Start my first round of IVIG Monday. Hope things go well and it works. I am so ready to get as much of my life back as is possilbe. Tired of the wheelchair and the pain.
Hi Jana,
I hope and pray the IVIg infusions help you. Don't expect the positive results right away. Sometimes it takes a week or so to notice the difference. I know the first round helped me, but lasted only a month or so..and I had infusions for 5 days. This time it was two infusions- one yesterday and one the day before. It may be my mind playing tricks on me with the symptoms, but I do have less nerve pain. Will see about gaining more lower body strength. I really expect it will help.
Good luck, Jana! You will be in my prayers.
Linda
I would echo the comments about everyone's symptoms and reaction to the IVIG being different. 5+ years ago I received IVIG treatments every 5 weeks with treatments spanning 5 days. As the disease has progressed, the time between treatments has been reduced to 3 weeks. Shorter cycles for treatment do not seem to be used, except in special circumstances. Since I tolerate the infusions very well, they are done in my home over a period of 2 days. Not only is this minimally intrusive on my (and my wife's) lifestyle it is somewhat cheaper for my insurance company so they of course do not object. As for symptoms I have minimal numbness but severe leg weakness and some right arm weakness. When my doc recently extended my cycle between infusions from 3 to 5 weeks, I could not walk without a walker, could not drive, could barely drag myself up stairs, etc. at the end of the 5 weeks, but with my normal 3 week cycle I can do all of these thinks perfectly well. My life would be very different without the treatments!
I am on Gammulux every 21 days also. When I tried to stretch it out to 28 days I had symptoms like weakness in the legs and burning top of hands, etc. So now instead of trying to push the time inbetween my neurologist is trying to reduce my dose from 40 grams of 10% Gammunux to 35 grams of 10% gammunux to see if I can go with a lower dose. I will be trying the lower dose on my next IVIG infusion. Also we are increasing my maximum rate from 120 to 150 to see if I can tolorate the drug a little bit faster so that i can shorten my infusions. They currently waste 5 hours of my precious Sunday mornings every three weeks which I hate. I tried to get my insurance company to cover in-home infusions but they will only cover 80% if I go with inhome so I am stuck with going to an infusion center. I don't see why they would not cover 100% if it is cheaper for inhome over infusion centers?
Good question on the home treatment chirpybirdy. Maybe the infusion centers in some cases are cheaper.I was infused for a couple of years at Johns Hopkins Hospital and that was more expensive than my current home infusion. I do think it is a good idea to use a hospital setting in the beginning while the infusion process it getting stabilized and side effects can be carefully monitored. For my insurance I had to change options from low to high to get the full reimbursement for home treatment. (I use Gammagard liquid). This change proved cheaper overall in the end anyway. Going to a lower dose is a good strategy, if you can get away with it. Apparently many can but it did not work for me. I now get 2g/kg of body weight, the maximum any doctor seems willing to prescribe because of potential side effects. When my dose was reduced by only 25% (to 1.5 g/kg), the IVIG was far less effective. Good luck with the higher rate. I realize it does not work for everyone but it did for me.
chirpybirdy said:
I am on Gammulux every 21 days also. When I tried to stretch it out to 28 days I had symptoms like weakness in the legs and burning top of hands, etc. So now instead of trying to push the time inbetween my neurologist is trying to reduce my dose from 40 grams of 10% Gammunux to 35 grams of 10% gammunux to see if I can go with a lower dose. I will be trying the lower dose on my next IVIG infusion. Also we are increasing my maximum rate from 120 to 150 to see if I can tolorate the drug a little bit faster so that i can shorten my infusions. They currently waste 5 hours of my precious Sunday mornings every three weeks which I hate. I tried to get my insurance company to cover in-home infusions but they will only cover 80% if I go with inhome so I am stuck with going to an infusion center. I don't see why they would not cover 100% if it is cheaper for inhome over infusion centers?
Got my first round of IVIG today. We keep all informed of how my progress goes. I to am interested in others experiences.
Chirpybirdy- Could you tell me more about Gammulux? There is nothing about it when I search for info. Much appreciated. Linda
roserider said:
Good question on the home treatment chirpybirdy. Maybe the infusion centers in some cases are cheaper.I was infused for a couple of years at Johns Hopkins Hospital and that was more expensive than my current home infusion. I do think it is a good idea to use a hospital setting in the beginning while the infusion process it getting stabilized and side effects can be carefully monitored. For my insurance I had to change options from low to high to get the full reimbursement for home treatment. (I use Gammagard liquid). This change proved cheaper overall in the end anyway. Going to a lower dose is a good strategy, if you can get away with it. Apparently many can but it did not work for me. I now get 2g/kg of body weight, the maximum any doctor seems willing to prescribe because of potential side effects. When my dose was reduced by only 25% (to 1.5 g/kg), the IVIG was far less effective. Good luck with the higher rate. I realize it does not work for everyone but it did for me.
chirpybirdy said:I am on Gammulux every 21 days also. When I tried to stretch it out to 28 days I had symptoms like weakness in the legs and burning top of hands, etc. So now instead of trying to push the time inbetween my neurologist is trying to reduce my dose from 40 grams of 10% Gammunux to 35 grams of 10% gammunux to see if I can go with a lower dose. I will be trying the lower dose on my next IVIG infusion. Also we are increasing my maximum rate from 120 to 150 to see if I can tolorate the drug a little bit faster so that i can shorten my infusions. They currently waste 5 hours of my precious Sunday mornings every three weeks which I hate. I tried to get my insurance company to cover in-home infusions but they will only cover 80% if I go with inhome so I am stuck with going to an infusion center. I don't see why they would not cover 100% if it is cheaper for inhome over infusion centers?
