SCIg after IVIG
March 23, 2020 at 2:51 pm
Hello – I have been getting Gamunux C IV for 10 years every 4-5 weeks without any problems or symptoms from the infusions. Recently my doctor tried to push me out to 6 weeks and it threw my whole body off. I now have pulled back to every 3 weeks but I now have symptoms of my CIDP start to appear about a week and a half after my infusion. So I don’t seem to be getting as much response for long enough anymore from the IVIG. I discussed with my doctor maybe going to SCID for a while as then I can administer it twice weekly to avoid the peaks and valleys with IVIG. He said that sounds like a good plan. But my fear is that I would be switching from Gamunex C to Hizentra because Hizentra is 20% and Gamunex C is only 10% so less fluid volume would be required under the skin. I am worried that I will have a reaction to the new drug Hizentra that I don’t get with Gamunex as I know each Ig product is made with different stabilizers and additives. So I don’t know if it would be better to take the chance and stay on IVIG with Gamunex (known not to cause any problems with my body) and hope that after a few months my mild symptoms disappear between infusions or move to SCID but take the risk that I might have a reaction or not respond to it as well. Does anyone know if Hizentra is associated with a lot of reactions or kidney damage? Do people like doing the SCID more than IVIG once switched over? Do you get hard lumps in the incision sites after a long time doing SCID? I am just having mixed feeling whether I should go with SubQ route or stay on IV route.
May 15, 2020 at 3:33 pm
Hi I know this question is a little old but I have been doing SCIG for about 10 weeks now. I was worried there might be a problem injecting myself but the whole process is easy. I do have more energy each day and am very glad I made the switch.
May 16, 2020 at 1:52 am
I was on Privigen every 2nd week for 18 months then move to Hizentra SCIG. You do have lumps until your body moves the fluid on, the very small needles are subcutaneous which means the fluid is injected between the skin and flesh layer over time you developed what is called a pocket between the two layers which is harmless.
I wish I was able to continue on this, but I have a crazy immune system I developed a large red rash around the sites and belly button. I went back on to Privigen, which I had an allergic reaction, so now I have to have antihistamines before each infusion and two aspirin due to it increasing my blood pressure during the infusion. The neurologist and hematologist say I am a rare species or their problem child 😉
That’s me, but I have heard a lot of really good experiences and happy people just like harryswope
May 16, 2020 at 8:50 am
Hi all, I just noticed this post as well. I posted s similar one under the CIDP section. I move over to SCIG (7 weeks ago) and I do not seem to be getting the same benefits from it. One issue is that I felt just before I moved over from IVIG, that my symptoms were already worsening so hard to tell if it is the SCIG or it was already happening.
All said, the process is easy and I am fortunate at least that I get no side effects. I have heard good things from most that use it as well so am hoping I can get back to my new normal and proceed with SCIG…
An IVIG boost on top of the SCIG may be the next steps from my Neurologist as currently nothing seems to be working.
May 16, 2020 at 7:17 pm
There have been many forum discussions threads about SCIg! Please see the following conversation and its links to other threads on the topic:
Regarding redness and itching at the infusion sites following injections: some forum participants have had good results from applying Benadryl 2% cream to the area immediately after infusion and again that night. Some report zero local reactions using this approach. It’s over the counter and readily available at pharmacies:
May 17, 2020 at 3:01 am
The redness for me was blistering and red scales Benadryl cream didn’t do anything, I have 20 cm diameter light scar marks on my stomach from the treatment my wife calls them crop circles.
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