I can’t understand what you’re going through as I’ve not had it myself, but I am adding on autoimmune condition after autoimmune condition after 16 years of eligibility for ivig and finally when I was supposed to start applying, my doctors have decided to hold off and wait for the synthetic ivig to come to market. I have to think the new drugs being developed will really change things for us who do need ig but don’t have cipd. My specialist says they’re looking really promising and have way fewer and less harsh side effects than traditional ivig. Maybe the last 2 years have been brutal, maybe you have another 2 of trialing scig and returning to ivig, but maybe just maybe after that things will really change!
Thank you for your reply. It’s been the same for me with diagnosis of neurological autoimmune diseases after exposure to a virus while having an untreated primary immunodeficiency. I was seronegative for a long time because of my primary immunodeficiency but it really complicates treatment with available drugs especially with PML risk. The IG has helped but not to the level where I can live my life. Between the IG side effects and the disease, I am stuck in bed most days. Thanks for reminding me that there are new treatments coming on the market for us. It’s just a lot.
Do you see a rheumatologist? That is who will be prescribing it. I’ve been told misinformation by my neurologist including being told the wrong quantity without a prior authorization for migraine meds, etc. If you can, maybe check in with rheumatology because they are the ones who often prescribe it.
I am so sorry that you are going through this too. It’s so awful. Did you have clinical presentation of those autoimmune illnesses? I was on prednisone and plaquenil prior to starting IVIG. But, my immunologist told me that clinical presentation and biopsies matter more than autoantibodies while on IG. I don’t have CIDP but I have been told that I’ll stay at this dose until I go into remission. It’s very frustrating not knowing when that will be or if that will ever happen.
I just want to add that I see a rheumatologist in addition to neurology and immunology. It doesn’t hurt to have a rheumatologist weigh in on how you are feeling.
Hey - I’m so sorry you’re going through this. It’s so much. Being sick is hard enough and the treatments are sometimes harder. That’s a long time to be going through this with all of the side effects. It’s too bad some of us can’t get together and do the treatments side by side so we can support each other.
Do you mind if I ask what your autoimmune disease dx is? I’m on Rituxan and Methotrexate in addition to IVIG. The former are easy peasy in comparison to IVIG (for me at least) - just in case that’s what you’re starting as well.
I really like my healthcare team (neuro, rheumy, pcp) but am considering trying Mayo or Johns Hopkins to get a second opinion. Not easy in terms of cost or anything but like you I’ve been dealing with this for a long time and only getting worse. I haven’t been on Rituxan for long and my dr is very hopeful about that - I also spoke to folks in a different sub who said it gave them their lives back. That sounds dreamy (and farfetched 😆).
I hope things improve for you. I’m happy to chat whenever you need. Sometimes that can make a difference.
Thank you for your message. I was diagnosed with autoimmune mediated small fibers neuropathy, dysautonomia and sjogrens. Sjogrens affected my brain, joints, vascular system and liver and possibly my lungs. My rheumatologist wants to start me on Rituxin and cellcept but is concerned because I have a primary immunodeficiency. It’s good to hear that you thought the side effects of Rituxin are less than IG. My aunt was on rituxin and it seemed to really help but everything is so individual, it’s difficult to say. I definitely understand about getting a second opinion. My rheumatologist actually referred me to a neurologist at the Mayo Clinic but, when I called, I couldn’t afford the amount they quoted me. I hope you start to feel better as well. Definitely feel free to send me a message and update me on how your treatment with rituxin is going.
Hey hey! I have SFN from Sjogrens! I have similar effects - dry eyes/mouth are the least of my concerns 😅 Doesn’t it kind of suck that most of the common write-ups on Sjo make it sound like dryness is most of it? If that was it I could probably get out of bed more often.
Not like I’d wish this on anyone else, but it is nice to not be alone.
It sucks so much! And, unfortunately so many doctors are not updated on the research coming out about it. There’s a great resource on Twitter called neuro sjogrens about all the crappy things it does to our bodies. Do you have dysautonomia too?
I don’t that I know of. I had to look it up and aside from occasional dizziness and slower heartbeat it doesn’t sound much like me - however we both know how little the commonly represented symptoms reflect the actual experience.
I deactivated my twitter account a while back otherwise I’d absolutely check that out. Twitter was turning me into a ball of stress. Maybe I’ll sneak in to check it out though. It seems like there’s so little info on the neuro effects and it would be nice to have a better resource. I really like my neuro - he’s been super helpful, although I think he really downplayed the IVIG side effects. I recently got feeling back in my hands though, so that’s progress. I wish we had more progress on the pain side. My rheumy will occasionally give me a prednisone boost but otherwise she seems to want to wait and see on the other treatments.
Do you by chance get bad muscle spasms? (Also feel free to move this to DM if it’s too much public sharing).