I spelled it wrong. It is Gamunex-C here is the website. http://www.gamunex-c.com/. It is sucrose free so not as big of a risk for kidney damage. I get 40 grams IV every 21 days right now - I weigh 120 pounds. I have been getting this dose since I was diagnosed a year ago. My neuro is going to decrease me to 35 grams this Sunday to see if I can tolorate a lower dose. I am stable on 40 grams right now and only have mild symptoms of my disease and they seem to flare up close to my end of 21 days. Other than some mild vibrating in my feet at night and some burning sensations in my hands I feel pretty good most days. I don't get any major side effects with my infusion. I did get a headache the first time I ever got IVIg but the dose was the loading dose so twice as strong and they ran it in very fast for my body. I am at a different infusion center and they run my infusion much slower and have not had the headache since going slower. No flu symptoms either. But this stuff is really expensive! Gosh, i can't believe the bills I get from the infusion center. Good thing I am only expected to pay the $25 copay each time.
Hi Tess, I have just seen your post on your remission where you said that immume suppressants helped along with the IVIG. I wonder if you would mind giving me the name of the immune suppressants? I suspect that this may be a way forward for my son whose symptoms of weakness return about 10 days after IVIG and continue for 2 weeks until he can have some more IVIG. This has been happening for 8 months. Such a dreadful worry. he is due to be assessed again in June so I am trying to get all the information I can on what might help . Thanks
Thank you so much, chirpybirdy. I will be asking my Neuro about receiving the Gamunex-C. Chances are- since it's more expensive my insurance company won't approve it..though it has been good to approve the IVIg..so far, anyway. I received my 2nd round of IVIg a week ago now, and I'm doing well. My husband, on the other hand, is encouraging me to call of doctor every time I mention a nerve pain. I told him I have a feeling this is about as good as it gets, and I can certainly bear a little nerve pain, compared to the pain I had initially- before the infusions. The first few days after, I had the headache and a mild fever. It's just a bit bothersome. I'm thankful I can walk without a walker or cane. That is huge! No more intense buzzing in my body and the awful pins & needles and numbness. I do experience the nerve pain and some mild buzzing more at night than during the day.
Sounds like you are doing well. I'm happy for you that the Gamunex-C works well. Unfortunately, I have experienced weight gain (5 lbs)- didn't realize it could be from the IVIg. Yeah, i hear you; I certainly would not be able to afford the cost of the infusions if I didn't have the insurance to cover it.
chirpybirdy said:
I spelled it wrong. It is Gamunex-C here is the website. http://www.gamunex-c.com/. It is sucrose free so not as big of a risk for kidney damage. I get 40 grams IV every 21 days right now - I weigh 120 pounds. I have been getting this dose since I was diagnosed a year ago. My neuro is going to decrease me to 35 grams this Sunday to see if I can tolorate a lower dose. I am stable on 40 grams right now and only have mild symptoms of my disease and they seem to flare up close to my end of 21 days. Other than some mild vibrating in my feet at night and some burning sensations in my hands I feel pretty good most days. I don't get any major side effects with my infusion. I did get a headache the first time I ever got IVIg but the dose was the loading dose so twice as strong and they ran it in very fast for my body. I am at a different infusion center and they run my infusion much slower and have not had the headache since going slower. No flu symptoms either. But this stuff is really expensive! Gosh, i can't believe the bills I get from the infusion center. Good thing I am only expected to pay the $25 copay each time.
I did not know you could expeience weight gain from the IVIg. I have gained about 8 pounds and just can't seem to lose it no matter what I do. Maybe it is the IVIg. I never thought of that. I also don't get as much exercise since being diagnosed with CIDP. Everytime I think I am feeling good and start up an exercise plan I start to experience creepy-crawly sensations in my legs at night and it freaks me out. So I stop the exercising. I guess that could be the weight gain problem plus depression since diagnosed which causes me to eat for no reason, just to make me feel more comforted.
lindalmcc said:
Thank you so much, chirpybirdy. I will be asking my Neuro about receiving the Gamunex-C. Chances are- since it's more expensive my insurance company won't approve it..though it has been good to approve the IVIg..so far, anyway. I received my 2nd round of IVIg a week ago now, and I'm doing well. My husband, on the other hand, is encouraging me to call of doctor every time I mention a nerve pain. I told him I have a feeling this is about as good as it gets, and I can certainly bear a little nerve pain, compared to the pain I had initially- before the infusions. The first few days after, I had the headache and a mild fever. It's just a bit bothersome. I'm thankful I can walk without a walker or cane. That is huge! No more intense buzzing in my body and the awful pins & needles and numbness. I do experience the nerve pain and some mild buzzing more at night than during the day.
