I was diagnosed with DM and ILD in January of 2021, I have been treated with prednisone, Azathioprine, and HCQ since my diagnosis, and so far my lung function has remained stable, but my labs on 1/24/2022 showed increase in inflammation, and elevated liver enzyme’s. Also my skin rash on my hands has flared. At my follow up visit with my Rheumatologist on 1/25/2022 the recommended I start IVIG treatments as soon as I can get an appointment. Prior to this my rheumatologist was talking about Rituximab infusions if there was any progression of my lung disease. Since my lung function remains stable, they are recommending IVIG Infusions. It’s a lot for me to process, so I was hoping someone who has gone through this could tell me about what they experienced. What I should expect, if there are things to help me prepare for the best outcome with these treatments and to help prevent some of the side effects. Thank You, Kathryn
I do not know the correlation of the acronyms to the diseases, but I am currently having Ivig treatment, this past Monday. The key is to have the infusion as slow as possible. (Each brand is different on the volume vs. Time.) Headaches are a major side effect, so be prepared and talk to your provider to have medication available ahead of time in case it is needed. There could be others just know what they are for your particular script.
I hope all goes smoothly and you heal quickly and feel better soon.
I do not know the correlation of the acronyms to the diseases, but I am currently having Ivig treatment, this past Monday. The key is to have the infusion as slow as possible. (Each brand is different on the volume vs. Time.) Headaches are a major side effect, so be prepared and talk to your provider to have medication available ahead of time in case it is needed. There could be others just know what they are for your particular script.
I hope all goes smoothly and you heal quickly and feel better soon.
I do not know the correlation of the acronyms to the diseases, but I am currently having Ivig treatment, this past Monday. The key is to have the infusion as slow as possible. (Each brand is different on the volume vs. Time.) Headaches are a major side effect, so be prepared and talk to your provider to have medication available ahead of time in case it is needed. There could be others just know what they are for your particular script.
I hope all goes smoothly and you heal quickly and feel better soon.
I have Dermatomyositis that is an autoimmune disease which can affect your skin, muscles, and lungs, unfortunately I have the trifecta, all three.
Thank You for the information, it’s helps a lot, because I am anxious about this treatment.
It’s not an easy journey! Praying for you, and wishing you the Best!
Health is Wealth!
Kathryn
I have Dermatomyositis that is an autoimmune disease which can affect your skin, muscles, and lungs, unfortunately I have the trifecta, all three.
Thank You for the information, it’s helps a lot, because I am anxious about this treatment.
It’s not an easy journey! Praying for you, and wishing you the Best!
Health is Wealth!
Kathryn
Kathryn thank you for your prayers!
Prayers for you.
I also have neuropathy and trigeminal neuralgia, so I tingle from my head to my toes.
I am serious about the speed it is given, make sure that it is given at the rate prescribed for that medication. I repeat because of experience and what seems like indifference. I hope this works for you. I have had improvement in some areas due to the Ivig.
Jill
Kathryn thank you for your prayers!
Prayers for you.
I also have neuropathy and trigeminal neuralgia, so I tingle from my head to my toes.
I am serious about the speed it is given, make sure that it is given at the rate prescribed for that medication. I repeat because of experience and what seems like indifference. I hope this works for you. I have had improvement in some areas due to the Ivig.
Jill
If you have any questions, please ask. I will virtually hold your hand through this, if needed! I have been where you are, my sister will occasionally complain about my taking it too literally to squeeze her hand if it hurts ( different procedure).
Kathryn thank you for your prayers!
Prayers for you.
I also have neuropathy and trigeminal neuralgia, so I tingle from my head to my toes.
I am serious about the speed it is given, make sure that it is given at the rate prescribed for that medication. I repeat because of experience and what seems like indifference. I hope this works for you. I have had improvement in some areas due to the Ivig.
Jill
Jill, sorry to hear everything that you are dealing with. it’s so unbelievable to me all of the different diseases, most of which I never even heard of, and all of the pain, and suffering people are living with everyday. I really took my good health for granted before my diagnosis, I had always been healthy, I just turned 73 in December. How quickly your life can change! It’s only been a year since my diagnosis, and I have done well with my treatments. My biggest concern was stopping the progression of the scarring of my lungs. Success, I had a pulmonary function test at the end of December, and my Lung Function is stable. Thank God! Last week I had labs, and follow up with my Rheumatologist, my Dermatomyositis has flared, rash, and muscle weakness, so they want me to start IVIG. I am grateful that I do not have pain. Thanks again for your advice. I have recently joined some private support groups on Facebook, one is IVIG, and how important the rate of infusion was mentioned a lot. I know probably TMI, Sorry. Hope things continue to get better for you, and that you are able to live life! Keep fighting, and never give up HOPE! Kathryn
I have had IVIG since consistently since August and it has reduced my symptoms by 40 to 60 percent depending on the time and dosage. The liver is constantly removing antibodies and IVIG antibodies are 50% removed within 21 days and as a result many of my symptoms would return in week four. I finally convinced my doctor to go to every three weeks to see if I had more of an effect if my symptoms didn't keep yo-yoing. It turns out it is standard practice after 3-6 months to try a reduced maintenance dose so when my doctor increased the frequency of infusions he reduced the dose by almost 60%. Unfortunately this allowed my neuropathy to advance and I had no positive response to the lower dose. I have convinced my doctor to do a trial at my original dose but on an every three week schedule. Unfortunately my PN has advanced so I walk with my legs frozen straight and after 2 doses three weeks apart the IVIG is no longer loosening up my legs. I have 2 more infusions and if I don't get better I will switch to a chemotherapy to suppress my immune system called Rituximab since my PN is autoimmune mediated. If you have a chance try IVIG. From my research IVIG has the greatest chance of reversing symptoms if it works for you and your kind of PN.
