User:

Levitas

74 y.o. male living in southern England. Diagnosed mild occular MG September 1994, controlled by Mestinon ....... Relapse Dec. '97. Azathioprine allergy caused Myasthenic crisis ....... Steroid induced cataract removed August 1999. By this time I was asymptomatic and reducing steroids and by Feb 2001 was off steroids completely. Cyclosporin alone (no steroids, no Mestinon) worked until - ....... Relapse Nov.'04 when bulbar symptoms developed. Now on Mestinon, steroids (reducing), Mycophenolate and two courses of IVIg ....... Update May 2006. Third course of IVIg in March and after a year on Mycophenolate have had to agree this has not worked for me and have been put back on Cyclosporin at a higher dose that before. This caused very high blood pressure and dosage reduced back to the previous level. Steroids not reduced below 20mg alternate days but life tolerable and much improved on six months ago. ...... Update 4 July 06. Fourth course of IVIg in June and feeling fine! Cyclosporin causing BP problems and medication for BP changed because of this. ...... Update 26 October 2006 Cyclosporin seems to be working. No need for more IVIg. Prednisolone reduced to 17.5mg alternate days, then 15mg as of now and intending to reduce by 2.5mg every month. Had cataract removed from second eye two days ago. No problems. ...... Update 9 January 2007 Down to 10mg from mid December. Nephrologist concerned about me taking 40mg Simvastatin with the Cyclosporin. Apparently the two do not go well together. Statin reduced to 10mg and Cyclosporine down from 100+100mg to 100 morning + 75mg at night. ...... Update August 2007 Reduction in Cyclosporine caused symptoms to return so steroids increased. Now on 20mg one day, 5mg next and reasonably stabilised. ...... Update March 2008 Feeling better than anytime in last 3 1/2 years! Have since been on 20mg (alternate days) having dropped the 5mg dose. Neuro told me in late January it is time to start reducing again but I say I would like to be off Mestinon first. Nearly two months on and I find I need very little. Perhaps drop to 15mg pred. very soon. ...... Update October 2008 Tried dropping from 20mg to 15mg but this was too quick. Now reducing by 1mg every month and will be on 14mg next month...... Update January 2010 Well I managed to get down to 12mg in January 2009 then was told to reduce Cyclosporin to 75mg bid - this resulted in return of bulbar symptoms and I needed to increase prednisolone back to 17.5mg. Now reducing by 1mg every month and down to 10mg target. So far so good and not needing Mestinon. Neurologist advises to stay on 10mg alternate days (ie no further reductions).