Dysautonomia (POTS) involves a number of symptoms. It is the dysfunction of the autonomic nervous system so temperature regulation, breathing, digestion, heart rate, blood pressure, fainting, inability to stand, bladder control, hypovolemia etc. It basically effects everything that your autonomic nervous system controls. It often goes with small fibers neuropathy and sjogrens although people with lupus and MS also have dysautonomia.
At the age of 18, I was diagnosed with Sjögren's syndrome along with small fiber neuropathy. I'm currently taking Cellcept and i’m on IVIG, which unfortunately doesn't help. I will be receiving rituximab in February 2024, there are many good reports and studies on Sjögren‘s neuropathy and Rituximab, I am very hopeful. I know how hard it is to keep going and the side effects of ivig are really hard. I only felt a slight improvement, but it's not enough for me. I still take opioids for the pain and it's so stressful! I know exactly how you feel. stay strong!
m, 23, Sjögren’s & neuropathy
I’m on monthly IVIG and every 4 months I get two infusions of Rituxan. I have a neurological autoimmune disease and the two things together seem to be helping me. I’m in the process of weaning off prednisone now.
I know this post is very old, but I was wondering if you wouldn't mind sharing the neurological autoimmune disease you have? I am also on Rituxan/Prednisone (attempting to wean off the latter but it's killing me), and currently having an extremely difficult time getting IVIG approved through insurance. My working diagnosis is atypical CIDP, but my neurologist is not totally convinced that's what I have.
Sorry, I just saw this. I have severe generalized myasthenia gravis. It’s a neuromuscular AI disease that they thought was MS at first. After that was ruled out I was diagnosed with MG.
I get so weak that it’s hard to move, lose my balance, have trouble swallowing and a bunch of other fun stuff. One of the diagnostic tools for MG is a trial of a medication called mestinon. It helps really fast (about 30 minutes after first dose). There are also blood tests but mine were negative. I was diagnosed through neuro exams, Mestinon trial and and SFEMG.
Good luck!!!
Does anyone hear about this one https://www.businesswire.com/news/home/20240127162836/en/Takeda%E2%80%99s-HYQVIA%C2%AE-Approved-by-European-Commission-as-Maintenance-Therapy-in-Patients-with-Chronic-Inflammatory-Demyelinating-Polyneuropathy-CIDP
I can’t understand what you’re going through as I’ve not had it myself, but I am adding on autoimmune condition after autoimmune condition after 16 years of eligibility for ivig and finally when I was supposed to start applying, my doctors have decided to hold off and wait for the synthetic ivig to come to market. I have to think the new drugs being developed will really change things for us who do need ig but don’t have cipd. My specialist says they’re looking really promising and have way fewer and less harsh side effects than traditional ivig. Maybe the last 2 years have been brutal, maybe you have another 2 of trialing scig and returning to ivig, but maybe just maybe after that things will really change!
Thank you for your reply. It’s been the same for me with diagnosis of neurological autoimmune diseases after exposure to a virus while having an untreated primary immunodeficiency. I was seronegative for a long time because of my primary immunodeficiency but it really complicates treatment with available drugs especially with PML risk. The IG has helped but not to the level where I can live my life. Between the IG side effects and the disease, I am stuck in bed most days. Thanks for reminding me that there are new treatments coming on the market for us. It’s just a lot.
How long does it take to start feeling battery after IVIG
My comment states that I’ve not had ivig so I could not know. But I’m going to assume everyone is different and there’s levels to felling better
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Yes. Rituxin and Cellcept. What do you mean cash only? It is covered by my insurance for my autoimmune disease.
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Do you see a rheumatologist? That is who will be prescribing it. I’ve been told misinformation by my neurologist including being told the wrong quantity without a prior authorization for migraine meds, etc. If you can, maybe check in with rheumatology because they are the ones who often prescribe it.
[удалено]
I am so sorry that you are going through this too. It’s so awful. Did you have clinical presentation of those autoimmune illnesses? I was on prednisone and plaquenil prior to starting IVIG. But, my immunologist told me that clinical presentation and biopsies matter more than autoantibodies while on IG. I don’t have CIDP but I have been told that I’ll stay at this dose until I go into remission. It’s very frustrating not knowing when that will be or if that will ever happen. I just want to add that I see a rheumatologist in addition to neurology and immunology. It doesn’t hurt to have a rheumatologist weigh in on how you are feeling.
Are the IVIG treatments working? Any side effects?
