[sugrkiss]

Hi everyone...I hope this post finds you well and strong. I just saw my Nuero on Friday and we discussed going off the Pred (which I'm doing anyway without him knowing) and switching to Cellcept or Imuran. I do not want to take either of these..and would rather stay on a low dose of Pred (10mg) and use IVIG every couple of months. But I don't have the energy to do moooore research on why I don't want them....how have the side effects been for any of you that have taken them? And how are some of you faring...who like me would rather not drug myself up anymore...I would rather be weak than drugged and sick. Thank you very much!!!

Jessica

[Melisma]

Hello Jessica
My personal experience is that Imuran is very successful in controlling my MG. Having started after diagnosis a few months ago on a high dose of Mestinon, then IVIg when in respiratory crisis, prednisolone and Imuran were added. The pred is being slowly reduced as the Imuran becomes more effective. I take Mestinon now "as needed" which is only when I have more than usual physical activity, either before or after, 15 - 30 mg. I take 100 mg Imuran daily and at the moment 12 1/2 mg pred. The only noticeable side effect I have is weight gain due to pred, and none that I can attribute to Imuran. I take supplementary calcium and vit D to offset bone loss. My neuro says all is going to plan and I will be back to "where I was before" by the end of the year, just on Imuran. So for me it seems to be effective. I will be glad when I'm finally off the pred but for the moment am glad to be on it while it's doing its job as I'm virtually symptom free unless I do more than usual and get very tired (then rest is as good as medicine). Maybe I've just been lucky.
Best wishes
Marian

[dog lover]

Jessica,
I am absolutely where you are as far as preferring tired and weak over drugged up. I too am on pred and am down to 20 every other day. My Neuro is finally ready to get me off of them due to the horrible side effects. I was on cellcept for about 6 weeks and also had horrible side effects from it. My worst side effect was memory loss comparable to demensia. I would be right in the middle of something and completely forget what I was doing, I was forgetting numbers for passwords and codes which I have never had a problem with. It caused a pretty severe depression and my insomnia came back with a vengeance. I literally felt like I wasn't the same person anymore. I saw my neuro last week and he said we need to simplify the meds. I told him I am ALL for that. He stopped the cellcept and lowered my pred. He thinks some of my mental and cognitive issues are pred related but that the cellcept just made them all worse. He asked me if I was suicidal and wanted me to tell him the day, month, year and where I was. He was very concerned with the memory loss and depression. I had taken in a list of my meds so I wouldn't forget anything and he looked at it and asked me why I was on Thorazine. I am not on Thorazine but Trazadone to help me sleep. I told him that is exactly the kind of things I am talking about forgetting or getting wrong that scare me to death. This all happened a week ago and I am already feeling much better. My head is so much clearer and my depression is lessening by the day. I am also going in a little different direction and am using more vitamins and eating more raw fruits, vegs and juices and just an all over healtheir diet. That also has helped alot. My vision is so much better I have been able to read before bed again!!! Oh one other big problem with Imuran and Cellcept is that they put you at a higher risk for some cancers including melanoma. I told my neuro I felt better before they started me on all the meds than I do now. I feel like the drugs were killing me. I think you are VERY wise to think long and hard about adding one of these drugs. I am determined to control my MG as much as possible with diet, exercise, sleep, keeping my stress under control and just taking some time to focus on trying to get my body healthy again. Like I said I feel better already. If you want me to give you more details about what I am doing email me privately and I'll give you the rundown. Take care of yourself and it is nice to see you back on here~~~
Kendra

[DesertFlower]

Originally Posted by sugrkiss

And how are some of you faring...who like me would rather not drug myself up anymore...I would rather be weak than drugged and sick. Thank you very much!!!

Jessica

Jessica,

I am only taking Mestinon for MG, and I am doing relatively good, although I have lots of ups and downs. It took a while, about 5-6 months, to have my MG get to a tolerable level and I am pretty sure it was due to the Mestinon. I am learning to deal with the remaining times of weakness and I prefer this to stronger drugs.
Like Kendra, I have found that a healthier diet with whole foods is helpful if not necessary for me feeling good.
I hope you are doing well.

[Stellatum]

My MG seems to be sort of settling into a pattern. I find if I take the Mestinon wisely--more when I'm busier, etc.--I function pretty well as long as I'm brave enough to use my walker, because upper-body tilting seems to be the most limiting symptom I have. Today I really didn't want to explain to the librarians, who all know me, what's going on, so I left it at home. That's when I discovered that an 11-year-old kid has shoulders at just about the right height to keep me from tilting.

Well, it's probably foolish of me to assume that this is the way it's going to be from now on...who knows what's ahead. Still, I'm able to get out more than I used to. I was talking to my neighbor the other day, who has multiple health problems (she's my age--in her 40's). She said she's too embarassed to use any walking aids, so she just stays home instead. I sort of resolved to not to fall into that habit, though I chickened out today, at the library.

I'm working on it. The other day I brought my canes to church, where there are a lot of people with canes, and felt pretty spry compared to some of them!

Abby