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Living with Polyneuropathy CIDP, GBS, & CMT

IVIG or SCIG?

I’ve been having IVIG every four weeks since 2014. I spend around half a day in hospital for the infusion. My reading indicates that I could administer SC myself without being constrained by requiring hospital admittance. I also understand that SCIG would be required to occur a couple of times a week. It also occurs to me that this would mean a more ‘consistent’ flow of IG rather than the four weekly peaks I receive at present.
I’d appreciate any collective thoughts.

Hi! I have had to go every three weeks to an infusion center a half hour away from my house. While they are very nice there, I want to continue to work full time for as long as I can. I also don’t like having to be stuck repeatedly in my very hydrated veins. I went to a speaker program for the subQ kind and asked my neurologist if I could try it. I had my very first experience with it yesterday. I had NO problems at all. I will be doing it every week, whenever I want and wherever I want. I am so happy that I was able to switch. I haven’t done it long term yet, but I plan to if all goes well. I hope it does for you!

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I was getting IVIG from 2007 through 2018, and my vein access was becoming nearly impossible, even for well-trained nurses. I went to a SCIG demo program put on by CSL Behring, and a patient demonstrated what it was like to self-infuse. Starting in January of 2019, I made the big switch, and it’s been life-changing! Rather than taking 6 hours every month, it now takes about 90 minutes once a week. I’m able to travel, as I merely have to bring enough supplies for the length of each trip. I never have to worry about vein access. The level of IG in my system is much more consistent. Plus, I no longer have the occasional side effects (like dizziness, light-headedness or headaches).

For me, it’s been nothing but positive. Chat with your doctor about this, as it can’t hurt to try making what will probably be a huge improvement in your quality of life.

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Hi I also have been receiving IVIG every 3 weeks since 2014. At first 3 infusion cycles I at at the hospital in the oncology unit. First it was way to expensive my neurologist here in north Texas set me up with a home health nurse and a pharmacy to send my meds. I now only have on thing that I must do and that’s get my bloodwork. I no longer have out of pocket expenses my nurse and I have become friend she is at my home about 2.5 hours bepending on how I feel, BP ect. She runs me on the slower side then most of her infusion patients. She is a great nurse… Dawn Milne

Polly would you be kind enough to give me a brief account of what and how you do the subQ I have never been offered this to me thank you so much.

I was SO GRATEFUL when I learned that SCIG has finally been approved for CIDP patients! I don’t want to be a downer, but I need to let you know my experience so you know what to look out for. Bottom line: I’m back on IVIG. I did SCIG for four months about 1½ years ago. My health did not decline suddenly, but I became weaker very gradually over the four months I was on it. I did not understand. After all, it’s the same drug, just a different delivery system! My neuromuscular specialist explained that IG does not work in a CIDP patient the same way it works in, say, a chemotherapy cancer patient. In their case, their immune system is depleted, and IG boosts it. With our disease, our immune system is OVERactive and “eats” myelin for lunch. With IG treatments for us, the good proteins (IG) attach to the bad (myelin-eating) proteins in our blood, and are then passed out of our bodies through urine. When there’s less bad protein in our blood, the bad proteins sitting ON our nerves, munching away at our myelin, are coaxed away/off of those nerves and into our blood stream, where they do no harm.

SCIG does, in effect, act as a slow-release medicine, as it is stored in our body fat (wherever we choose to infuse it), and is released over time into our blood streams. My neuro said I was not achieving the levels of good proteins in my bloodstream that I needed to let the IG do its work in my body. Fortunately, the decrease in strength was not permanent; I have regained it since returning to IVIG infusions.

I absolutely LOVED the freedom of being able to do my own infusions. I could travel and not worry about being back in time for my next scheduled IVIG! Unfortunately, SCIG did not work for me long-term.

On the up-side, SCIG may not be permanently out of my future. I hope one day to make the pilgrimage of El Camino Santiago de Compostela. They recommend about 33 days to complete that walk through the Pyrenees and the North of Spain. I asked my neuro if, since my health did not take a nose-dive with SCIG, she would be willing to prescribe it again if/when I am strong enough, to sustain me while I am on that trip, and then I would return to the IV form of the drug when I got back. She said she would be willing to prescribe it that way, but the hurdle would be whether or not my insurance company would approve/pay for it.

The freedom of SCIG was AMAZING! Don’t let me story discourage you from trying it. Clearly, it was successful for some CIDP patients, or it would never have been approved by the FDA for treatment of it! Just watch for gradually increasing numbness and/or loss of strength. I hope and pray you are successful in switching to SCIG!

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A friend of mine just finished walking the Camino. It was an amazing experience. I hope you continue to feel well and hope you will be able to walk the Camino and continue to do everything active thing in your life.

I heard about Hizentra and went to one of their speaker programs and learned so much. I asked my doctor if I could try it. He was reluctant, but said yes. I watched a couple videos on YouTube also. In simple terms, you take the room temperature Hizentra and put it in a large syringe. You put the syringe into a small pump that you can carry around with you easily. The end of the syringe has a tube (the diameter of the tube determines the speed that the fluid flows through) that connects to multiple tubes (depending on how many you need) that have needles at the ends of each. They are small and remind me of a tack. You put the needles in the appropriate spots and tape them in place. You start the pump and let it go until it is done. You do a second syringe if necessary. When complete, you pull the needles out and you are done other than cleaning everything up! Let me know if you have more questions!

I have been on SCIG for years. It is more convenient, less side effects, and can be on your schedule. The only drawback is having to do the needle sticks yourself. I have a 6 needle catheter but I still prefer because I was having awful side effects.

Thank you so much I have a port due to having literally no veins. My infusion is 30gm every 3 weeks. How often do you think the you get is the amount buy weight such as Gammaplex? I got CIDP from getting Gillian Barre Syndrome I drank bad water at Arches National Park in Moab Utah. Very much no fun may I ask how you got it? I now have some other autoimmune things I was just diagnosed with Hashimoto Disease I am very unhappy with doctors hear in North Texas I’m from New York and health care here is terrible.

Thank you all for your collective input. It has been helpful to me and confirmed a lot of my reading. Even the experience of ‘want_to_dance_again’ is helpful.
In answer to Dawn’s question, I have 35grams of Privigen every four weeks. I am unsure how CIDP started in me - could have been a flu injection?
I see my neurologist in March so will bring up SCIG with her.