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.
That being said, large doses of prednisone can cause a lot of these problems too. It can make you swell up and increase your MG symptoms but that does NOT mean you are okay.
You should call the on-call neuro at your docotrs office now and tell them your symptoms you listed: the swelling and especially the not urinating enough. The increase in the blurry vision and coughing and breathing issues too. Just call. That is what they are there for....
Did the Dr. Mention what about the kidneys was he concerned with ? With me they were very concerned about Calcium and Potassium of which I needed to take supplements.
My first question for the doctor is what the plan is to get you off of the Prednisone. It cant be done all at once but needs to be done in a controlled manner. Hopefully for you is sooner rather than later because the long term effects can be harsh and permanent
My recommendation to to is to keep a daily log on how you are feeling and any of the side effects that you are experiencing
I am interested to see what other feedback you get on this question. I am also on Prednisone (20mg per day) but was on a much higher dose for awhile.
Intersting that you mention a runny nose when u eat, I also have this, first thought it was really strange, but now sort of got used to it, and just make sure that IO have a tissue handy at meal times.....
Side effects are the scary things here, I am busy tapering down on the Prednisone, but now I feel some effects of that, or are they - I am not sure, is it just a weak day, or is it the reduction in Prednisone. Also trying to adjust the Mestinon is a ongoing task.
Good luck andf keep us posted. We all learn from each others experiences.
Regards
Christo
The runny nose while eating is our weak palate muscles not keeping our saliva out of our sinuses. When I'm "peaking" on mestinon I don't notice it, but when I'm running low it's much harder to coordinate the eating and swallowing.
This is also why we have to be aware a aspirative pneumonia, when a piece of food goes back there and lodges in the lungs, getting infected. Try swallowing while tucking your chin in to make sure that passage is closed off.
Good luck! ~Joe
I wish I had better advice to give you, but I have never taken Prednisone, and I am hoping I never will have to. I certainly do/did not want to, nor did my neuor recommend it for me. She did say if my cellcept doesn't continue to help me, at some point, that would be an option. Stay away from stress and anxiety situations. I am not familar with IVIG causing kidney issues, so I am guessing it is the Prednisone. Seems like a high dose to me from what I hear around and on this thread.
Here is info on IVIG, and no mention of Kidney issue except that it is used for kidney transplants..
http://en.wikipedia.org/wiki/Intravenous_immunoglobulin
Get better soon. We're here for you.
TJ
This may be of some help to you: I just got the lab results from my surgery last week, they have found that I have a kidney infection calledpyelonephritis. In addition to a enlarged prostate.
I asked the doctor how I got this and his answer was due to the large dose of prednisone and possibly the other immunosuppressive medications that I am taking. They put me on a regiment of antibiotics (Cipro) for 30 days which seems a little long to me.
Is this the condition your doctor pointed out about your kidneys? If so you made the need to go on some antibiotics.
I copied this from the e-mail from my Dr.. "prednisone keeps your body from producing cortisol, which is something that your kidneys need to function"
Maybe this is a big eye opener that this medical treatment that is supposed to help is really damaging to the body in the long run....
could you please advise me- I went to hospital a few weeks ago not being able to breath and feeling so week.I have all the symptoms of MG but after being in for a week they decided i dont have it -it is fibro(which i was diagnosed with 2 years ago)I do not believe this so i went to another neurologist and hes said it was all in my head.I have asked for another opinion but have to wait 6 weeks -i am nervouse incase the breathing gets bad again it comes on after walking for more than 5 mins
the dr has said come back if you cant handle the breathing
breathing problems are nothing to fool around with especially if you do have MG. unfortunately many of us have gone through a series of misdiagnosis before finally getting a correct diagnosis. This condition is somewhat rare and if you live in a small town they may have never seen this condition before. My recommendation to you is to go to the nearest city with the University hospital or otherwise prominent hospital with a good neurology department, there is a list of hospitals on the myasthenia gravis foundation website and muscular dystrophy Association website. They will know the tests that need to be made to correctly identify MG. I would not wait until you can't breathe to do this.
Unfortunately, he didn't reduce my prednisone. He said that my myasthenic symptoms would get worse at this point if I am weaned off of it at this time since the mestinon and cellcept don't seem to be working for me. He is scheduling me for a second round round of ivig for next week (assuming the insurance approves it). He is going to combine 5 treatments into just 2 treatments and will be doing it as an outpatient in his office.
He is also going to increase my cellcept from 1000 mg per day to 1500 or 2000 per day (I don't know which until I pick up the prescription at the drug store). He does think that he will probably have to switch to something else eventually though because it doesn't seem to be working the way that it should.
He also mentioned the possibility of a thymectomy being done down the road although the ct scan was clear. He said that studies have shown that even at my age (61) patients have seen good results. He said that he would recommend the endoscopic method should it be done. I am a bit skeptical about this though. From what I have read, a thymectomy has not been that effective especially in older patients - that there wasn't a significant difference after the surgery. Can any of you offer any information on this? If it really doesn't make much difference for older people, I don't want to risk going under anesthesia for nothing.