Starting IVIG In December

Messages
36
Likes
69
Everything. I have rach antibodies. my symptoms are mainly cognitive (light bothers me, mental fog, derealization, slow thinking ...), all due to an implant operation. I also have fatigue, dry eyes, but nothing compares to my cognitive problems. I got sick two years ago, very bad, it was difficult even to maintain a simple conversation, then I got better with immunoglobulins (0.5 g / kg every 15 days). Now they have been taken from me and want me to try rituximab. I have improved a lot in energy, but my cognitive problems are still bad (although better) and I also have severe tinnitus.
 
Messages
36
Likes
69
one last question (only if your health allows it) did plaquenil help you congnitively? I have read that you also have tinnitus. Did that improve? Immunoglobulins helped me a lot, but they no longer want to give them to me due to shortages due to Covid. Now they want to try riruximab. It scares me because I have frequent reactivations of HSV-1. Thanks for sharing your story 🙏
 

crypt0cu1t

IG: @crypt0cu1t
Messages
584
Likes
1,542
Location
California
Everything. I have rach antibodies. my symptoms are mainly cognitive (light bothers me, mental fog, derealization, slow thinking ...), all due to an implant operation. I also have fatigue, dry eyes, but nothing compares to my cognitive problems. I got sick two years ago, very bad, it was difficult even to maintain a simple conversation, then I got better with immunoglobulins (0.5 g / kg every 15 days). Now they have been taken from me and want me to try rituximab. I have improved a lot in energy, but my cognitive problems are still bad (although better) and I also have severe tinnitus.
Wow that is extremely similar to me, do you have Facebook or something that we could talk easier on? I’m not on PR much anymore
 

crypt0cu1t

IG: @crypt0cu1t
Messages
584
Likes
1,542
Location
California
one last question (only if your health allows it) did plaquenil help you congnitively? I have read that you also have tinnitus. Did that improve? Immunoglobulins helped me a lot, but they no longer want to give them to me due to shortages due to Covid. Now they want to try riruximab. It scares me because I have frequent reactivations of HSV-1. Thanks for sharing your story 🙏
I don’t think I was on plaquenil long enough to feel a difference. How long did ivig take to notice a difference?
Do you have a diagnosis of AE? How high were your gAChR antibodies?
 

Learner1

Senior Member
Messages
6,010
Likes
10,964
Location
Pacific Northwest
one last question (only if your health allows it) did plaquenil help you congnitively? I have read that you also have tinnitus. Did that improve? Immunoglobulins helped me a lot, but they no longer want to give them to me due to shortages due to Covid. Now they want to try riruximab. It scares me because I have frequent reactivations of HSV-1. Thanks for sharing your story 🙏
I have been on IVIG due to both immunodeficiency and autoimmunity. I also did Rituximab for 9 months, but discontinued it due to the COVID pandemic.

My doctor is experienced with dysfunctional immune systems and has has success with carefully selected patients doing Rituximab. As far as I'm aware, he only prescribes Rituximab AFTER patients have been on IVIG for over 12 months AND treats and rules out any infections. If one removes B cells which can help fight infections, it could be dangerous as the body might not be able to fight. He was very concerned about the possibility of my catching COVID before my B cells grew back.

It sounds like your doctors may not be doing the best thing for you... It would be wise to question them very carefully before proceeding.

@crypt0cu1t Hopefully, IVIG will be helpful for you this time. I hope your doctor is prescribing support meds with it, like diphenhydramine, ketorolac, SoluMedrol and maybe lorazepam (as a mast cell stabilizer? I also use boswellia and curcumin fir brain swelling.
 

crypt0cu1t

IG: @crypt0cu1t
Messages
584
Likes
1,542
Location
California
I have been on IVIG due to both immunodeficiency and autoimmunity. I also did Rituximab for 9 months, but discontinued it due to the COVID pandemic.

My doctor is experienced with dysfunctional immune systems and has has success with carefully selected patients doing Rituximab. As far as I'm aware, he only prescribes Rituximab AFTER patients have been on IVIG for over 12 months AND treats and rules out any infections. If one removes B cells which can help fight infections, it could be dangerous as the body might not be able to fight. He was very concerned about the possibility of my catching COVID before my B cells grew back.

It sounds like your doctors may not be doing the best thing for you... It would be wise to question them very carefully before proceeding.

@crypt0cu1t Hopefully, IVIG will be helpful for you this time. I hope your doctor is prescribing support meds with it, like diphenhydramine, ketorolac, SoluMedrol and maybe lorazepam (as a mast cell stabilizer? I also use boswellia and curcumin fir brain swelling.
As far as I know I’ll be getting Benadryl, IV Saline and solumedrol.

