Sept 2011, respritory crisis given IVIG and mestinon.
Oct 2011, pred 60 mg a day & IVIG every month.
Dec 2011, Symptoms worse and bad side effects from pred.
Rapid Pred, tapper down started.

Jan 2012, Hospital for 1 week for complication of MG and pred. So
Pred stopped.


Just on Mestinon now. Hoping for a chance at Imuran or plex when labs back to normal.

BUT... Stronger than I've been in 6 months right now so pretty happy :)

I was diagnosed in July 2011, take Mestinon every 3 hours. I have an enlarged thymus and seeing surgeons about possibly removing.

J

Diagnosed Jan. 2011 thymectomy Jan. 28, 2011 started on Mestinon 30 mg every four hours. I was able to return to work in May 2011 :) however, by August my Mestinon had been increased to 60 mg every four hours and started on prednisone. In November I was no longer able to perform my job duties due to MG uncontrolled and have been on disability since. I am now on Cellcept in addition to Mestinon 60 mg every four hours, timespan 180 mg at bedtime, 40 mg prednisone daily. Not feeling good at all!

Looking forward to having my normal life back! And staying positive knowing it will in time.

For MG and Small Fiber Neuropathy

Prednisone 20mg daily
CellCept 2,000mg daily
Mestinon 60mg every four hours
Effexor 150mg daily
Baclofen 10mg every eight hours
Alpha Lipoic Acid 600mg daily
Lisinopril 10mg daily
Omeprazole DR 20mg twice daily
Famotidne 20mg twice daily
Robinul 1mg every 8 hours
Tramadol 50mg as needed
Diazapam 5mg as needed
Promethasine 25mg as needed

Completed six months of Cytoxan infusion in February 2012
Five days of Plasma Exchange January-February 2012 (27 total)
Next PLEX will probably be end of April or May 2012

--Kerry

Diagnosed October 2011. MRI shows an enlarged thymus. Started on very low dose Mestinon to watch and adjust for side affects.
15 mg up to 30 mg every 3 hours.
Was hospitalized for kidney stones in Jan. and had trouble bouncing back. Gradually increased.
Now:
60 mg first dose then alternating every 3 hours 30 mg then 45 mg then 30 mg etc.

I have a minor shoulder surgery coming up in April we'll have to see if MG rears its head.

Neuro wants me to get stronger then to do a full sternotomy thymectomy. I am just not sure I can deal with that.
Kimber

Started 60mg mestinon 3x daily 5/13/2011
Started prednisone 20mg 7/2011
Upped mestinon to 120mg 3-4x daily
Attempted to taper prednisone 8/2011 went back to 20mg
Upped prednisone to 30mg 9/2011
Confirmed diagnosis of Myasthenia Gravis
Upped prednisone to 40mg 10/2011
First IVIG 11/11 in preparation for thymectomy
Thymectomy (da Vinci robot) 11/11/11
IVIG every 3-4 weeks. 140 grams (70grams each for 2 days)
Have tapered down prednisone to 15mg daily
Mestinon goes up and down depending on the day.

Waiting for thymectomy to kick in and grateful for IVIG!

Problems with speech - Feb 15th 2005
Screwing around with incempetent docs - March -July, 2005
MG diagnosis - mid-August 2005
Mestinon only - Aug 2005-mid 2006
CellCept (2000mg/day) mid 2006-December2007
prednisone - about 30mg/day early 2007-Dec 2007
Coma 7 days (code blue 30-90 seconds from death)-Dec. 3 2007
Prednisone 80mg/day-Dec 10, 2007 and tapering since
Mestinon discontinued - Dec 10, 2007
Imuran 200mg/day - December 10th - present
Mestinon and symptom-free (almost) for over four years
No thymectomy
Ride my motorcycles as much as possible
End of story

Spring, 2011 Undiagnosed MG Bulbar Symptoms (breathing, swallowing, speaking, holding head up problems)

