Starting SCIG/ Cellcept Very Soon!

[crypt0cu1t]

Hello everyone,

I just wanted to create this thread as a general update thread on my condition in case anyone wanted to follow or hear how SCIG works for me with the illnesses that I have been diagnosed with (Autoimmune Encephalitis, Autoimmune Dysautonomia).

I'll be starting 60g weekly SCIG for approximately 2 months and then we will be adding cellcept. We have plans to add rituxan eventually, but for now we are sticking with SCIG/Cellcept.

I'm also working with a very well known doc to treat any possible infections (which I may have but I'm not sure).

I'd say as of right now, my overall function is severely limited. I am about a 3.5/10 and I am to get to a consistent solid 6-7/10 (which is where I was post Plasmapheresis.

As of now, I have;

Abnormal PET Scan (Cerebellum, Occipital, Brainstem & Parietal hypometabolism)

HighESR/CRP
High AChR Ganglionic Antibodies
High AChR Binding Antibodies
High Salivary Protein 1 Antibodies
High Interleukin 10

The reason that I mentioned the above abnormalities is because I'll be repeating all of those tests every few months as a way to measure my progress and see if there are any changes.

@Gingergrrl @Learner1 @Aerose91

 

[Gingergrrl]

I just wanted to create this thread as a general update thread on my condition in case anyone wanted to follow or hear how SCIG works for me with the illnesses that I have been diagnosed with (Autoimmune Encephalitis, Autoimmune Dysautonomia).

I would definitely like to follow your treatment journey and thank you for tagging me. I wish you the best and hope that everything goes smoothly.

I'll be starting 60g weekly SCIG for approximately 2 months

I wanted to make sure that I am reading this right b/c 60 grams per week seems like a very high dose (in general) and also very high to do via SCIG vs. IVIG.

 

[crypt0cu1t]

I would definitely like to follow your treatment journey and thank you for tagging me. I wish you the best and hope that everything goes smoothly.



I wanted to make sure that I am reading this right b/c 60 grams per week seems like a very high dose (in general) and also very high to do via SCIG vs. IVIG.

That's what I thought too! I'm pretty heavy now at almost 240lbs so I'm not sure if that effects it

 

[Gingergrrl]

That's what I thought too! I'm pretty heavy now at almost 240lbs so I'm not sure if that effects it

That would definitely affect it and IVIG dosing is based on your weight. I did 82 grams every 3-4 weeks in a 3-day split dose (b/c I required a much slower infusion speed than the average person).

I'm assuming if you are doing SCIG that your dose will be split up (or will it be 60 grams at one time)? I've never done SCIG but had always thought that it was meant for much lower doses. Will you be doing it at an infusion center or at home?

* edited to clarify that your dose is not only based on weight and there are other factors, too. But the initial formula uses your weight and then the other issues are taken into account.

 

[crypt0cu1t]

That would definitely affect it and IVIG dosing is based on your weight. I did 82 grams every 3-4 weeks in a 3-day split dose (b/c I required a much slower infusion speed than the average person).

I'm assuming if you are doing SCIG that your dose will be split up (or will it be 60 grams at one time)? I've never done SCIG but had always thought that it was meant for much lower doses. Will you be doing it at an infusion center or at home?

I'm doing it at home once weekly! I was under the impression that SCIG was meant for immune deficiency, but my current doctor said he has seen success with it for autoimmune disease done I'm higher doses.

 

[Learner1]

I'm doing it at home once weekly! I was under the impression that SCIG was meant for immune deficiency, but my current doctor said he has seen success with it for autoimmune disease done I'm higher doses.

Thanks for tagging me. I'm interested in how youre doing.

I have both autoimmunity and Immunodeficiency. From what I've understood, the gammaglobulins dose for immunodeficiency is around .4g/kg/month but for autoimmunity, it's .75-2.0g/kg/month.

I do it for both, and my doctor has suggested SCIG, but my lymphatic system can't tolerate that much fluid. How will you get 60g in a week subQ?

And how will it be easier to tolerate than IVIG? Will you get support meds?

Hope things work out well!

 

[crypt0cu1t]

Thanks for tagging me. I'm interested in how youre doing.

I have both autoimmunity and Immunodeficiency. From what I've understood, the gammaglobulins dose for immunodeficiency is around .4g/kg/month but for autoimmunity, it's .75-2.0g/kg/month.

I do it for both, and my doctor has suggested SCIG, but my lymphatic system can't tolerate that much fluid. How will you get 60g in a week subQ?

