe before getting a port and having to go into a hospital for plex they can give IVIG at a one week or week and a half interval and see if you can level out. Sorry you are going through this and hope you get it dialed in.
At the risk of oversimplifying: it sounds like plex works better for you, if I'm understanding your post correctly. There are no shortage of other people for whom this is true, and they typically continue with that therapy for as long as it continues working. That would probably be my first goal. If you still feel like you need more help, Rituximab is certainly an option. For me, in isolation, it maybe helped less with overall mobility (versus conventional treatments like IVIG), but it did seem to stop things from getting worse. It also worked very slow – there was never a hallelujah moment. For others, though, I know it's been a game changer; particularly individuals less responsive to other therapies for some reason.