Just an update everyone. Had ivig may 19, 20, 21 and 22nd. The treatments were long and I had terrible headaches all week but the ended shortly after on the 23rd. I have to say…I see a major difference. The swelling and redness are down considerably in my feet. I can actually wiggle my foot in my clogs! I have had ver little pain and this time of the year is usually the worst due to heat! The only symptom I have had in the last week is a tight feeling in my feet! I was hesitant to write anything yet but I had to share! I start my second round of ivig next week. We are working on my hydration to prevent headaches this time! Hoping this success continues and I may be able to sit on the beach in August this year! Hoping this info may help others!
Congratulations! I am so happy you have found something that is helping. Please continue to keep us updated of your continued treatment. I hope the headaches get better for you this next go around.
Take care,
Alina
Thanks Alina. Hoping this continues! Don’t want to get my hopes up!
Dkel- my doctor suggested it. She put me in a course of high dose prednisone for a month and weaned me off quickly. My symptoms subsided but only on high doses and returned when I started tapering. Since it would be harmful to be on such high doses of steroids on a long term basis, she suggested ivig. Said it would be hard to get insurance approval but after a few weeks it was approved!
Any updates on how this worked long term? It is something my wife and I are considering for her! Thanks!
jen said:
Dkel- my doctor suggested it. She put me in a course of high dose prednisone for a month and weaned me off quickly. My symptoms subsided but only on high doses and returned when I started tapering. Since it would be harmful to be on such high doses of steroids on a long term basis, she suggested ivig. Said it would be hard to get insurance approval but after a few weeks it was approved!
Matt. I will say overall an improvement. I have much less pain and few flares. My swelling in my feet has gone down considerably. I still have numbness in my feet and hands. My one issue is it is extremely time consuming. I’m Still working and I get an infusion 2 days every 2 weeks over 5 hours. For this time commitment I wish I had more sensation. I guess I am hoping for too much. My Neuro is happy with my improvement. I still get headaches from the ivig but they are pretty minor at this point. My feeling is it may be worth a shot if pain is the majority of your issue. I know you are “local” to me so if either of you would like to meet to talk I’d be happy to or phone works, too. Good luck. Jenn
Thank you. I know it has been a while, how has this been very long term...now that it's been almost 2 years? Thanks again!
jen said:
Matt. I will say overall an improvement. I have much less pain and few flares. My swelling in my feet has gone down considerably. I still have numbness in my feet and hands. My one issue is it is extremely time consuming. I'm Still working and I get an infusion 2 days every 2 weeks over 5 hours. For this time commitment I wish I had more sensation. I guess I am hoping for too much. My Neuro is happy with my improvement. I still get headaches from the ivig but they are pretty minor at this point. My feeling is it may be worth a shot if pain is the majority of your issue. I know you are "local" to me so if either of you would like to meet to talk I'd be happy to or phone works, too. Good luck. Jenn
Hi Matt. Well I had ivig for 1.5 years. At first I was getting the treatments at the infusion center at the hospital and then I switched to getting them at home. I did have less pain and swelling while I was on them but I decided to take a break for a few reasons.
#1. Headache. I had terrible headaches that would sometimes last 4-5 days post treatment (and I never had h/a prior)
#2. Time. I’m still working 30 hours a week and then spending almost 8-9 hours a week getting infusions just became too much.
#3. Access. I have terrible veins which became worse after all the IVs and had a PICC for 6 months. it was time to think about a port a cath and with the other factors I was not ready to go there.
So I am taking a break and we shall see. I will say that overall my swelling is still minimal compared to before treatment(6 months later). And my pain is even still better, too. (Not great but better). So it may be worth a try if your wife does not experience the side effects. The Headaches (for me) were becoming as bad as my other pain. (We tried hydration with infusions, slowing infusion rate, premeditation and post medication). But I have heard that others have no problem. Good luck.
Thanks for filling me in! I appreciate it!
jen said:
Hi Matt. Well I had ivig for 1.5 years. At first I was getting the treatments at the infusion center at the hospital and then I switched to getting them at home. I did have less pain and swelling while I was on them but I decided to take a break for a few reasons.
#1. Headache. I had terrible headaches that would sometimes last 4-5 days post treatment (and I never had h/a prior)
#2. Time. I'm still working 30 hours a week and then spending almost 8-9 hours a week getting infusions just became too much.
#3. Access. I have terrible veins which became worse after all the IVs and had a PICC for 6 months. it was time to think about a port a cath and with the other factors I was not ready to go there.
So I am taking a break and we shall see. I will say that overall my swelling is still minimal compared to before treatment(6 months later). And my pain is even still better, too. (Not great but better). So it may be worth a try if your wife does not experience the side effects. The Headaches (for me) were becoming as bad as my other pain. (We tried hydration with infusions, slowing infusion rate, premeditation and post medication). But I have heard that others have no problem. Good luck.