Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I was wondering if anyone had had problems with prednisone and kidney problems. The reason I ask is that 2 months ago I was in the hospital for 6 days because of a breathing crisis. While in the hospital I had 5 ivig treatments and was given 80 mg of prednisone a day. During that 6 days the doctor that was caring fo me came in one day and asked me about the level of something from the blood tests dealing with the kidneys. He wanted to know if it was normal for me - how in the heck was I supposed to know. My neuro was out of town so I had the ER doctor that admitted me as my primary doctor (and he would consult with my neuro by phone).
During that 6 days in the hospital I gained 28 pounds. After I came home and got back on my medication for water retention all but 5 pounds came back off. It took about 2 weeks to get it back off. After I left the hospital, the doctor had me continue taking 60 mg of prednisone daily for a month. Now I am taking 40 mg a day.
In the 1 1/2 months since I left the hospital and got most of the weight off I have gained back 23 pounds (7 pounds in the last 5 days alone). I'm still taking my medication for water retention but it doesn't seem to be helping any longer. My face looks like Eddie Murphy's face did in that movie where he was this super heavy professor that made a potion to make him thin. It is so fat that I don't want anyone to see me because I feel like I look like a freak. My neck, shoulders and hands are also getting fatter and fatter. My feet and legs are also swelling.
The reason I wonder about the kidneys is because it doesn't seem like I am going to the bathroom enough for the amount that I am drinking. I would like to know if any of you have had this experience.
I still consider myself a newbie and if it wasn't for the information I get from all of you I would realy be an idiot in regards to mg. I never know what to mention to the doctor or what questions to ask except from what I learn from this group. The doctor is great about answering any questions I have but he doesn't really volunteer any information as to what I should be watching for or what to expect.
I have an appointment to see him on Thursday and don't know what things I should mention to him or what to ask. I have had a drastic increase in the severity of blurry vision, ringing in my ears, mild headaches, sudden need to urinate, excessive salivation, runny nose every time I eat, and when the weakness in my legs is strong I have the feeling that I have to consciously make my self breathe. My breathing problems have also returned. The least amount of exertion causes me to start couphing and have trouble breathing.
Can some of you please advise me as to what I need to tell my neuro and what questions I should ask him? Any help at all is appreciated.
Thank you all.
During that 6 days in the hospital I gained 28 pounds. After I came home and got back on my medication for water retention all but 5 pounds came back off. It took about 2 weeks to get it back off. After I left the hospital, the doctor had me continue taking 60 mg of prednisone daily for a month. Now I am taking 40 mg a day.
In the 1 1/2 months since I left the hospital and got most of the weight off I have gained back 23 pounds (7 pounds in the last 5 days alone). I'm still taking my medication for water retention but it doesn't seem to be helping any longer. My face looks like Eddie Murphy's face did in that movie where he was this super heavy professor that made a potion to make him thin. It is so fat that I don't want anyone to see me because I feel like I look like a freak. My neck, shoulders and hands are also getting fatter and fatter. My feet and legs are also swelling.
The reason I wonder about the kidneys is because it doesn't seem like I am going to the bathroom enough for the amount that I am drinking. I would like to know if any of you have had this experience.
I still consider myself a newbie and if it wasn't for the information I get from all of you I would realy be an idiot in regards to mg. I never know what to mention to the doctor or what questions to ask except from what I learn from this group. The doctor is great about answering any questions I have but he doesn't really volunteer any information as to what I should be watching for or what to expect.
I have an appointment to see him on Thursday and don't know what things I should mention to him or what to ask. I have had a drastic increase in the severity of blurry vision, ringing in my ears, mild headaches, sudden need to urinate, excessive salivation, runny nose every time I eat, and when the weakness in my legs is strong I have the feeling that I have to consciously make my self breathe. My breathing problems have also returned. The least amount of exertion causes me to start couphing and have trouble breathing.
Can some of you please advise me as to what I need to tell my neuro and what questions I should ask him? Any help at all is appreciated.
Thank you all.
First of all, I am glad to hear your kidneys are getting better and he is increasing your cellcept to what you said. That is a normal dosing. I am sorry to hear that he will not be decreasing the Prednisone, but I cannot comment on how you are supposed to wane off of it. I have heard it can be tough to get off of though. I am a bit perplexed by your neuro though in what he is saying in regards to cellcept. The dosage was so low, how could he say it isn't working? Not to mention the length of time on it. It hasn't even been given a chance. As far as I know, you are just NOW getting started on Cellcept officially, and it is a long term immunosuppresant. The absolute best one could hope to see/feel results would be at least a few months, and perhaps anywhere from 9 mos to a couple years! How long have you been taking the cellcept? Did you have IVIG on Prednisone and then cellcept before? Just sayin...
Anyway, I am happy to hear since the mestinon is not working, or perhaps because the disease is progressing, he is setting up the IVIG for you. Get that, and your new regimen should sustain, I am hoping for you. Think positive! No stress...
I want to hear some good news from you.
Best wishes for peace,
TJ
Before I had my first ivig I was only on mestinon. I had taken prednisone for a month and then was off of it for 2 months before I had my crisi and ended up in the hospital in March which is when I got the first round of ivig treatments. When I left the hospital is when he added the cellcept and put me back on the prednisone. The prednisone dosage was 3 20 mg tablets daily for 2 months and then reduced 2 2 20 mg per day.
Thank you for your information. You confirmed what I thought I had read about how long it takes before the cellcept fully starts working.
You are truly a blessing to so many of us with all of the knowledge you share with us. I hope you only the best in beating this horrendous disease.
I cant really comment on the cellcept, but from my experience the prednisone does seem a bit high for a long term solution. I know that there are many views on this, and agree that it is the first form of attack, but there are serious side effects that many on this forum can give input on.
I am being treated by a Professor in Neurology (specialising in Autoimmune diseases and especially MG), well she was already concerned after just two months of being at a level of 40mg Prednisone a day, and we have now managed to get me down to 20 and 15mg on alternate days, with the target being to get off the Prednisone or at least to a maintenance level of 5mg a day or every alternate day.
At this point I am not starting any other immunosuppressant as I seem to be responding well to the prednisone and the reduction of that. I currently take 60mg Mestinon every 4 hours.
I wish you all the best as I know how frustrating this process is, I am still far from
Stable, and have good and bad days, and still am not sure if I am on the right dose of Mestinon etc. BUT it is a heck of a lot better today than it was a month or so ago.
Keep us posted on your progress as we all learn from each other!
Regards
Christo