MG with Thymoma -
 

Hello all members,

This group has been very helpful and informative. I appreciate everyone who spends their time in reading and responding with their knowledge and experiences.

I was diagnosed with MG 10 weeks ago. Subsequently, CT scan confirmed Thymoma. 5 weeks ago, I was given IVIG treatment (not a pleasent experience due to some side effects). Effect of IVIG seem to be positive on MG symptoms. 4 weeks ago Thymus gland was removed which had grown in size.

I was hoping that the removal of Thymoma will cure all MG symptomps. Unfortunately not. I started Mestinone 60mg 2 to 3 times a day. Currently I am taking 4.5 a day. My eye lids, my swallowing seems to be getting better. However, I loose my voice 2 hours after taking a tablet. I also feel very warm and need a fan after 4 hours of taking a tablet. Feel very weak and can't resume my normal activities as I get tired too quickly.

I am starting to take Mestinone 60 mg every 4 hours to see if it helps.

Few questions: Did any one have Thymoma and MG? Did Thymoma removal help?
What is the maximum Number of Mestinone tablets you have taken?

If Mestinone was not effective, did you try any other medicine?

Thanks

Welcome Happy Lady!

Sorry to hear about your MG and thymoma dx - but glad you are well on your way to recovery from your surgery.

I can not speak to most of your questions, but many here can ... and I'm sure will. Mestinon is a funny little drug. Too little doesn't help much - - but too much can make you weaker than none at all. And because MG is so different and unique in the way it affects each individual, it is difficult for any one to speculate on dosages of Mestinon for anyone other than themselves.

Typical side effects of Mestinon are excessive salivation, tearing, stomach / intestinal cramps or upsets, sometimes nauseousness. An overdose can cause marked weakness.

Work with your doctor on dosage based on your reactions. And try drugs.com for more info on side effects and drug interactions. It has quite a comprehensive list.

As for other drugs and treatments, there are folks here who have the kind of first hand experience you seek. In the meantime, welcome and always feel free to ask questions. The forum is full of folks with a great deal of knowledge and empathy!

I had a thymoma also and had surgery in December 2009. Removal is no guarantee of remission. From everything I've read, sometimes people see some improvement within weeks, months, or may be even more than a year. And some folks see no improvement.

At one point I was on both Prednisone and Mestinon. Currently I am on Mestinon 60mg three times a day. It keeps my symptoms at bay and I am leading a pretty normal life. I have double vision flare ups every once in a while (last time was when I was dealing with the stress of my father's death).

You shouldn't mess with your Mestinon dosage without your doctor's approval. Too much can be as bad as too little in some instances.

Hoping things improve for you over the coming months.:hug:

I had my thymectomy a year and a half ago. I was in the hospital for two weeks because I got weak, then had a collapsed lung, etc. I got very sick the following months after surgery- some people do. I was hospitalized 6 times during a 6month time span because I continually was too weak to eat/swallow/breathe on my own. I was put on a ventilator one of the times when I was hospitalized. Without the help of plasmapheresis I would be dead- i think, along with 2 specialists also said this. I am not antibody positive, yet did a thymoma.

Mestinon never worked for me, so i stopped taking it. I take prednisone, imuran and do IVIG monthly. With these three I am able to live a normal life, but it is not easy. Without the IVIG, i know I would be weak 24/7. I am grateful, though, for the effectiveness of IVIG, as plasmapheresis became too dangerous for me.

Im not sure if the thymectomy worked/is working, but i would say it almost killed me directly after the surgery, so be careful.


I tried cellcept, it was very nasty- and the imuran seems to have many less side effects.


If you have questions, lemme kno!

Mestinone was not at all effective for me. It just added an upset stomach. I take prednisone 20-60mg daily only when I am having a flare, about 2-3 weeks at a time. My physicians want me to continue on a maintenance dose of the medication, but I refuse. They don't feel the side-effects or have to worry about the additional organ damage. Prednisone and I have a love/hate relationship.

Best of luck to you. I pray that you can find the answers that you need.

Christel

MG with Thymoma
 

Hello everyone who has concerns for patients with MG and who are currently undergoing the treatment,

I wanted to update my status so that there are more data points available for this rare disease.

Afteter my last post, I had to go to ER due to severe breathing difficulties. At the ER, the staff talked to our regular neurologist, and I was given IVIG for 5 days. The doctor also started Prednisone 60mg a day with 240mg mestinone.

This treatment worked like a magic. With the grace of God, Since August, I feel happier and better everyday. The neurologist (Dr George Spinka at KP, San Diego) has been very careful in reducing dosages. A gradual decrease of Prednisone dose is recommended. Also, we were told that taking Prednisone alternate day reduces the side effects.

Currently, I am taking 35mg Prednisone alternate days and 60 mg mestinone a day. In my last visit with the Neurologist, he drew a plan to reduce a dosage further. I am hopeful to come out of medication soon.

I hope that all of you with MG recover soon as well.

Thank you for your help and wish you thankful Thanksgiving holidays.

Happy_lady

Thanks for the update...and so glad to hear you're doing so much better!! That's terrific!