#ivig

[thechronicsloth]

Looking for Valentine's Day gifts? Is your special someone a geek? Are they into DnD, games, the Sims, photography or chronically ill? Check out my shop and you might just find something cool, funny and romantic! Let me know if there's something you'd like me to change to a design or costumize, so you can give a personalised gift!

[under-same-sky]

🥳🥳

I'm really happy.. feels like an understatement I have been heard And we are investigating my shit immune system!!

🥳🥳

😅For those that want the deets😅

I met with my new Hematologist.

He wanted to go over my ITP history FROM THE BEGINNING! He was shocked how much I had in my head without notes.

I told him what treatments have yielded no platlet responses over the years and how most my drops since 2013 have been immune system triggered or medication triggers (like vaccinations)

He wanted me to take a daily med that stimulates the bone marrow to produce more platlets but these meds have only been out 10 years and were approved as orphan drugs. I have followed these meds the last ten years. I'm not on board with these. MORE SO, I DO NOT have Chronically low numbers. Mine are event drops.

This HOUR long, one on one appointment with him ended with him agreeing that

* I am on top of this

*I manage this condition well

*I can have IVIG infusions when i drop below 20

AND! AND!

since it's tied so to my immune system,

My severe infection history & routine home mitigation, & I respond SO WELL to IVIG w/o roids I am being sent to the immunology department to be checked for IgG Deficiency, CVID & other autoimmune issues. They will follow up with rheumatology should they find anything but both referral sent.

I already have intake appointment with them! I know this isn't likely going to be a fast thing but the possibility of some answers and maybe not end up in the hospital when I get sinus infection or UTI would be really nice.

[cassandralexxx]

I got off the wait list I will be having my infusion tomorrow and Saturday 💪

[u2hearts]

A Jamie update

I have so much to catch you up on, I’m not really sure where to start. I seem to have the UTI’s under control. I’ve made it two months without needing antibiotics. I am talking a prophylactic antibiotic nightly as a precaution. Hopefully I am through the cycle I was living inside. I was also given a round of IVIG therapy to boost my immune system. That is an IV of immunoglobulin. By boosting my…

[mojoflower]

$11k

I had $11,000.00 of medicine (IVIg) in my refrigerator last night. Now, after a 5-hour infusion, it is in my son. This happens every 10 weeks.

I have insurance, of course. And at this point in the year, no matter how high, we've met the deductible. So it is "free" for some definition of the word.

If we were ever to lose our insurance, we could probably keep treating him for a couple or few years before we'd lose our house and all of our savings. We'd be homeless, and he'd be in a wheelchair.

It's a sobering thought.

[jeriaiello]

These two (Nurse Frank & Dr. Marie) have stayed with me next to the recliner since Friday’s infusion—comfort & love. I have a couple days of side effects from IVIG before the benefits begin & our pack will be romping around again. #dogsofinstagram #myastheniagravis #ivig #treatment https://www.instagram.com/p/Co28NMPOqgT/?igshid=NGJjMDIxMWI=

[longhaulerbear]

[From 2018]

Abstract: A patient with severe postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS) received immunotherapy with low-dose naltrexone (LDN) and intravenous immunoglobulin (IVIg) and antibiotic therapy for small intestinal bacterial overgrowth (SIBO). A dramatic and sustained response was documented. The utility of IVIg in autoimmune neuromuscular diseases has been published, but clinical experience with POTS is relatively unknown and has not been reported in MCAS. As a short-acting mu-opioid antagonist, LDN paradoxically increases endorphins which then bind to regulatory T cells which regulate T-lymphocyte and B-lymphocyte production and this reduces cytokine and antibody production. IVIg is emerging as a promising therapy for POTS. Diagnosis and treatment of SIBO in POTS is a new concept and appears to play an important role.

[To] complicate matters, 17 of 48 MCAS symptoms overlap with 33 POTS symptoms which is explained by comorbidity of the syndromes, where 30% of patients with POTS also have MCAS.5 Gastrointestinal (GI) symptoms are common in both syndromes.1–4 6 GI symptoms in MCAS can be explained by inappropriate release of mediators from mast cells (MCs) with KIT mutations whereas GI motility disorders in POTS may be due to active autoimmune muscarinic antibodies causing autonomic imbalance in some patients (S Vernino, personal communication, 2017). Physicians may erroneously attribute these frequent GI symptoms in undiagnosed MCAS and POTS patients to irritable bowel syndrome (IBS) and psychological disturbances as was the case in our patient.

Subsequently, IVIg 1.5 g/kg (Privigen) and 125 mg methylprednisolone were administered monthly. Naltrexone was continued at 1 mg every night. Six days after the first IVIg infusion, syncope, tinnitus, anal outlet disorder and vascular spasm ceased. Capillary refill time was >1 min before IVIg and reduced to <2 s. The next two infusions further improved body pain, weakness, vertigo, ability to eat and facial changes. Subsequent infusions maintained symptomatic improvement but the efficacy did not improve further (figure 2). The platelet counts normalised when measured after the sixth infusion.

