How many of you have switched from IVIg to subcutaneous Ig SCIg therapy? How frequent are your treatments with SCIg? Any get the new SCIg containing hyaluronidase? Supposedly, it allows treatment once a month.
I can't comment on the SClg but I would be interested in finding out more about it. I am currently on IVIG every three weeks.
I have just received a letter from my neuro to discuss this treatment and possibly trying it !!!
Hello,
I used to be on IVIG for 2 consecutive days every 3 weeks.
After approx. 2 weeks into the treatment I would get light symptoms developing into more severe symptoms approaching the next treatment.
My Ig nurse proposed SCIg and I discussed it with my Doctor who initially blew it off, but I persisted and changed to SCIg in April last year.
I have had no severe symptoms since I started, but feel weak and 'tingly' at times.
Treatments take place twice a week by applying 6 short needles to designated sites and pressure is supplied by a mechanical pump.
The Ig is on a "time-release" from the fatty tissue that way and provides a steady level of anti bodies in my blood.
I get a Fedex delivery once every 4 weeks and do everything myself.
Upsides: No serious relapses, flexibility in life, delivery at home, less Neuro visits since ........better health.
Downsides: Sore injection sites for a day, more time consuming than IVIG.
The shipment comes with a great Lidocaine numbing cream for the skin that makes applying the needles much easier.
Hope this helped a bit.
I recently went to see Dr Mohammed Khoshnoodi at John Hopkins in Baltimore. Dr. Khoshnoodi suggested this form of treatment to me. He said that clinical trials have shown that SCig has been very successful. I currently receive IVIG every three weeks. He just increased my dose so we are going to continue with the IV method for the next couple of months and then switch me to the subcutaneous delivery method. This is a great topic that I would like to learn more about. Thanks for your contribution!
I would just like to add that I was extremely impressed with Dr. Khoshnoodi and John Hopkins. They have some of the best CIDP doctors in the entire country!
I’m curious as well. I get IVig EVERY week and have for the past 12 years…only upside is it forces me to rest. I see Dr Brannagan in NYC
I switched to SQIG about 6 yes ago. Wasn’t my doctors favorite idea but he’s especially now using it with children and the elderly. I was getting awful disabling side effects from Ivig that were just building getting so awful…fever. Painful Fatique.
Clinical Menengitious. Sorry about the spelling. The damage to my liver. Kidneys. For me it was move or quit.
As usually I walked into the doctor with a pile of research. He looked over at the stack and said let’s try it. I like it when a man knows he’s going to lose an argument anyway and just saves us time.
I can never ever …will not go back. The minute of my first Sqig. I put down my cane and its not been picked up since. Immediately I felt better. Because my Brain stem was no longer swollen. Got lots energy and even hauled heavy industrial sewing machines down stairs. Haul…slide… Drop …they all got down there.
I started getting out doing things. At my age I wasn’t ready to look in the mirror and sing “I feel pretty” but I felt like it.
Of course There are ups and downs. Some Days stress wins. At times my body feels like it fights off a flu. And yeah for that.
Two other changes happened. I was seeing a change with otc oral B12. He said you can’t get enough that way. And I now use B12 shots…so easy…and in winter in the north we need more vit. D. With those two in high doses .Both of these help to heal nerve damage if its not beyond repair. So I spend time healing not letting my nerves get damaged.
Two
My service dog and best friend got older and sicker. I started delaying and adjusting my sqig schedule around Willies bad days. I noticed ever other week worked More was too much. I can now go every three weeks. Since I procrastinated the last one at the end if summer visit. I am going to once a month. He’ll say yes right. ???
I saw him last weeek . he shakes his head from 9/21/11 when I came in barely walking in with a cane.He ordered the electric wheelchair Dir me.
We hit fifteen years. He said there was a lot of ways we could have gone.
To choose from fifteen years. That then he has a feeling being my dad infused Ivig for ITP. Its been in my life over forty years. I had no fear and didn’t expect instant results He then thought with compliance I would do well on Ivig.
He’s a happy doctor. We have always keep our minds. Open to changes new on market. And discuss them.