July, 2011 Dx with possible growth on esophagus.
Prednisone 90 mg

July - Sept, 2011 3 crises ICU Hospitalizations-- Dx ALS, Rx Rilutek

Sept, 2011 Dx Myasthenia Gravis from EMG, SFEMG, +AChr, +MuSK

MEDS:
SINCE SEPT. 2011, I HAVE BEEN ON INCREASING DOSES OF THE SAME MG MEDICATIONS TO THE PRESENT DOSAGES.
MESTINON 600 MG/DAY - I adjust the dosage.
PREDNISONE 60 MG/DAY
CELLCEPT 1000 MG BID, total 2000 MG

I have also had 6 weeks of IVIG 2 days per week, 5 days out of 10 in hospital plasmapheresis (PLEX), and I am currently having 6 more weeks of IVIG, 2 days per week, followed by additional plex.

NOTHING HAS WORKED THUS FAR. I have had 3 days since September, 2011 where I had one day of some temporary improvement.

CONCLUSION: Everyone and every case is different. I am still hopeful for a remission.

Presented with bulbar symptoms 11/11 - 3 days later in resp crisis in ICU. IVIG, Prednisone 60mg, Mestinon 60-120 mg every 4 hours around the clock (3am too - timespan doesn't seem to work for me) --> discharged --> respiratory crisis 2 days later
11/11 PLEX - could breath to walk a few steps again!
1/12 - worsening respiratory - PLEX again - much better!
1/12 - CellCept 2000mg a day
3/12 - worsening respiratory - PLEX again - much better!

No thymoma - but neuro recommends Thymectomy - will try
May get on a regular schedule for PLEX which was also recommended so I don't have to wait to have breathing difficulties before starting it while I am waiting for the cellcept to kick in...

I feel awesome after PLEX - so am doing great right now!

I am on mestinon 60 mg, usually 2-3 times a day. After yday, increased to 1 every 3-1/2 to 4 hours with methylprednisolone 1 daily.
Immuno suppressant was considered but I get sinus infections often so I was afraid to take that route. I realize that we aren't doctors, as far as I know, but I would appreciate suggestions so that I can discuss with my neuro.

jrbyrum -

What are your symptoms? Have you had a thymectomy?

I can't imagine relying on prednisolone as the only treatment if symptoms are severe. It' might be bettr to add the immunosupressant and risk getting sinus infections which can be treated with antibiotics. With MG, it's always about being smarter than the disease and getting in front of it.

Curt

It is not comforting to rely on mestinon and prednisone alone. I am beginning to think that might be the wise choice. Thank you for your suggestion.

Hi JR,

I have been treated just with prednisolone alone and it has been very effective indeed. However, having learned what I have subsequently discovered from others on this site, I think I would have had an even better resolution if I had had at least one course of ivig early on. At least it would have helped me reduce the period of insomnia I had as a side effect of the steroid if I could have gotten away with a lower time on a highish dose.

I suppose it depends on how long you have been on methylprednisone. It can take up to four months to become fully effective so if it is less than that perhaps it is too earl;y to think of ivig. However, if it has been longer than that maybe you could discuss ivig with your neurologist. As I understand it, ivig does not increase your likelyhood of infection as much as the immunnosupressants but someone who has regulary had it would be better at commenting on that.

Gwyn

Gwyn
When I had a crisis a year ago I developed pneumonia. They did IVIG to stop the infection.
Ann

Diagnosed Oct. 2010
AChR positive
fast and fierce onset of symptoms!!!!!
Started mestinon 60 x 4 a day
Prednisone 10 mg eventually upped to 40 mg.
Thymectomy (da Vinci robot) March 2011
Stayed on 40 mg of prednisone for one full year
(got way worse before I got better)
Started Imuran July 2011
Now on 15 mg of prednisone every other day and still tapering
150 mg of Imuran and mestinon as needed
Symptom free.!!!!!!