Persistence Paid Off

[Jmiller623]

Hello fellow loopies. Got my first dose of IVIG for cranial and autonomic neuropathy over the last 2 days. No side effects so far. Not even a headache... I’ll keep my fingers crossed and stay hydrated.

Wondering if anyone has had IVIG for NPSLE? I know some people get it for PID but at a lower dose. How long did it take to notice any difference in your neurological symptoms? My dose was 1000 mg/kg.

I fought for this for over a year now. Really hoping it works. Hope this post finds everyone doing well out there right now! ❤️

For photo buffs, here’s a picture I took of full moon on the beach. Because beach in the sun is no fun for the photosensitive. Call me a vampire. 🧛‍♀️

[misty14]

Do hope this treatment works for you jmiller specially as you've fought so hard for it!. Beautiful, unusual pic too. Keep safe and well. Xx

[KayHimm]

🎈🎈So happy you didn’t have side effects. My neurologist says IVIG is very effective for autonomic neuropathy. I feel positive for you!

😘 k

[Jmiller623 in reply to KayHimm]

So I forgot to take my PM meds tonight. I usually get symptomatic around dinner time which reminds me to take them.

Well... tonight I forgot because symptoms never came on.... I get red as a beet, flushed, Raynauds, heart revved up, nausea. Nothing tonight.

Maybe placebo but I’m thinking not. Thanks for the positive wishes! They worked! 😊

[jetjetjet]

Countess Miller

[Jmiller623 in reply to jetjetjet]

😂😂😂 If only. I’d be a lot richer.

[jetjetjet]

You are rich just being you !!

[Jmiller623 in reply to jetjetjet]

Sir, you just made my day! 🙌

[jetjetjet]

Having smiles along the way . -Spread a little Sunshine everyday .

[svfarmer]

Glad things are going well for you and what a stunning picture x

[CecilyParsley]

Hi there, I have no experience of this so no advice sorry but I really hope it continues to work for you. Your photo is so beautiful xx

[EOLHPC]

😃👏👏👏👏 HURRAH💐💐💐💐💐THANKS for letting us know ❣️+ Gorgeous view...you’re reacting so pos from the outset, OMG 🤞 this keeps agreeing with you... I tend to feel no side effects can be indication it’ll HELP 👍...PLEASE keep us posted...this is one of the V few times I can recall any of us here receiving neuro IVIG treatments, and your medical professionalism brings a whole new dimension of detail & expertise to the feedback you’re offering us re all aspects of your case...I am on the edge of my seat 🤩

Hope you don’t mind if I ask:

Did you have premeds?

If yes, which premeds?

How many hours did your infusions take over those 2 days?

In case you &/or others are interested:

I think you’re in the USA where protocols & regimes may differ from ours under the NHS. The NHS refers to treatments for your type of condition as IV Immunoglobulin G Neuromodulation. here in the UK the IV immunoglobulin G dosage for neuromodulation are 1-2g/kg over 2-5 days depending on the condition. And these treatments tend not to be a periodic, longterm thing

There is a 5 fold diff in dose between NHS PID Immunoglobulin G Replacement Therapy (IGRT) doses & those for neuromodulation. PID IGRT is always long term & the dose varies depending on mode of infusion + type of PID or secondary Antibody Deficiency etc you’re diagnosed with. My type of PID is chronic below normal ref range IgG, IgA & IgM which is called panhypogammaglobulinaemia . The UK IVIG dose is 0.4-0.6g/kg every 3-4 weeks forever....if Infusions are Subcutaneous (SCIG), the dosage is equivalent to IVIG: 100mg/kg/week. The aim is to achieve normal ref range Immunoglobulin G levels...but our trough levels are carefully monitored & dose adjusted accordingly.

🌈🕊💫🍀❤️🍀❤️ Coco

[Jmiller623 in reply to EOLHPC]

So much helpful info coco. Thank you! Last evening, I finally got that wicked headache everyone warns about. But worth it if it works IMO. A few hours of pain is worth regaining nerve function. My IgG was also for real low last checked so I feel like IVIG kills 2 birds with one stone.

I did get premeds. Tylenol and Benadryl. I also take allergy meds on the regular as well. IVIG was run with fluids at 100 ml/hr. They titrated up my drip slowly so the the first day took 4 hrs and second day took 3 since it was a little less than the day before. It has been approved for 3 months and I’ll get it monthly. If it works, will appeal for longer treatment.

My poor husband sat through both of them with me while he fielded work calls. He’s been a gem.

I found another physician who is in a similar boat. She is also getting IVIG at the recommendation of someone from Stanford. Hoping to collaborate and write a case study paper so others can use it as a reference for IVIG approval.

