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Living with Polyneuropathy CIDP, GBS, & CMT

Has anyone tried SCIG?

Hello, it’s been awhile since I was last here, so I hope I’m not repeating anything. I was wondering if anyone has switched from IVIG to SCIG for CIDP? What experiences have people had? Any information you could post would be helpful. Thanks!

Hi,

I was on IVIG for about 18 months for CIDP and then moved over to SCIG.

Initially I used a pump with a dose of 150ml a week which with Hizentra SCIG being 20% solution equates to 30g per week. I moved into push rather than pump about 6 weeks ago using same medication bit delivering it by pushing the syringe rather than a pump pushing it.

Stability wise SCIG has been brilliant for me, my IVIG had to be every 2 weeks to keep me stable and I suffered from migraines for 4 days after every session. With SCIG I dint have the highs and lows of OVIG and have minor side effects mainly relating to sore stomach or a bit of a sore head if I push it through too quickly.

What were you wanting to know specifically?

I have not used scig but another CIDP patient I know switched from IVIG and is using it and he has had good success. He does it once a week. He said he is glad it is working bc it makes it possible to travel. He winters in FL from MI and it would not be possible if he needed IVIG.
As with most treatments insurance was an issue at first but if you threaten to go with a different company they will work with you.

I moved from IVIG to scig for a year or so, but over time had to return to my weekly dose of 35 grams Gamunex-C thru IVIG because the maximum weekly dosage of Hizentra that I could get from scig (28 grams) was not sufficient to prevent my symptoms from progressing. The process of scig is easy once you get the hang of it, only dreaded removing the crazy-strong duct tape that they give you to keep the needles in place, as I have a hairy stomach and I was too stuborn to shave it :slight_smile:

I switched from IVIG to SCIG for four months, beginning in May of 2018. Sadly, I have returned to IVIG. I did not have a sharp decline. Rather, I became weaker, more numb, and more symptomatic very gradually over the four months I was on SCIG. I told my neurologist I was puzzled. I didn’t understand how it could be less effective, as it’s the same medication, just a different delivery system. She said she understood perfectly. She explained that with CIDP, I am not immunodeficient. My immune system is actually OVERactive. My immune systems thinks myelin is something that must be fought off, like flu, and sends its defective antibodies from the blood to the nerves to destroy my myelin. The way IG works in a CIDP patient is different than, say, a cancer patient who needs a boost because chemotherapy depletes their immune system. In a CIDP patient, those good antibodies attach to the defective antibodies in our blood stream, which are then carried out of the body in urine. With less bad antibodies in the blood stream, the bad proteins sitting on the nerves eating away at myelin are coaxed away from the nerves (where they do harm) into the blood stream (where they do no harm). Infusing IG into fatty tissue does, indeed, act like a time release. The IG is absorbed into the blood stream slowly over time. CIDP patients need a certain volume of the good IG in their blood for the treatment to work properly. The SCIG infusion didn’t result in an adequate volume of the good IG in my bloodstream. That explanation - in layman’s terms - made sense to me. I know some CIDP patients have had successful outcomes with SCIG. I did not. I am disappointed, because I loved the freedom to travel, do my infusions on my own while away, and not to have to be back home in time for my next infusion. Making travel plans did not center around IVIG treatment dates. I also thought SCIG would make it possible for me to make the Camino de Santiago pilgrimage through the North of Spain one day, but I’ll have to figure out another way (that’s IF I’m ever strong enough to attempt it).

I had great success with Tegaderm bandages. Duct tape sounds brutal! Alas, I also had to return to IVIG. (Explanation in a separate post in this thread.)

Lisa, I just saw your post and was wondering if you could shed some light on SCIG for me. I started the SCIG last week and finished my 2nd treatment yesterday. I have not seen any changes in my strength yet, so was wondering how many treatments it took for you to see results. They have told me that it will take at least 3 to 4.

thanks

Hi Jon,
Sorry only just seen your reply.
I didn’t get an improvement as such with SCIG I just maintained the strength I had in IVIG without having to go to hospital every 2 weeks. Did you have IVIG before you started SCIG?

Luckily they dont have a 28g a week maximum at my hospital as I am on 30g a week. I have a limit of 40ml per site but not a total maximum.

Thanks for your message Lisa. No, i tried IVIG several years ago and got the headaches severely, so they said I couldnt do that anymore. I then started getting plasmapheresis in hospital and I did that several times and I then went into remission for almost 4 years! It came back in November and I did another stint in hospital (9days), getting the PE. But it has come back again and I asked doc if I could try another form of treatment which is why I started the SCIG. So I am not sure if I will have to go back in to get another PE to get me back on track and then continue with SCIG to maintain it after that, or if the SCIG will actually turn my condition around on it’s own. I have been told that once I get enough in my system that I will see improvement, but that it will take at least 3 or 4 before I notice change. I have had 2 so far. But it is good to know that I have an option for maintaining whenever I get my strength back. I am in pretty bad shape right now with very little strength in my hands, feet, legs, etc.

thanks so much Lisa for your time and I hope you continue with your progress and in keeping this crazy disease under control!

Is is Hizentra you are getting by SCIG?

Hi Jon,

Yes it is Hizentra I have I think that’s the only choice for SCIG in the uK at the moment but could be wrong.

It will probably take a while for you to see a benefit but it will vary much like people response to IVIG does. How much and how often are you infusing?

I am doing 20ml per week.

Just started SCIG. Have had two half doses of 50ml Cuvitru 20% my next dose will be 100ml and moving forward will be 100ml every other week. So far it’s gone great. The treatment wasn’t painful or gross and no site reaction or dreaded side effects. Hopefully the 100ml dose goes as good. CIDP symptoms were bad when I began a couple weeks ago and will HOPEFULLY get better in the next 2-3 weeks.

Hi, I hope this helps you but everyone is different. I was on IVIG for a year at first for two consecutive days 6 1/2 hrs each 90g each once a month and then we changed frequency to every two weeks at 90g Seemed as though I needed more frequency as I would run down I went on SCIG in Dec of 2018 two infusions each week. At first I thought it was helping but was back having problems with walking using walker or cane depending on the day. Had a lot of leg and hand arm pain as well . In March my Doctor said he’d like to take me off for 6 weeks or so and do ECG measurements before go off and after the 6 weeks to see if I was improving. Drs thought I was improving and may be able to stay off. Unfortunately my second ECG was much worse and I’m now back on IVIG every 10 days with likelihood of going in a research group in 4 months in addition to the IVIG
Two of the weeks I was off I felt like a million bucks but it didn’t last SCIG was nice that you were free at home I was unable to do by myself and needed help with the needles and felt bloated all the time. If it works for you it gives you more of a life since you can select time and freedom to do things at home. Hope it works for you[quote=“LisaM, post:8, topic:3921”]
SCIG?
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