IVIG treatments and staying up-to-date with vaccinations

I am on the same gamma gloulin as in IVIG, but I infuse myself weekly with an subcutaneous pump and needle seta. I have been on Hizentra for 8 years with no side effects, rxcept my health improved. The diseases associated with your daughter'santibodies are horrific. I had to look up her problem, and if I were her mom, I wouldnot delay treatment, Hizentra is the best gamma globulin, and weekly infusions maintain a more even titer of protection, because IVIG tends to be low the last week of the four week schedule. Please go to google and see how damagng any flare could be for your daughter. Her issues are serious. All the best for her tharapy and healing.

My 71 yr. old husband started IVIG infusion the end of July for CIDP which we're not 100% sure he has. We took the treatment because if he has CIDP the lack of treatment would result in terrible nerve damage. Now we are seeing another neurologist, a specialist in treating CIDP, who recommends we go 6 weeks instead of 4 week for treatments and see what happens. If he doesn't have CIDP, he should be Ok. If he does have CIPD, he should feel worse. I hope this helps and wish you and your daughter all the best.

I take monthly IVIG treatments for Autoimmune Encephalitis.
Have no bad side effects from it except when I get the bill for it!!!!

Will wait for a week or so after I take my dose to get my Covid booster & flu shoot.

If it helps you to make an informed decision, I developed sensory and motor peripheral neuropathy after the Covid vaccines. My neurological symptoms started within 2 weeks. My ANA titer peaked at the same time my neurological symptoms peaked. I had never had problems with autoimmunity before. There are 4300 other patients like me in a Facebook group for those with neurological injuries due to the vaccines. After my extensive research prompted by my vaccine reaction, I believe your doctor's suspicion that your daughter could have a vaccine injury is highly credible.

Can you share name of Facebook site?

I belong to the same grouo and was severely vaccie injured, now 21 months ago. I have old and new autommune problems, am bedridden, super high ANA titers, and probably EPV viral fatigue on top of multile autoimmune fatigue. I was doing well, living independently, and running a business before the Moderna 1 vaccine. The name of te facebook group is Neuro V LongHaulers. Join Fb, and fil in search bar at top left of page with group name. All the best for daughter;s healing.

Neuro V Long-Haulers

@lisabethy I’m so sorry not hear about your daughter’s diagnosis of MOGAD. I, too, have an autoimmune
Disease which caused lesions and some demyelinating of my brain.
Here is an article i found on Google Scholar that may answer some of your question:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8922017/

You may also want to visit the Genetic and Rare Diseases Information Center which is part of the National Institutes of Health. There may be someone who can answer your question.
https://rarediseases.info.nih.gov/

RE: IVIG: I don’t see your dtr’s diagnosis? Or if there are various treatments available? However, I did have 2 bottles of IVIG in the hospital for ITP (Immune Idiopathic Thrombocytopenia) plus prednisone, as a hospital inpatient in 2008. I’ve been told afterwards, that with IVIG infusions, you need to drink a lot of fluids & it needs to be infused very slowly to prevent kidney damage. By 2010 I was diagnosed with Chronic Kidney Disease, with creatinine rising in 2009, and my nephrologist does not know the cause & said it usually comes with hypertension or diabetes which I don’t have. Dr also ruled out immune kidney by lab test. But Dr did say that in “very rare cases, IVIG can affect the kidney & may result in CKD.” Also, that my ITP x4 episodes, is very inflammatory on the body, but it’s been in remission; so who knows cause of my CKD3. So my story conclusion on IVIG, is just to make sure that the IVIG is administered properly, how much fluid intake; to avoid any possibility of rare kidney side effect from it. (I see many people had IVIG & they don’t mention kidney issue, so I may be a rare case if IVIG affected my kidneys at all). Just something to ask your dtr’s Dr.

The diagnosis is MOGAD. It can be monophasic, so it's not always necessary to stay on a preventative. But especially with a 1000:1 titer, I would. High MOG titres do correlate with disease severity. There's a treatment that makes MOG antibodies go away that works in mice. It "should" be available soon. "A noninflammatory mRNA vaccine for treatment of experimental autoimmune encephalomyelitis".

How's your daughter doing?