Keep on keeping on. I’ll let y’all know if I revert back to super woman anytime soon.

❤️✌️

[EOLHPC in reply to Jmiller623]

🤩 THANKS❣️ Your husband is one of the Good Guys❣️. Fascinating detail! FANTASTIC you’ve connected with this colleague on same protocol!

My IVIG premeds were oral paracetamol + IV antihistamine & hydrocortisone...had all 3 @ 1st infusion...tried with only paracetamol @ the 2nd & seemed relatively ok aside from some chest pain...but @ 3rd ran into bigger trouble so from then on immunology had me back on full premeds. So far am ok just with paracetamol during SCIG

😬 Feeling tempted to be concerned....but I know you’re well informed...even so, just checking: Is your IgG consistently below normal ref range? If yes, what are your medics saying? Eg Over here the NHS protocol would be urgent referral to immunology for investigations ...meanwhile various specialist blood & urine tests would be run re bone cancers etc, while immunology runs full detailed immunologic blood tests (my results run for pages & pages), also immunology would run vaccine challenges. Over here, Hypogammaglobulinaemia investigations (whether the IgG deficiency is primary or secondary) tends to mean long term Immunoglobulin G Replacement Therapy. 😯 So if the USA hypogammaglobulinaemia protocol is like ours, establishing your deficiency is chronic could maybe support your need for long term IVIG....❤️🍀❤️🍀

[Jmiller623 in reply to EOLHPC]

It’s not always really low, only when I’m not feeling well. It fluctuates but all my markers c3, c4, IgG, IgA, IgM are borderline low like it’d only take a point or two to put me in abnormal threshold. I think I just have a crap immune system that still bellies up the strength to attack my own body.

I’ve brought up the immunodeficiency before because of labs and was referred to immunology. But since I don’t get tons of infections, he said no to IVIG even if my IGs are low. I also have chronic lymphopenia so it makes sense why I have no antibodies. Worst infection I’ve ever had was upper lobe bacterial pneumonia (probably aspiration). ED sent me home with antibiotics. Probably should’ve been admitted. My lymphs then we’re only a mere 200.

Infectious disease runs antibody challenges with pneumonia vaccines and I could look into that. Trying not to waste my wants and asks since I did wind up getting what I thought appropriate.

I took 10 mg of prednisone today to help mitigate inflammation from IVIG. That seemed to help along with around the clock tylenol (same as paracematol). I may ask for hydrocortisone premed next go round. Helps keep fluid in the blood vessels.

[EOLHPC in reply to Jmiller623]

SO SO FASCINATING: of course i love your idea re vacc challenges....& yes: the not wasting asks is CRUCIAL...me: totally seroneg + early onset chronic lymphopenia & below range C4 alongside the below range IgG, A, M...mainly 50 decades of infant onset lupus going inadequately medicated alongside childhood onset complex persistence pattern multisystem infections resulting in what immunology terms “chronic pockets of bacteria-driven sepsis” in sinuses, chest, stomach & urinary tract. 🤷🏼‍♀️😘

PS In case useful: my IVIG premed doses are: 10mg piriton (chlorphenamine) + 100mg hydrocortisone ( 🤨 ml or mg...it’s late here 😆)...and: my migraines reared their heads during the 3 months the bod was first adapting to IVIG, but then they faded...and yes: really keeping max hydration up is still mega important even now am infusing subcutaneously to stay away from infusion ward during COVID

[Jmiller623 in reply to EOLHPC]

Oh man. I swear we’re like twins in so many ways. I am 100% certain my problems started in childhood with strep throat. Never stopped from there. Bad morphea/eczema as a child left me looking like a reverse Dalmatian with white spots all over me. Had chronic UTI in high school/college... should’ve known something was amiss bc I wasn’t sexually active when they started. Then mono and pericarditis during grad school. Got to residency... persistent adenopathy, Raynauds. You’d think I’d buck up and ask for help at this point. Nope.

Pneumonia during residency and then developed Livedo. Asked some colleagues should I see someone. They all said no unless you’re dying. Then came the fatigue, nerve probs, sinus infections and all the good nonspecifics of lupus. And well... you know the story from there.

Lemme tell you... if IVIG works for me, I will fight tooth and nail for its continuance. I am the squeakiest wheel of them all and I will snatch that grease from a hand if need be.

Get some rest and have a wonderful night Coco. Thanks for all the info. It is very useful.

[EOLHPC in reply to Jmiller623]

😆👍🦓🦓❣️🛌zzzzzzzz

[catblue1865]

Don't know what those letters stand for that you have or what helped.

But got diagnosed with severe photosensitivity