Hi There,
I too have had 2 skin cancers removed due to being on Imuran for five yrs. now. My dr. said that that is what the cause was.

Some scientific information about immunosuppressive drugs (azathioprine, MMF / cellcept, ciclosporine, cyclosphosphamide, methotrexate,....):

All immunosuppresive drugs are also toxic to other tissues in varying degrees. Mostly, it is tried to get a dosage so suppressive effects are additive, but toxic effect is not. Certain side-effect emerge only after patients have taken the drugs for long periods. These include a higher incidence of certain types of malignant disease (carcinomas of the skin and genital tract, lymphoma and Kaposi's sarcoma).

2 things:
- they often say there is only evidence that this is the case for patients with organ transplants, because od the dosage (anyway, thats what 3 different docs told me). However, a normal dosage for MG of MMF (CellCept) for example, is 2 - 3 grams a day, which is exactly the same for transplant recipients.
- most people who start immuunsuppresors do not do this for a short period of time. First of all, you need at least a year to see if it even does something for you (azathioprine), and second the chance of a worsening of wakening up of your MG when you stop immunesupressors is quite high.

But again, there are loads of patients who have no problems, cancers or whatever. But, if you do not really think you need something stronger for you MG, I'd stay with mestinone only!

Hi, I began having MG symtoms in April 2012. It wasn't until July that a neurologist suspected MG and did a blood test. It came back negtative. However, because of my symtoms (eye droop, unable to chew and swallow solid foods and a pronounced slur in my voice) he put me on Mestinon. From April to July I lost over 40 pounds. I went for a second opinion and again went through a blood test that came up negative. This neurolgist also agreed that I had MG and recommended I contact the neuro-muscleur clinic at Johns Hopkins Hospital in Baltimore. It took me 3 months to get an appointment. I am currently under the care of Dr. Daniel Drachman, a pioneer in the treatment of MG. After undergoing a battery of test, it was confirmed I had MG. Dr. Drachman assures me with a change of medicine I can lead a normal life. Taking the Mestinon does give me temporary relief so I can eat and maintain my current weight. I have some good days and some bad days. I am looking forward to this change in medicine and will keep you all informed. I find it helpful to read the comments and input from people who have MG.

If your antibodies were negative, what tests did they do to confirm MG? I started with bad symptoms in April 2012 also, but the eye symptoms started a year earlier. I am still waiting on the musk antibodies and SFEMG tests. I am contemplating about going down to John Hopkins if I do not get a diagnosis at Jefferson hospital in Philly.

I have also lost almost 50 pounds in that time. In fact this is the first week my weight has not dropped. Must be all the good Christmas food.

thanks
kathie

Kathie,

My neurologist is somewhat of an older guy that has a lot of experience. He insists that the most important diagnostic tests for MG are the physical exam and patient history.

MG causes muscles to fatigue and quit working. Then they get better with rest. I'm not sure that anything else has exactly the same presentation as MG.

He insists that I have it based on his exam and the fact that pretty much everything else has been ruled out.

Hi Kathie, Only 90% of those with MG show positive on the blood test. My first two test showed negative because I was in the early stages of the disease. The recent blood test and the nerve test just proved what my neurologist knew all along. Do they have you on ther Mestinon? This does help for a short peroid of time. I take four a day, 60 Mg.. Usually, this will allow me a 15 to 20 minute window to eat properly and maintain my weight. I return to Johns Hopkins on 1/14 and will be put on new medication. I'll let everyone know how it works. You really should give consideration to going to Johns Hopkins Neuromuscluer Clinic for evaluation and treatment. Take care and Happy New Year.:)

I just got the rest of the antibodies back (musk) and they were negative too. My SFEMG is scheduled for June, that is the first opening. They did not put me on mestinon because I am having bouts of irritable bowel, another auto immune disease, I am thinking. Both the bowel and muscle weakness wax and wane together. The weight loss is slowing, and since the cold weather has set in my swallowing and chocking problems have subsided, except for while I sleep. Even my eye does not droop as much. The hip and thigh weakness is pretty constant. I am going to try to wait for the SFEMG at Jefferson. I have a feeling as soon as spring comes the symptoms will worsen again. If so, I think I will take a trip down to John Hopkins. Since the weather turned cold enough to snow, I have felt a lot better. I will keep you posted. Good luck with the new meds.

MG and treatment
 

Hi Cait24 - Sorry it took so long to get back to you and other MG sufferers. I have been prescribed a combination of Prednisone and Imuran. I also take the Mesitnon three times a day. This combination works great. I don't have any of the MG symptoms anymore. I take a blood test every three weeks to monitor the side effects of the drugs. So far, so good. Again, I would recommend Johns Hopkins, Neuromuscular Unit to anyone who has this disease. :)[/I]

Glad you are doing so well. My SFemg was abnormal and gave me the diagnosis of MG. I am on 60 mg mestinon 3 times a day and the slow release 180 mg mestinon at night. I also started 40 mg of pregnisone 2 weeks ago but I do not think I am at a therapeutic level yet. I think they need to up the pregnisone and start a second treatment of cellcept or IVIG. My symptoms are more stable and I have more energy but I lack any physical strength. I just had another fall as well. They are thinking autoimmune Hashimoto's thyroiditis. My thyroid tests came back as high which means I am hypothyroid, they are evaluating me for hypoparathyroid as well since I had a partial thyroidectomy & parathyroidectomy 30 years ago. I have an endocrinologist appointment in 10 days, as well as more blood test and a ct of the thymus schedule. My condition is still in flux. Thanks for checking back and updating us. I am still thinking on John Hopkins.

kathie