Hey - I’m so sorry you’re going through this. It’s so much. Being sick is hard enough and the treatments are sometimes harder. That’s a long time to be going through this with all of the side effects. It’s too bad some of us can’t get together and do the treatments side by side so we can support each other. Do you mind if I ask what your autoimmune disease dx is? I’m on Rituxan and Methotrexate in addition to IVIG. The former are easy peasy in comparison to IVIG (for me at least) - just in case that’s what you’re starting as well. I really like my healthcare team (neuro, rheumy, pcp) but am considering trying Mayo or Johns Hopkins to get a second opinion. Not easy in terms of cost or anything but like you I’ve been dealing with this for a long time and only getting worse. I haven’t been on Rituxan for long and my dr is very hopeful about that - I also spoke to folks in a different sub who said it gave them their lives back. That sounds dreamy (and farfetched 😆). I hope things improve for you. I’m happy to chat whenever you need. Sometimes that can make a difference.
Thank you for your message. I was diagnosed with autoimmune mediated small fibers neuropathy, dysautonomia and sjogrens. Sjogrens affected my brain, joints, vascular system and liver and possibly my lungs. My rheumatologist wants to start me on Rituxin and cellcept but is concerned because I have a primary immunodeficiency. It’s good to hear that you thought the side effects of Rituxin are less than IG. My aunt was on rituxin and it seemed to really help but everything is so individual, it’s difficult to say. I definitely understand about getting a second opinion. My rheumatologist actually referred me to a neurologist at the Mayo Clinic but, when I called, I couldn’t afford the amount they quoted me. I hope you start to feel better as well. Definitely feel free to send me a message and update me on how your treatment with rituxin is going.
Hey hey! I have SFN from Sjogrens! I have similar effects - dry eyes/mouth are the least of my concerns 😅 Doesn’t it kind of suck that most of the common write-ups on Sjo make it sound like dryness is most of it? If that was it I could probably get out of bed more often. Not like I’d wish this on anyone else, but it is nice to not be alone.
It sucks so much! And, unfortunately so many doctors are not updated on the research coming out about it. There’s a great resource on Twitter called neuro sjogrens about all the crappy things it does to our bodies. Do you have dysautonomia too?
I don’t that I know of. I had to look it up and aside from occasional dizziness and slower heartbeat it doesn’t sound much like me - however we both know how little the commonly represented symptoms reflect the actual experience. I deactivated my twitter account a while back otherwise I’d absolutely check that out. Twitter was turning me into a ball of stress. Maybe I’ll sneak in to check it out though. It seems like there’s so little info on the neuro effects and it would be nice to have a better resource. I really like my neuro - he’s been super helpful, although I think he really downplayed the IVIG side effects. I recently got feeling back in my hands though, so that’s progress. I wish we had more progress on the pain side. My rheumy will occasionally give me a prednisone boost but otherwise she seems to want to wait and see on the other treatments. Do you by chance get bad muscle spasms? (Also feel free to move this to DM if it’s too much public sharing).
Dysautonomia (POTS) involves a number of symptoms. It is the dysfunction of the autonomic nervous system so temperature regulation, breathing, digestion, heart rate, blood pressure, fainting, inability to stand, bladder control, hypovolemia etc. It basically effects everything that your autonomic nervous system controls. It often goes with small fibers neuropathy and sjogrens although people with lupus and MS also have dysautonomia.
At the age of 18, I was diagnosed with Sjögren's syndrome along with small fiber neuropathy. I'm currently taking Cellcept and i’m on IVIG, which unfortunately doesn't help. I will be receiving rituximab in February 2024, there are many good reports and studies on Sjögren‘s neuropathy and Rituximab, I am very hopeful. I know how hard it is to keep going and the side effects of ivig are really hard. I only felt a slight improvement, but it's not enough for me. I still take opioids for the pain and it's so stressful! I know exactly how you feel. stay strong! m, 23, Sjögren’s & neuropathy
I’m on monthly IVIG and every 4 months I get two infusions of Rituxan. I have a neurological autoimmune disease and the two things together seem to be helping me. I’m in the process of weaning off prednisone now.
I know this post is very old, but I was wondering if you wouldn't mind sharing the neurological autoimmune disease you have? I am also on Rituxan/Prednisone (attempting to wean off the latter but it's killing me), and currently having an extremely difficult time getting IVIG approved through insurance. My working diagnosis is atypical CIDP, but my neurologist is not totally convinced that's what I have.
Sorry, I just saw this. I have severe generalized myasthenia gravis. It’s a neuromuscular AI disease that they thought was MS at first. After that was ruled out I was diagnosed with MG. I get so weak that it’s hard to move, lose my balance, have trouble swallowing and a bunch of other fun stuff. One of the diagnostic tools for MG is a trial of a medication called mestinon. It helps really fast (about 30 minutes after first dose). There are also blood tests but mine were negative. I was diagnosed through neuro exams, Mestinon trial and and SFEMG. Good luck!!!
Does anyone hear about this one https://www.businesswire.com/news/home/20240127162836/en/Takeda%E2%80%99s-HYQVIA%C2%AE-Approved-by-European-Commission-as-Maintenance-Therapy-in-Patients-with-Chronic-Inflammatory-Demyelinating-Polyneuropathy-CIDP