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Old 05-26-2011, 07:18 PM
Graced Graced is offline
Junior Member
 
Join Date: Apr 2011
Location: Maine
Posts: 12
10 yr Member
Graced Graced is offline
Junior Member
 
Join Date: Apr 2011
Location: Maine
Posts: 12
10 yr Member
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Quote:
Originally Posted by camsgrams View Post
My husband was diagnosed sept 2008... we are very thankful that his symptoms are limited to his eyes....he was doing pretty good until dr tried to wean him off his prednisone...ended up back at square one. He is now on 15mg prednisone 3000 mg cellcept and 60 mg mestinon 4xs a day. the big change was when they took him off the prednisone...i would love to see what would happen if they tried upping his prednisone. cellcept has not seemed to help at all . he was on azathioprine and had good results but had a reaction to it so had to stop...
Hi,

Am pleased to receive a response from you. I started on 20 mg of predisone 9/8/10 a day. My neck was losing strength. That dosage worked well for about 3 weeks. I started on 30 mg of prednisone on 10/10/10. All I was taking at this point was the predisone and three 60 mg pills of generic for Mestinon. My Dr. wanted to put me on something like Cellcept and I didn't want to do it. So he put me on 40 mg of prednisone on 10/20/10, That was bad. I was like in a fog. I heard what everybody said etc. but it was like they were a mile away and I was slow thinking. I was/am working full time and that wasn't working very well for me. So I agreed to take Cellcept (1000 mg a day) and started that on 11/6/10. I cut back to 30 mg of Prednisone on 11/16/10. My neck got better fairly shortly and I've been on 30 mg of Prednisone ever since. Tried to cut back on the prednisone to 20 mg on 12/28/10 and by 1/6/11 deeloped double vision. So I increased Prednisone back to 30 mg and my eyes got better. On 1/25/11 Dr. increased my generic for Cellcept from 1000 mg/day to 2000/day. I have had problems with double vision and light sensitivity and one eye is droopy for quite awhile now. But my neck is strong and my Neuro said that is a sign the Cellcept is working. He also said eyes are the most difficult problem to resolve in MG. I was doing so well in March my Neuro would have tried decreasing the prednisone again but I had a colonoscopy scheduled in May and it seemed whenever we decreased Predisone I developed problems and I wanted to get the colonoscopy done before I tried that again. My last appt in May I was having swallowing issues again and a new symptom--lips wouldn't work well when I brushed my teeth and tried to spit. So he didn't want to decrease the predisone now. Said we would try to do that this fall and allow the Cellcept more time in my system. Something I have just started noticing is I'm bruising now. When I just took my blood pressure day before yesterday--where the cuff was on my wrist I have a nice bruise. Before that it was just very small bruises where I might have have a little pressure placed there. I am going to go on my MG sites and ask others if they've experienced this. I am wondering if it's the prednisone, the cellcept or a combination of both. I suspect it's because the Cellcept is starting to kick in better now. I started on the generic for Cellcept Nov. 2010. It can take a year before you see results from that. I had had my colonoscopy cancelled once because I got sick and had double vision so bad I was out of work for a week the end of Jan 2011. I think I was stressed about having to cancel this May colonoscopy and that perhaps was why my symptoms started to mildly come back and I even developed the mild lip stiffness. Since I just had the colonoscopy this week I can already see some improvement in everything. Stress and fatigue play with how we feel. I haven't felt really peppy for awhile but I intend to respond to Julia who I promised I would start at the beginning of my diagnosis and the meds I started on and my history of meds etc. up until now. I hope to do that over this holiday when I have some extra time to tackle it. I did it once and didn't know what I was doing on this site-and lost everything before it got out to people. I won't be leaving in the middle of creating it for a long time again! I felt so bad. But I am going to do it. With MG you can feel good today--and tomorrow be put out of work you're feeling so bad...

All I can say is--15 mg of prednisone wouldn't work for me! For me that would almost be like a maintenance dosage while the Cellcept kept increasing in its good effect on my body. I know my Dr. is VERY eager to get me down off my 30 mg of predisone and I won't be on that one day longer than I seem to need to be. I have about all the side effects of prednisone and I hate it--but I do really like being able to hold my head up normally. Life is so much better so I tolerate what I hate about prednisone. It's a shame it can take so long for meds like Cellcept to kick in. A year is a long time to waste on something that isn't going to work on you specifically. What works great for one of us may not be effective at all on somebody else. I would ask the Dr. if he thought increasing the prednisone might helpyour husband. Can't hurt to ask and have him explain why he feels the way he does. I wish you both the best! Take care...

Grace (Hope this goes successfully!)
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