After 10 IVIg treatments, a previously scheduled appointment at Mayo Clinic Scottsdale included autonomic testing which showed resolution of tachycardia with head-up tilt along with improvement in sudomotor function. At the time of submission of this report, the patient has had 20 IVIg treatments with a maximum of 5 weeks without one because the effects start to wear off. A trial of mycophenolate mofetil led to immune suppression. The next plan is to add new mast cell therapies in combination with IVIg and LDN.

Antibiotic therapy with rifaximin led to cessation of two decades of significant GI problems in our patient. Huang et al reported that 7/12 patients with POTS had dilated and/or air–fluid levels in the small intestine. We theorise that sustained sympathetic activity suppresses peristalsis, leading to stasis and development of SIBO in some patients with POTS. Alternative explanations for SIBO in POTS or MCAS who have concomitant EDS include presence of droopy small bowel loops or motor dysfunction due to protein deposition. We also theorise that eliminating SIBO can lessen MCAS and subsequent POTS by reducing intestinal permeability, thus reducing MC recruitment as well as T-cell activity and cytokines which activate MC.

In the present case, severe symptoms of MCAS preceded onset of POTS, thus, two driving forces are theorised to be important: mast cell activation adjacent to autonomic nerves and/or persistent recruitment and/or activation of MC due to bacterial overgrowth. It is less likely that an autoimmune neuropathic process is operative.

One common mechanism for high-dose IVIg to work in autoimmune disease is binding the Fc portion of autoantibodies. MC are most commonly known to have IgE receptors, but they also have IgG receptors. When these are activated by IgG, histamine is released. Theoretically, IVIg could overload these receptors and ultimately reduce MC mediator release. IVIg could also bind to histamine and block histamine activation of MC as seen in rats. An additional trigger for MC activation includes T-cell activity and release of microparticles and cytokines. IVIg increases regulatory T-cells which could reduce T-cell activity and thereby reduce MC activity. Finally, IgG has been found to downregulate IgE bound to MC and thus binding IgG by IVIg could play an additional role.

Beneficial effects of LDN on MCAS may include regulating overall T-lymphocyte production and decreasing cytokine mediators from T cells which directly cause MC activation, blocking Toll receptors which stimulate MC activity and reducing neuroinflammatory pain via microglia. Endorphins produced by LDN may improve intestinal dysmotility in POTS by directly increasing the migrating motor complex which prevents small intestinal stasis and subsequent bacterial overgrowth. We theorise that neuropathic POTS with an immune mechanism may also be improved by LDN via reduction of autoimmune antibody production by B-lymphocyte regulation.

Patient’s perspective

After decades of declining health, despite trying every conventional treatment with 100% compliance, I was pretty discouraged. I used to be such a high achiever and now I couldn’t even stand or sit up. I’d seen numerous top specialists and tried everything they recommended. I started seeing doctors for these complaints in 1997, and first received diagnoses of rosacea and restless leg syndrome.

In 2013, I realised Claritin helped, and that led me to figure out I may have POTS and MCAD. I referred myself to Mayo AZ, who confirmed it, and they started treatment with all the many drugs listed above. I was also diagnosed with ‘delayed pressure urticaria /angioedema’, DPU which is a mast cell problem where physical pressure leads to localised pain and swelling for days after. It’s a comically cruel problem to have along with POTS because one keeps you from being upright while the other keeps you from being able to lie down comfortably more than a few minutes … so you writhe on the ground mostly. But I’m grateful I have it because it’s the diagnosis that allowed me to receive IVIg!

I feel like I won the lottery last year by discovering LDN, IVIg and SIBO treatment. LDN made me feel noticeably happier, more energetic, in less pain and with better digestion (and these things got better with each dose increase). IVIg was an absolute miracle and within a week gave me a life back, with a huge improvement of numerous symptoms, most importantly fainting, nerve pain and delayed pressure angioedema. But I still had daily crippling stomach aches and more gas than a field of Holsteins until I took the rifaximin. I can’t believe I went decades feeling so bad when I only needed 2 weeks of antibiotics and a low-sulfur diet! Now I’m back to standing, eating, sleeping, working, living and feeling exceptionally lucky.

Learning points

Patients with postural orthostatic tachycardia syndrome (POTS) and mast cell activation syndrome (MCAS) have a wide array of symptoms and require an open mind to entertain the diagnoses.

POTS can imitate severe gastrointestinal motility disorders, irritable bowel syndrome (IBS), or frequent ‘IBS’ or small intestinal bacterial overgrowth (SIBO) relapses after antibiotic therapy.

Treatments for hyperadrenergic POTS have had limited in efficacy but treatment directed at MCAS can help.

Combined therapy with intravenous immunoglobulin and low-dose naltrexone led to significant improvement in a severely affected patient.

Antibiotic therapy for SIBO contributed to clinical improvement in the case presentation and others in our practice for both GI symptoms and POTS/MCAS symptoms.