And how will it be easier to tolerate than IVIG? Will you get support meds?

Hope things work out well!

I'm not sure how it works in terms of SCIG but I'll be having someone come to the house for a month to show me how to do it. I'll probably have to do it over a couple days.

He explained to me that SCIG is generally much better tolerated than IVIG, which is great because of my past reactions to IVIG (I'm sure you remember).

 

[Learner1]

I'm not sure how it works in terms of SCIG but I'll be having someone come to the house for a month to show me how to do it. I'll probably have to do it over a couple days.

He explained to me that SCIG is generally much better tolerated than IVIG, which is great because of my past reactions to IVIG (I'm sure you remember).

Yes, I do. Well, I hope you get all benefit this time!!

Glad to hear you're considering Rituximab. Just make sure you don't have any infections simmering away when you try it.

 

[Gingergrrl]

I was under the impression that SCIG was meant for immune deficiency, but my current doctor said he has seen success with it for autoimmune disease done I'm higher doses.

I think the reason that SCIG is more often associated with immune deficiency is b/c SCIG is usually a lower dose (and low dose is usually given for immune deficiency vs. high dose is given for autoimmunity). SCIG vs. IVIG is just the mechanism in which it is administered (subQ vs. intravenous).

How will you get 60g in a week subQ?

This was exactly what I was wondering, too! Please keep us posted @crypt0cu1t about this.

I'll probably have to do it over a couple days.

I think you will have to divide it up over several days if you are doing it SubQ (SCIG). I don't think you will have any other choice (and it will also be safer that way and less side effects).

He explained to me that SCIG is generally much better tolerated than IVIG, which is great because of my past reactions to IVIG (I'm sure you remember).

I definitely remember the horrible experience that you had after IVIG and the best thing you can do is slowing down the infusion speed. So you should tolerate SCIG better b/c it will be slower and (I assume) given in a split-dose over several days.

Also, how soon will you start the CellCept after the SCIG?

 

[Learner1]

now we are sticking with SCIG/Cellcept.

Are you aware of the mitochondrial effects of CellCept, particularly on T cells? You might wish to share this with your doctor and ask for an explanation:

https://pubmed.ncbi.nlm.nih.gov/31918330/

I am doing fine 14 months out from my last Rituximab. My B cells were low for a long time and we were depending on my T cells working to try to defend me from other bad stuff, like COVID. Without functioning B cells and T cells, it might be problematic.

What is the rationale for the CellCept in your case?

 

[crypt0cu1t]

Are you aware of the mitochondrial effects of CellCept, particularly on T cells? You might wish to share this with your doctor and ask for an explanation:

https://pubmed.ncbi.nlm.nih.gov/31918330/

I am doing fine 14 months out from my last Rituximab. My B cells were low for a long time and we were depending on my T cells working to try to defend me from other bad stuff, like COVID. Without functioning B cells and T cells, it might be problematic.

What is the rationale for the CellCept in your case?

The rationale for cellcept in my case is that I may have an issue with T cells as well as B cells., we don't k ow if B cells are the main issue because Plasmapheresis only helped very slightly (if at all) I'm not sure..

I am pretty worried about being immune compromised around covid, but its a risk I'm.willing to take honestly.

 

[Learner1]

The rationale for cellcept in my case is that I may have an issue with T cells as well as B cells., we don't k ow if B cells are the main issue because Plasmapheresis only helped very slightly (if at all) I'm not sure..

I am pretty worried about being immune compromised around covid, but its a risk I'm.willing to take honestly.

I see - that makes sense.

Definitely, you need to do what's right for you. Sounds like you're getting good help. I just read that Regeneron was applying for approval of doing their antibodies as a preventative and COVID antibodies should hit the gammaglobulins supply in the next few months.

It's a pity the FDA yanked thymosin alpha1...

Good luck and keep us posted!

 

[crypt0cu1t]

Wow that's very good news then! Trust me, I'm scared of cellcept honestly and I want to stick with scig for a while before jumping to immune suppression.

I also have a few structural issues that have surfaced that I may need to take care of in the future (Retroflexed Odontoid, Arachnoid Cyst)

I think a combination of things (Proper diet, supplements, treating possible infections, immune therapy and surgery for structural issues will be what does it for me).

 

[crypt0cu1t]

I think the reason that SCIG is more often associated with immune deficiency is b/c SCIG is usually a lower dose (and low dose is usually given for immune deficiency vs. high dose is given for autoimmunity). SCIG vs. IVIG is just the mechanism in which it is administered (subQ vs. intravenous).



