May 16, 2017 at 9:33 am
Liam, I was having horrible symptoms before I started IVIG — the worst being jolts of nerve pain down my legs that were bad enough to make me grab onto things to keep from falling. The first round of five infusions took away the nwrve pain entirely. Such a relief. I’m three infusions into my third round of five. I have severe nerve damage in both legs, and my neurologist didn’t even hold out hope of getting my legs back to normal. His goal (and mine) was to prevent loss of function from spreading to my arms and hands. Yet I am regaining strength in my legs! I walk with a cane all the time. My balance is still bad, but I’m improving so much that I have a lot of hope for the future. Because I am also severely immune deficient, I will take IVIG every month for the rest of my life. It’s a nuisance, but it’s worth it! After all, the many people I know with diabetes take insulin every single day and don’t grouse about it. They’re just glad to be alive, and so am I.
SandyMay 5, 2017 at 8:42 pm
I would never be able to tolerate those doses of steroids. I already have osteoporosis and that much steroid in any form would destroy what’s left of my bones. And the oral doses would destroy my stomach. I have significant motor control issues, so I hope IVIG comtinues to help me.May 2, 2017 at 2:32 pm
I saw my neurologist this morning, and I’m happy to say he’s changing my infusion schedule to Monday & Thursday, Monday & Thursday, Monday, to prevent headaches. Last month after 5 straight days I was in so much pain and felt so sick that I could barely move for a week following the 5th infusion. I think spacing them out and maybe slowing down the infusions will help a lot. I start MondY. Wish me luck!May 1, 2017 at 6:25 pm
BTW, I only learned a few days ago that the infusion fluid is supposed to be brought to room temperature before being administered. My nurse has been giving it to me ice cold, straight out of the fridge.May 1, 2017 at 5:51 pm
My insurance will only cover Gammunex — the only gamma infusion in their formulary — but I’ve read some people have fewer side effects if they change branda. I talked today with the nursing supervisor at my infusion service about my terrible headaches, and she suggested changing brands and offered to try to get me an exception from the insurance company. I don’t believe they’ll go for it. But I’m seeing my doctor tomorrow about stretching out my infusions a little so I don’t get hit with 5 huge dooses on consecutive days. I’m also getting a different nurse because the one who did my first two rounds just can’t deal with my small veins.
Good luck with your treatment!
SandyApril 30, 2017 at 3:40 pm
Each patient is different. A careful doctor won’t follow a one-size-fits-all formula but will tailor treatment to the individual patient — how severe your condition is, how you reapond to intial treatment, etc. I’m getting 25 grams a day for 5 days each month, which is the maxiumum dose my insurance company will allow for someone my size. My neurologist said he wants me to get this dose for at least 6 months before he does another EMG. I already had severe nerve damage in my legs by the time I was diagnosed (thanks to my pain doctor, who kept telling me for a solid year that I was just “out of condition” and all I needed was more exercise). I don’t expect to ever walk normally again. The IVIG, after two 5-day rounds, has stopped the nerve pain in my legs, which is a blessing, but I’ve regained only a minimal amount of strength so far and my balance is still very bad. My nwurologist says I just have to keep going, and the progress will build month by month. But if I’d been on this regimen for a full year with no results at all, I would ask about moving on to plasma exchange.
Have you had an EMG recently to find out what effect the treatment has had on your nerves?April 26, 2017 at 9:43 am
Another question: Does spreading out the infusions, instead of getting them five days in a row, help with the side effects and discomfort, as well as the “down time” as the effects wear off? Have you tried this? At what intervals do you receive infusions?April 26, 2017 at 9:23 am
The nurse isn’t really my problem. All my life, techs and nurses have had trouble drawing my blood for tests because my veins are so small, so I should have expected problems with infusions. Because the fluids are pumped in, not dripped, more pressure builds up in the line. Twice my needles have broken, and they’ve popped out of veins several times. I’ve had bleeding at the needle insertion site, and a painful buildup of fluids under the skin. One thing that worries me is that once when fluids got under my skin my forearm swelled and turned red. I’m afraid this indicates poor tolerance of subq. Lots of questions for the administrative nurse and my doctor!April 25, 2017 at 11:55 pm
So far I’ve had two rounds of infusions, 5 straight days once a month. By the end of those 5 days my veins are begging for mercy and both my arms ache. Right now, almost three weeks since my last infusion, I still have bad bruises and pain. And soon it will be time for another round of infusions. The thought of doing it this way for the rest of my life makes me weep. At the very least, I need to spread the infusions out over the month. As I said, I’m seeing my doctor next Tuesday and will discuss the options. I aporeciate everyone’s comments and your shared experiences.April 25, 2017 at 11:49 pm
Jim, thanks so much for those links to previous discussions of this subject. I’m relatively new here and have had trouble navigating the site.
SandyApril 25, 2017 at 11:47 pm
This information from the Immune Defiency Foundation concerns the high rate of complications caused by implanted ports. It makes me very reluctant to go that way. I’m very prone to infections and sensitivities to foreign objects in my body. I had a PICC line for 6 weeks once and it drive me crazy.April 25, 2017 at 7:17 pm
The latest information I’ve read about ports is that the infection rate among immune deficient patients is so high — 26% — that the majority of doctors have stopped using them. Some of the infections have been life-threatening. I want to get away from having anything — including infusion connections — stuck in me 24 hours a day. I’ve had major problems when trying to keep the needle in for five days and nights. I’ll spare you the details, but both my forearms are covered with painful bruises and some of my veinns are so sore I can hardly bear having anything even brush against my arms. The nurse has to change my needle to a different locationseveral times during each infusion and remove it for the night. I need a better way. I have both CIDP and a primary immune deficiency, and I will need gamma globulin regularly and frequently for the rest of my life.
I’m seeing my neurologist next week and will discuss this with him then. I’m also going to talk to the head nurse at the infusion service I use and learn about what’s involved in making the transition. I was hoping to find someone who is using SCIG successfully and could relate his/her experience.
Thanks for your response.April 16, 2017 at 11:48 pm
GH — I can’t take large doses of cortisone in any form because I have osteoporosis and pred would further weaken my bones. So I will never be trying that. I’ve already had serious fractures, and even the insurance company agrees that I can’t take it. In any case, my neurologist and the other doctors who share a practice with him say they they never use large-dose cortisone because it’s too dangerous.April 13, 2017 at 10:19 pm
And I am definitely being helped. The first five-day treatment took away all of the terrible, stabbing nerve pain down my legs. It hasn’t returned. A headache, even a bad one, was a small price to pay for that blessing. This month, I’m feeling a return of strength in my legs. At this point, I’m no longer giving headache relief priority. Maybe later, after I’ve achieved more mobility and strength, I’ll be more willing to slow it down to get rid of the headaches.April 13, 2017 at 10:14 pm
I’m getting IVIG for three hours each day, five days a week. You’re getting yours in just two days a week? I don’t know what’s faster and what’s slower. For me, it seems to take a lot of time out of each month.