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...
Having been on this wonderful med lol for a few years I can tell you that the side effects for me were that I got a few more infections than usual and from time to time some stomache issues , cramping , pain .
It can cause changes in your skin , lumps , and swallowen glands as I was constantly reminded by my neuro that if any of these symptoms came about notify her asap.
Very often Imuran can be dispensed wrongly meaning to much or not enough as its based on your weight. Im 175 lbs and was taking 150 mg daily. Its about 50 mg per 42kg of body weight.
Also and this is super important is to get your blood count checked regularly , your neuro will want to keep an eye on that. Not to scare anyone but I was also told that it can cause serious blood disorders and easy bruising .
Im certainly not an expert but hope this helps in some way..
Cj
I weight 180 and he is going to ramp me up to 150 mg daily. He has blood tests to be done in 6 weeks from today and will monitor me.
When you said more infections than usually, what kind of infections are we talking about? And how many was normal and what is the few more now? lol :)
I appreciate the response a lot. I actually noticed that the prednisone over the last few months has made it easier for me to bruise. Not sure if others notice the same thing or not, but I never ever bruised before I started with the whole MG thing.
How long have you been on pred ? Traditonally but not always etched in stone is bruising as an example is usually more of a long term effect along with " thinning of the skin " which I still have to this day.
We all have our cross to bear and i sometimes contemplate wearing a mask haha like the chinese did during the scars epidemic . seriously you can never be safe .
Cj
I was on imuran (azathioprineand) it dropped my white count dangerously low thus the importance of regular blood work. My Dr told me to call when my fever got above 100. I had a fever over 100 and went to the ER as directed after a phone call to my internist. I had a serious infection and low white count which caused a week long hospital stay. I eventually had to get off of imuran but many just get off of it until their white counts rebound.
Bweeds, what test can I have my doctor run to confirm I don't have the gene variant? I mentioned this to him about bone marrow suppression specifically about something I had heard about methotroxate but didn't know what the test was and he had never heard of it.
You're laughing about sars masks but I already have them. I keep one in my jacket pocket, the car, etc. If someone is hacking anywhere near me I put it on. I actually have a couple and if I cannot seem like a dick, I'll ask them to put one on too.
I agree whole heartedly about people coming to work sick. They want to use their PTO for vacations so they come to work any make everyone sick. That always made me mad before. Now with where my immune system is at, it makes my blood boil.
http://www.ncbi.nlm.nih.gov/books/NBK100661/
If you have any problems with the link or information, let me know. b.
I ask everyone who comes into our house to wash their hands immediately before saying hi. I have hand sanitisers planted throughout the house for the sneezers and nose blowers. Has helped.
Annette
Imuran is used to treat many autoimmune conditions and has been around for a long time (since the 50's). In my 4 years on it I really did not get a cold or even the flu or infection. The studies show that the risk of developing cancer while taking Imuran are very low for treating an autoimmune disease. The only group of patients that had a slightly higher incidence of cancer were those taking Imuran to prevent rejection of a transplanted organ.
Overall it works well for most, start slowly and be sure that you have your blood work checked often as the one issue long term is that your white blood cell counts go too low (leukopenia)
Joe