This was exactly what I was wondering, too! Please keep us posted @crypt0cu1t about this.



I think you will have to divide it up over several days if you are doing it SubQ (SCIG). I don't think you will have any other choice (and it will also be safer that way and less side effects).



I definitely remember the horrible experience that you had after IVIG and the best thing you can do is slowing down the infusion speed. So you should tolerate SCIG better b/c it will be slower and (I assume) given in a split-dose over several days.

Also, how soon will you start the CellCept after the SCIG?

You're right that SCIG is given in lower doses, but my doctor has said he's seen a lot of success with SCIG (especially in people who don't tolerate IVIG). So I'm trying to remain hopeful!

I'm not sure how long after scig but I want to wait a little while before jumping into it.

 

[Gingergrrl]

You're right that SCIG is given in lower doses, but my doctor has said he's seen a lot of success with SCIG (especially in people who don't tolerate IVIG). So I'm trying to remain hopeful!

Absolutely and I feel very hopeful for you! Once you know how your SCIG will be dosed (meaning how many grams per day to reach the 60 grams weekly), will you post that here? I will definitely be following your thread and am excited for you.

 

[crypt0cu1t]

So I tried going to Yosemite two days ago and I've been paying for it ever since.

I've noticed a huge flare in symptoms (Dry eyes, dry mouth, muscle pain, muscle fatigue, Derealization, blurred vision) I'm really struggling to keep positive while waiting for treatments... I've been doing everything right too, my diet is near perfect.

I just want to feel better again

 

[lenora]

Well, @crypt0cu 1t....I'm wishing you the very best. I'll be particularly interested since I've also had one attack of Autoimmune Encephalitis.

Your odontoid problems are also under the heading of Chiari involvement and I had surgery for Arnold-Chiari Malformation probably 35 yrs. ago. It was successful, but I think old age is adding to my problems. I also have Syringomyelia and Scoliosis...all in the same family. The Chiari surgery did stop the cyst involved with SM.

As I said, I'll be especially interested in your progress. I wish you good health as you travel down this road. Yours, Lenora.

 

[Hoosierfans]

Hey @crypt0cu1t , I’ll definitely be following your journey as it looks like I’ll be venturing into the world of IVIG / SCIG / plasmapheresis / Rituximab soon. I just got back labs (CellTrend) that show very high levels of multiple antibodies to my CNS and vascular system.

I have an appointment with my doctor next week to discuss where we go from here — but it sounds like from @Learner1 its going to involve treating some infections and then hitting my system with IVIG or SCIG or plasmapheresis. I look forward to hearing your journey and sharing mine as well. Here’s to recovery for all of us!!! 👍🏻🙌🏻👍🏻🙌🏻👍🏻🙌🏻

 

[crypt0cu1t]

Hey @crypt0cu1t , I’ll definitely be following your journey as it looks like I’ll be venturing into the world of IVIG / SCIG / plasmapheresis / Rituximab soon. I just got back labs (CellTrend) that show very high levels of multiple antibodies to my CNS and vascular system.

I have an appointment with my doctor next week to discuss where we go from here — but it sounds like from @Learner1 its going to involve treating some infections and then hitting my system with IVIG or SCIG or plasmapheresis. I look forward to hearing your journey and sharing mine as well. Here’s to recovery for all of us!!! 👍🏻🙌🏻👍🏻🙌🏻👍🏻🙌🏻

Thats awesome man! I'm glad you're finding answers! Did you have any traditional antibodies? What are your symptoms?

 

[Hoosierfans]

Thats awesome man! I'm glad you're finding answers! Did you have any traditional antibodies? What are your symptoms?

Lady, here. 😘

So far I am not positive on any “traditional” antibodies EXCEPT for Anti- Hu antibodies. My neurologist was a little weird about the result, so he asked that I be retested (still working on that).

My ANA will pop positive every so often but also switch to negative.

My symptoms are mostly neurological, and pretty severe: very dizzy (all the time), cognitive decline, memory issues (I test at the 5 percent level ouch), skin / nerve burning sensation all over my arms, legs, face and in my brain, balance issues, severe anxiety and depression, akathesia, food intolerances, fainting / POTS / episodes of bradycardia and hypotension.

I passed along the CellTrend antibodies test to my autonomic neurologist, who is “not concerned” and not willing to take the autoimmune component any further. So, I’m hoping my internist will pursue immune therapy for me. 🙂