Have you reported these to your doctor?
Generally they will try steroids first, then Ivig. Sounds like you need one or both. Let your doctor know and/or get to the ER.
Breathing can go downhill fast.

IVIG is very expensive to your insurance company, maybe $15,000 and up so each insurance company makes its own determination. Generally your doctor will have to review your insurance company or you will to find out.

Most of the time, IVIG is given when a person is in crisis or near it -immediate help when life is threatened to give time for a slower acting immune suppression type drug to become effective.

Some folks cannot tolerate prednisone or other drugs or they don't work and IVIG does, so they take it for longer periods of time.

Here is one insurance company criteria

25) Myasthenic exacerbation41,47,50,56,72,122,125
NOTE: Evidence does not support the use of immune globulin maintenance therapy for
generalized myasthenia gravis or for ocular myasthenia.
Additional information to support medical necessity review where applicable:
Immune globulin is medically necessary for the treatment of myasthenic exacerbation
when all of the following criteria are met:
A. Diagnosis of generalized myasthenia gravis
AND
B. Evidence of myasthenic exacerbation, defined by one of the following symptoms
in the last month:
1. Difficulty swallowing
2. Acute respiratory failure
3. Major functional disability responsible for the discontinuation of physical
activity
AND
C. One of the following:
1. History of failure, contraindication, or intolerance to immunomodulator
therapy (e.g., azathioprine, mycophenolate mofetil, cyclosporine) for longterm
management of myasthenia gravis.
2. Currently receiving immunomodulator therapy (e.g., azathioprine,
mycophenolate mofetil, cyclosporine) for long-term management of
myasthenia gravis.
AND
D. IVIG dose does not exceed 2,000 mg/kg per month given over 2 to 5 days
administered in up to three monthly infusions. Dosing interval may need to be
adjusted in patients with severe comorbidities.

Good Luck
Russ

Russ explained it very well. I have United Healthcare, and although they have been great to work with, they changed their policy this past February, and no longer give IVIG for maintenance of MG. It is only approved for a crisis. I was hospitalized twice with breathing problems, so they approved IVIG for several months, but we will have to show pulmonary tests to be able to continue it.

Just a note, I noticed my own breathing problems long before they ever showed up on a test. Although my breathing diminished, it was still within the medical "normal" range. It wasn't until I had partial lung collapse that anyone took it seriously. I learned that due to insurance, doctors have to be guided by the medical tests and what is considered normal in order to treat us. They can no longer take your word for a problem.

Hope you get some help soon.
Steve

Thank you all for the input. The breathing and swallowing difficulties are a daily problem. I see an MG doctor on the 17th and I am trying to wait until then to start steroids. The neuro I see currently only wants to put me on a 7 day course of prednisone as a rescue option.
The weakness started 3 years ago but the swallowing and eye symptoms have been worse the past 2 months. I monitor my NIF for breathing and I'm short of breath, but hanging in there. I'm on 120 of mestinon every 4 hours right now.

Delaying treatment is not a good option if you are having difficulties. We are always a cold or infection away from the intensive care unit when MG is uncontrolled. Mestinon won't stop the destruction of our muscle receptors that is ongoing in MG, so at some point too many are gone and we need a machine to breath.

Prednisone for 7 days is unlikely to be a "rescue option" for MG.

However, it may be worth a try anyway. The 7-day window is because longer treatment shuts the adrenal glands down and makes stopping prednisone a slow tapering process to get them to start up again. (prednisone substitutes for the cortisol made in the adrenals so they take a break from production).

The estimates I have read are that some improvement with high doses may be seen in as little as 2 weeks, but more generally 2 months - 6 months and even a year are common, as well as some folks not getting improvement at all, or not able to tolerate it.

7 days may stop the bad antibody production for a time, let you see if prednisone is tolerable, and may give you some symptom relief. I think it may be better than waiting. That said, I have never heard of a neurologist who treats MG to suggest this way of treatment.

You should ask the neuro exactly what the 7 days will accomplish? And why not longer? Sounds like someone who is not sure what to do.

Mestinon only with progressing symptoms is surely not a safe MG treatment.

Hope you get this figured out
Good Luck
Russ

IVIG will help . I receive IVIG every month.

The neuro that suggested the 7 day rescue is not a MG specialist. That's why I was waiting to talk to the MG doc on July 17th. My voice is hoarse and trouble swallowing pills, but not as bad as my last hospitalization a month ago. I do not trust this local neuro to come up with a long term plan.
Thank you for all the information. I am afraid of the side effects of prednisone but want a more normal life.

My neuro recommended an IVIG infusion when improvement in my symptoms plateaued at about 75% of baseline. I had three days of IVIG, 60G per day, and felt better for about three weeks. He then scheduled me for six IVIG treatments, two days at 40G per day at three week intervals. I finished the first of the six two day treatments today. I have been on CellCept for only three months. He is trying to give the CellCept time. He wants six months before he evaluates the CellCept useage. I am taking 40MG Predisone, 360MG Mestinon, and 2500MG CellCept daily.

Hi. I've been on IVIG for 3 months now. I had didn't he a crisis in the hospital just a hard time functioning at work and home. I was on Cellcept and switched to Imuran. United Healthcare approved me till September every 3 weeks. It depends a lot on how the infusion company and dr office submits it into the insurance