Because side effects are so little with sqig a nap a lit for a day after or an event does it. . When I did it twice a week no side effect . Its a matter of working it into your life style vs medical needs. I have many AU diseases so it works on all. I can go out.I can go out and walk my new service during infusions …put off my sq infusion till after my bungee cord jump. Because the water looks bad .So I have all this and mean all of it but the bungee jump. I try hard not to jump off things. Good luck with your decisions. God Bless.
I'm excited to be able to switch to SCIg after my last IVIG in 4 days, though I still need to do some research about the cost, components in the product that can increase side effects especially in older people ( me, 79). I have my doctor's blessing to start off once a week for a few weeks then switch to the once a month product Hyqvia by Baxter IF the cost isn't too high and my insurance covers most of it. Just think: less visits to centers, hospitals, & offices. More flexible schedules. Fewer side effects with more even results. I can envision a slow migration to SCIg from IVIg as more and more patients become aware of this treatment and ask to switch. Let's keep in touch with our experiences, remembering what works for one may not work for another. Ask your doctor.
I switched from IVIG to SCIG for one summer. My experience was ok but I found that the SCIG was more invasive of my time than IVIG. With IVIG I am fortunate enough to only have to get an infusion every 4 weeks and I do at-home infusions. When I switched to SCIG I had to infuse myself twice weekly. I found it more painful because I had to use 4 tiny needles each time in my leg or tummy. Also the site where the IG went in got swollen, red and itched a little for a day. I ended up going back to IVIG because I was afraid of getting the 'hard knots' that sometimes appear in your skin at the infusion sites because of scar tissue from the little needles. The good thing with doing SCIG is that I could do it any time that worked for me. I would sometimes wait until everyone was in bed and then hook myself up and watch TV late at night. So it didn't have to consume my day hours. I even took it to work once and a while (I have a desk job so the environment works for having the pump hooked up). I did switch back to IVIG because I am fortunate enough not to have any side effects from my IV infusions so for me the ease of IV outweighed the pros from doing SCIG. But I do know this... If for any reason in the future that I stop having good reaction to my IV infusions or I start to have side effects, I won't hesitate to switch back to SCIG. It was a good experience and I do recommend it to people who are having problems with IVIG. I hope in the future they find a way to make it so that we don't need to deliver so much of the IG under the skin... maybe like a diabetic pump that gives a tiny bit constantly under the skin. Who knows.
Thanks so much for your contribution and experiences with both IVIg and SCIg. Are you aware of the newer product, Hyqvia by Baxter Labs. It has hyaluronidase which helps break down the tissue under the infusion site, allowing the fluid to be infused more easily. It is a promising new treatment that starts with once a week treatments to gauge any reactions then moves to once a month therapy just like IVIg. If you do switch back, this may be the way to go once discussed with your doc.
chirpybirdy said:
I switched from IVIG to SCIG for one summer. My experience was ok but I found that the SCIG was more invasive of my time than IVIG. With IVIG I am fortunate enough to only have to get an infusion every 4 weeks and I do at-home infusions. When I switched to SCIG I had to infuse myself twice weekly. I found it more painful because I had to use 4 tiny needles each time in my leg or tummy. Also the site where the IG went in got swollen, red and itched a little for a day. I ended up going back to IVIG because I was afraid of getting the ‘hard knots’ that sometimes appear in your skin at the infusion sites because of scar tissue from the little needles. The good thing with doing SCIG is that I could do it any time that worked for me. I would sometimes wait until everyone was in bed and then hook myself up and watch TV late at night. So it didn’t have to consume my day hours. I even took it to work once and a while (I have a desk job so the environment works for having the pump hooked up). I did switch back to IVIG because I am fortunate enough not to have any side effects from my IV infusions so for me the ease of IV outweighed the pros from doing SCIG. But I do know this… If for any reason in the future that I stop having good reaction to my IV infusions or I start to have side effects, I won’t hesitate to switch back to SCIG. It was a good experience and I do recommend it to people who are having problems with IVIG. I hope in the future they find a way to make it so that we don’t need to deliver so much of the IG under the skin… maybe like a diabetic pump that gives a tiny bit constantly under the skin. Who knows.