[okayimherenowwhat]

I get plasma infusions every month to treat my autoimmune condition. It takes like 800 donations for a bottle, I get 12 bottles over 3 days.

I was just laying in bed and just randomly hit with this realization:

If any of them were homophobic, do I now have internalized homophobia?

[fiberglasscotttoncandy]

Woah, can’t believe I haven’t posted on here in 10 months. Life has gotten weird. My body continues to deteriorate but I’m actually feeling better in some ways. Though I was recently diagnosed with RA.

I moved out of a moldy apartment and was able to come off of half my antihistamines and mast cell stabilizers. I’m finally on IVIG which it took me years to get, and it’s helped with some of my GI symptoms. Found out I have craniocervical instability and possibly also tethered cord and Eagles syndrome, all of which may require surgery along with surgery for Chiari. I’m having a diagnostic surgery next month to find out how bad the CCI is among other things like my intercranial pressure. I’m making progress. But like, I’m also losing the best insurance I’ll probably ever have in my life next April. So I feel like I’m racing against the clock to fit in as much as I can now.

My partner and I have a garden at the church in our old town again. It’s going pretty well and I think we’re finally mastering growing zucchinis. That’s about all I got going for me atm lol. My body may be deteriorating, but at least I can grow a good zucchini 😂

Time is moving so fast and I’m almost 30. I figure I’ll probably have my health and maybe my life in order by 40. Maybe we’ll have a house and a small farm by then. Time really feels like it’s been passing me by lately. I barely see anyone I know because of the pandemic still.

[kghospital]

Guillain Barre Syndrome (GBS) - Best Neurology Hospital in Coimbatore

[aartichede08]

https://www.onlineguider.com/?p=10772

Grifols Enters Agreement With Selagine To Develop Immunoglobulin Eye Drops To Treat Dry Eye Disease

Axiom Market Research & Consulting™ added a report on immunoglobulin market which includes study on product, mode of delivery, application, and geography. Immunoglobulin market was projected to grow at a CAGR of 7.27% for the forecast period 2021 to 2027. The global market is estimated and forecasted in terms of revenue (USD Million) generated by the immunoglobulin market.

To know the scope of our report get a sample on https://www.axiommrc.com/request-for-sample/10580-immunoglobulin-market-report

The factors such as increasing prevalence of the immunodeficiency diseases, along with increase in the adoption of the immunoglobulin propelling the demand for the market and the growing research and development activities for the advanced product innovation has been responsible for boosting the growth of the immunoglobulin market during the forecast period.

MARKET KEY PLAYERS

ADMA Biologics, Inc

Baxter international Inc.

Bayer Healthcare

Bio Products Laboratory

Biotest AG

China Biologics Products, Inc

CSL Ltd.

Evolve Biologics Inc

GigaGen, Inc.

Grifols S.A

Johnson & Johnson (Omrix Biopharmaceuticals, Inc)

Kedrion Biopharma Inc.

LFB group

Octapharma AG

Sanquin Plasma Products B.V.

Shanghai RAAS Blood Products Co., Ltd

Shire (Baxalta)

Takeda Pharmaceutical Company Limited

To Buy Immunoglobulin Market Report https://www.axiommrc.com/buy_now/10580-immunoglobulin-market-report

[under-same-sky]

Oh hi auto immune 🙃

Haven't needed IVIG infusion since 2021, and Haven't visted infusion clinic since 2013.

But here I am 4hrs for 2 days in a row.

Because a head cold knocked my platelets down to 19k.

But I win... because i told the hematologist I refuse steroids. 25yrs yo-yo-ing on the fucking things I have damage from them. They called me and decided IVIG was fair because I respond well and rarely crash like this anymore, and it was virus triggered.

I'm home from day one and I already feel exponentially better. It's wild to me how ivig littlerly is like hulk juice and I feel amazing!

[cassandralexxx]

it’s a good thing my doctor is tapering me off my IVIG frequency bc my veins have NOT been cooperating.

[stardustinmyhands]

My ivig infusion is today. I’m so thankful for my port, my ports name is Tony. Cause I got it the day Tony Bennett died. I was waiting to get called back when I had read he had died

This stuff is a miracle in a bottle. I rarely get sick now cause of my infusions. I’m thankful for my immune doctor who ordered them how I asked, and in such a way insurance wouldn’t deny it. I got my monthly dose increased and I get them more frequently (every two weeks)

The gi doctor nurse called me back and talked to me. She sent a message to the doctor. So I wait for another call back. I figure they will want to do an EGD and maybe a gastric emptying study.

I’m watching YouTube, Lady Gaga of course and doing word searches.

My nausea is mild right now, I got nausea meds on board of course. It hurts whenever I drink or eat. So I’ve decided to eat and drink whatever I want. Cause it hurts no matter what.

I just have to live with the pain. Like how I live with my joint pain. And live with my headaches. It’s just my normal.

[gravity-rainbow]

Seu Jorge - Life Aquatic sound track