SCIG advice

[Jackdaw]

If one was to try SCIG for their ME (because they couldn’t get IVIG ) then:

What is the ideal dose?

How often should the dose be given?

Is there any tests or meds that are needed to reduce risk?

Any other info?

If anyone has experience with SCIG in the UK I would be grateful to hear from you. Especially in regards to hiring a nurse to administer it.

Thank you.

 

[wigglethemouse]

You may find this video helpful - it discusses both IVIG and SCIG

This paper is also worth a read
Subcutaneous IgG in neurologic diseases
https://www.futuremedicine.com/doi/pdf/10.2217/imt.13.146

What is the ideal dose?

You don't say wether SCIG would be for immune deficiency or autoimmune. In the video above Jill Scholfield talks about autoimmune being typically 1-1.5g/kg monthly dose.

How often should the dose be given?

The dose is normally split into weekly infusions but can be done less often or more often.

Is there any tests or meds that are needed to reduce risk?

Similar meds as for IVIG to lessen the reaction. @Gingergrrl has many posts on IVIG premeds if you search.
Regular safety labs are needed as some folks get hemolytic anemia or other serious side effects.

If you know the brand of the drug you can also read up on the technical information they provide for patients and providers.

This post and others also has more info
https://forums.phoenixrising.me/threads/question-regarding-immuno-globulin.75359/post-2185463

 

[wigglethemouse]

If one was to try SCIG for their ME (because they couldn’t get IVIG ) then:

Was there a reason for not getting IVIG? SCIG is just a different infusion method for Immunoglobulin, normally for those that can't tolerate IVIG.

 

[Jackdaw]

Thanks @wigglethemouse

Videos are tricky for me.

Theoretically it is for autoimmunity but I know you can’t get the big doses on SCIG. I was wondering what sort of dose was usual when it was for ME in a vague hope it helps way.

SCIG because it is way cheaper, I am very severe so leaving the house extremely difficult/expensive and less risky I believe.

 

[wigglethemouse]

Theoretically it is for autoimmunity but I know you can’t get the big doses on SCIG

Yes, you can get autoimmune "big" doses with SCIG. Try this calculator from one of the pump manufacturers - you can choose up to 8 needle sets I believe for 8 infusion sites
https://www.rmscalculator.com/

I was wondering what sort of dose was usual when it was for ME in a vague hope it helps way.

In the US IgG therapy is not covered by insurance for ME.

 

[Jackdaw]

I know it isn’t covered by insurance in the US but people have received it for ME and I wondered what the usual dose was from the doctors that try it for ME. I don’t think I can afford the big doses. I am not in the US.

Thank you for the information @wigglethemouse

 

[Gingergrrl]

@Gingergrrl has many posts on IVIG premeds if you search.

I apologize I didn't get to read this in detail right now but please let me know if you have specific questions about the IVIG pre-meds that I used (or any other questions about IVIG as it was used in my case). I have not done IVIG since July 2018 (one year ago) but I did it for a total of two years and still remember everything that we did if it can be helpful to anyone.

 

[katarina]

I know this post is a bit old, but I’m on 50ml Hizentra twice a month. I take prednisone, zofran, Advil, and Benadryl the day of. I don’t have significant side effects from Hizentra. I have CVID, ME, POTS, hashimoto’s, neuropathy, and a handful of other conditions. The Facebook group “IVIG support group” was immensely helpful for me

 

[katarina]

There’s also a lot of tricks to know how to get it approved through insurance like qualifying through one of their diagnoses. Personally my igg numbers weren’t low enough to automatically have me covered, so I got a vaccine to show I couldn’t make antibodies to it. There’s a lot of blood work and it honestly depends a lot on how knowledgeable and experienced your doctor is at getting SCIG and IVIG approved by insurance. Some insurance companies are more stingy than others with it too.

 

[katarina]

A little update: I upped my dose to 15g (75ml) every 2 weeks from 10g because my neuropathy and other symptoms were coming back in the days leading up to my next infusion. This dose is working much better for me. Your dose is calculated by your weight though as well. I weigh 135 lbs