Sounds like you are doing well. I'm happy for you that the Gamunex-C works well. Unfortunately, I have experienced weight gain (5 lbs)- didn't realize it could be from the IVIg. Yeah, i hear you; I certainly would not be able to afford the cost of the infusions if I didn't have the insurance to cover it.
chirpybirdy said:
I spelled it wrong. It is Gamunex-C here is the website. http://www.gamunex-c.com/. It is sucrose free so not as big of a risk for kidney damage. I get 40 grams IV every 21 days right now - I weigh 120 pounds. I have been getting this dose since I was diagnosed a year ago. My neuro is going to decrease me to 35 grams this Sunday to see if I can tolorate a lower dose. I am stable on 40 grams right now and only have mild symptoms of my disease and they seem to flare up close to my end of 21 days. Other than some mild vibrating in my feet at night and some burning sensations in my hands I feel pretty good most days. I don't get any major side effects with my infusion. I did get a headache the first time I ever got IVIg but the dose was the loading dose so twice as strong and they ran it in very fast for my body. I am at a different infusion center and they run my infusion much slower and have not had the headache since going slower. No flu symptoms either. But this stuff is really expensive! Gosh, i can't believe the bills I get from the infusion center. Good thing I am only expected to pay the $25 copay each time.
I just assumed it was from the IVIg, since it has sugar in it. I don't get as much exercise either. I have started to walk our dog again. I do experience the "creepy-crawly sensations in my legs at night" you mentioned. I also still feel weak, and have managed to walk 4 blocks before I feel like I've got to go back. The fatigue is still a real factor, too. I continue to fall asleep if I'm sitting on the couch to read or watch TV. One more thing- and sorry to be graphic here- I have to bear down to urinate..and not much comes out at a time. Overall, I'm so much better than I was, and I'm thankful for the IVIg infusions.
chirpybirdy said:
I did not know you could expeience weight gain from the IVIg. I have gained about 8 pounds and just can't seem to lose it no matter what I do. Maybe it is the IVIg. I never thought of that. I also don't get as much exercise since being diagnosed with CIDP. Everytime I think I am feeling good and start up an exercise plan I start to experience creepy-crawly sensations in my legs at night and it freaks me out. So I stop the exercising. I guess that could be the weight gain problem plus depression since diagnosed which causes me to eat for no reason, just to make me feel more comforted.
lindalmcc said:Thank you so much, chirpybirdy. I will be asking my Neuro about receiving the Gamunex-C. Chances are- since it's more expensive my insurance company won't approve it..though it has been good to approve the IVIg..so far, anyway. I received my 2nd round of IVIg a week ago now, and I'm doing well. My husband, on the other hand, is encouraging me to call of doctor every time I mention a nerve pain. I told him I have a feeling this is about as good as it gets, and I can certainly bear a little nerve pain, compared to the pain I had initially- before the infusions. The first few days after, I had the headache and a mild fever. It's just a bit bothersome. I'm thankful I can walk without a walker or cane. That is huge! No more intense buzzing in my body and the awful pins & needles and numbness. I do experience the nerve pain and some mild buzzing more at night than during the day.
Sounds like you are doing well. I'm happy for you that the Gamunex-C works well. Unfortunately, I have experienced weight gain (5 lbs)- didn't realize it could be from the IVIg. Yeah, i hear you; I certainly would not be able to afford the cost of the infusions if I didn't have the insurance to cover it.
chirpybirdy said:
I spelled it wrong. It is Gamunex-C here is the website. http://www.gamunex-c.com/. It is sucrose free so not as big of a risk for kidney damage. I get 40 grams IV every 21 days right now - I weigh 120 pounds. I have been getting this dose since I was diagnosed a year ago. My neuro is going to decrease me to 35 grams this Sunday to see if I can tolorate a lower dose. I am stable on 40 grams right now and only have mild symptoms of my disease and they seem to flare up close to my end of 21 days. Other than some mild vibrating in my feet at night and some burning sensations in my hands I feel pretty good most days. I don't get any major side effects with my infusion. I did get a headache the first time I ever got IVIg but the dose was the loading dose so twice as strong and they ran it in very fast for my body. I am at a different infusion center and they run my infusion much slower and have not had the headache since going slower. No flu symptoms either. But this stuff is really expensive! Gosh, i can't believe the bills I get from the infusion center. Good thing I am only expected to pay the $25 copay each time.
What kind of costs have you had with IVIG treatments. Just getting started and don't know what to expect. I have insurance but don't know what they will cover. Thanks for any info.
I can only tell you that I live in Canada so the treatments are paid by the government. I can't tell you how grateful I am for living here since I have been diagnosed !
JanaC said:
What kind of costs have you had with IVIG treatments. Just getting started and don't know what to expect. I have insurance but don't know what they will cover. Thanks for any info.