I would love to try it too, as I want to try ANYTHING that may help me! But sadly, my doctor refuses. While he can’t tell me what’s wrong with me, he is quick to tell me that IVIG won’t help me. I know we all have different tests done on us snd perhaps I’m not qualified for IVIG with my idiopathic neuropathy, but I look forward to following your journey.
In most cases of peripheral neuropathy the underlying cause has never been diagnosed, except in diabetes. Could it be due to some undiagnosed chronic infection or toxins? I think PN is only a symptom for some unknown underlying cause and docs simply call it idiopathic. I may be wrong and welcome comments.
I do not know the correlation of the acronyms to the diseases, but I am currently having Ivig treatment, this past Monday. The key is to have the infusion as slow as possible. (Each brand is different on the volume vs. Time.) Headaches are a major side effect, so be prepared and talk to your provider to have medication available ahead of time in case it is needed. There could be others just know what they are for your particular script.
I hope all goes smoothly and you heal quickly and feel better soon.
The night before my IGG infusion I hydrate with fluids and that seems to help with the headaches. Please check with your medical team before hydrating with large any of fluids. Good luck
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I do not know the correlation of the acronyms to the diseases, but I am currently having Ivig treatment, this past Monday. The key is to have the infusion as slow as possible. (Each brand is different on the volume vs. Time.) Headaches are a major side effect, so be prepared and talk to your provider to have medication available ahead of time in case it is needed. There could be others just know what they are for your particular script.
I hope all goes smoothly and you heal quickly and feel better soon.
I have done cold laser therapy and take Metanx for my neuropathy.
I have Dermatomyositis that is an autoimmune disease which can affect your skin, muscles, and lungs, unfortunately I have the trifecta, all three.
Thank You for the information, it’s helps a lot, because I am anxious about this treatment.
It’s not an easy journey! Praying for you, and wishing you the Best!
Health is Wealth!
Kathryn
Kathryn thank you for your prayers!
Prayers for you.
I also have neuropathy and trigeminal neuralgia, so I tingle from my head to my toes.
I am serious about the speed it is given, make sure that it is given at the rate prescribed for that medication. I repeat because of experience and what seems like indifference. I hope this works for you. I have had improvement in some areas due to the Ivig.
Jill
If you have any questions, please ask. I will virtually hold your hand through this, if needed! I have been where you are, my sister will occasionally complain about my taking it too literally to squeeze her hand if it hurts ( different procedure).
Jill, sorry to hear everything that you are dealing with. it’s so unbelievable to me all of the different diseases, most of which I never even heard of, and all of the pain, and suffering people are living with everyday. I really took my good health for granted before my diagnosis, I had always been healthy, I just turned 73 in December. How quickly your life can change! It’s only been a year since my diagnosis, and I have done well with my treatments. My biggest concern was stopping the progression of the scarring of my lungs. Success, I had a pulmonary function test at the end of December, and my Lung Function is stable. Thank God! Last week I had labs, and follow up with my Rheumatologist, my Dermatomyositis has flared, rash, and muscle weakness, so they want me to start IVIG. I am grateful that I do not have pain. Thanks again for your advice. I have recently joined some private support groups on Facebook, one is IVIG, and how important the rate of infusion was mentioned a lot. I know probably TMI, Sorry. Hope things continue to get better for you, and that you are able to live life! Keep fighting, and never give up HOPE! Kathryn
Have PN and woyld love to try IVIG. How often do you take one and what is the cost?
I would love to try it too, as I want to try ANYTHING that may help me! But sadly, my doctor refuses. While he can’t tell me what’s wrong with me, he is quick to tell me that IVIG won’t help me. I know we all have different tests done on us snd perhaps I’m not qualified for IVIG with my idiopathic neuropathy, but I look forward to following your journey.
In most cases of peripheral neuropathy the underlying cause has never been diagnosed, except in diabetes. Could it be due to some undiagnosed chronic infection or toxins? I think PN is only a symptom for some unknown underlying cause and docs simply call it idiopathic. I may be wrong and welcome comments.
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1 ReactionThe night before my IGG infusion I hydrate with fluids and that seems to help with the headaches. Please check with your medical team before hydrating with large any of fluids. Good luck