I really hope this helps, my brain is so bad.
 
Messages
36
Likes
69
I don’t think I was on plaquenil long enough to feel a difference. How long did ivig take to notice a difference?
Do you have a diagnosis of AE? How high were your gAChR antibodies?
my achr antibodies are very high. I have not been diagnosed with E.A. because they don't know the disease. I was treated with IVIG for autoimmune dysautonomia. I noticed improvement from the second infusion. It was important to slow down. In the first I reacted with blisters in my mouth and hands (similar to herpes), but the benefit of IVIG was much greater, I went from almost not being able to get out of bed, eat (due to weakness) or think, to have enough autonomy in even go out some days. I have been receiving them for 6 months.
 

Attachments

Messages
36
Likes
69
I have been on IVIG due to both immunodeficiency and autoimmunity. I also did Rituximab for 9 months, but discontinued it due to the COVID pandemic.

My doctor is experienced with dysfunctional immune systems and has has success with carefully selected patients doing Rituximab. As far as I'm aware, he only prescribes Rituximab AFTER patients have been on IVIG for over 12 months AND treats and rules out any infections. If one removes B cells which can help fight infections, it could be dangerous as the body might not be able to fight. He was very concerned about the possibility of my catching COVID before my B cells grew back.

It sounds like your doctors may not be doing the best thing for you... It would be wise to question them very carefully before proceeding.

@crypt0cu1t Hopefully, IVIG will be helpful for you this time. I hope your doctor is prescribing support meds with it, like diphenhydramine, ketorolac, SoluMedrol and maybe lorazepam (as a mast cell stabilizer? I also use boswellia and curcumin fir brain swelling.
thanks for the information, I have doctors willing to help but little informed about the disease. Did rituximab help you? Funny what you say about lorazepam. I took Orfidal and it helped me with my tinnitus and cognitive problems, but I quit out of fear. maybe it helped me stabilize mast cells.
 

Learner1

Senior Member
Messages
6,010
Likes
10,964
Location
Pacific Northwest
thanks for the information, I have doctors willing to help but little informed about the disease. Did rituximab help you?
IVIG and Rituximab are not treatments for ME/CFS, For which there are no approved treatments. However, it can be to our advantage for doctors to diagnose other things like immunodeficiency or autoimmunity for which IVIG and Rituximab are treatments. I have had both immunodeficiency and autoimmunity. IVIG is an ongoing treatment for me due to my ongoing immunodeficiency, and the rituximab greatly minimized my autoimmunity so that I take fewer drugs overall.


Why are your doctors prescribing these things?
Funny what you say about lorazepam. I took Orfidal and it helped me with my tinnitus and cognitive problems, but I quit out of fear. maybe it helped me stabilize mast cells.
yes, it does act as a mast cell stabilizer. I only get it with IVIG every 3 weeks. Daily use can lead to a lot of unpleasant symptoms. There are many other mast cell stabilizers, like quercetin, cromolyn sodium, etc that are appropriate for daily use
 
Messages
36
Likes
69
@Learner1 They give it to me for autoimmunity. I have anti rach antibodies and a mild 1: 200 ANA. IVIG helped me a lot. I have lymphocytopenia and am prone to reactivations of herpes virus. They don't care about it and want to give me rituximab, but it worries me. Do you have cognitive symptoms? That improved with rituximab?
 

Learner1

Senior Member
Messages
6,010
Likes
10,964
Location
Pacific Northwest
As far as I know I’ll be getting Benadryl, IV Saline and solumedrol.

I really hope this helps, my brain is so bad.
I usually get 500ml saline after the infusion but it can be given before.

I have gotten between 1-2g SoluMedrol per kg body weight. The next day, I take dexamethasone in 1.5mg pills, every 4-6 hours, then every 8hrs the next day

I get 50mg Benadryl IV before the infusion, then 37-50mg every 2-3 hours during the infusion and 25-50mg every 3-4 hours for the next 2 days

I get IV ketorolac, an NSAID, for brain swelling before the infusion then 500mg naproxen as needed for the next 2 days (though because NSAIDS can affect microbiome health, I try 1-2g of designs for Health CurcumEvail and 1g Thorne Boswellia instead)

I get 2g IV lorazepam prior to the infusion to stabilize mast cells, and never any other time. This knocks me out for about 3 hours.

Given your previous experience, having further interventions similar to these to reduce brain swelling might be wise.

I went to the ER twice early on, due to screaming headache and stiff neck and was given IV dexamethasone, Toradol, and Benadryl both times, so I learned to head it off at home with the above drugs.

Its a lot, but I've been doing this for 4 years now, and it's a routine.