so many question
 

should all MG patiences be on so dosage of predisone?

How much do you take? :confused:

Hi AD404!
 

First of, let me say Welcome to neurotalk! It is a GREAT site to meet other's with MG - and let me tell you, it is the greatest bunch of people I have ever come across!:D

Now, as for your question about Pred. It really depend on the person. There are people who get along fine with just Mestinon, and others (like me) who NEED pred in order to live a "normal" life...........I am so thankful for the pred - it has truly worked wonders for me - hate the side effects!

Now, if you have the time, please let us know a little about yourself! When were you dx'ed, what your symptoms were, etc......

Take care!
Erin:D

Hi,

I haven't taken pred by choice, but I had a thymectomy and take mestinon. How are you doing and what meds do you take? Take care.

Pat

Hi AD 404
I fluctuate between 10 & 40 mg, I try to stay as low as possible, I can't seem to get below the 10 mark. I run into trouble with my eyes, Muscle weakness, fatigue. Love hate relationship ! LOL.....
Nice to meet you !
Mary

I have only been on Prednisone 2 times. I took it for one week before my thymectomy to help control the symptoms. Then about 3 months after that my eye got really drooped and I took it again for one week. I only took 8mg a day for one week each time I had it prescribed.

So far, all I take is Mestinon - but I am newly diagnosed. My follow up appointment is next month, so perhaps there will be discussion on prednisone. They were quick to point out that Mestinon does not cure - it just controls. The dosage and the effectiveness is different between people and even for the same person on different days!

My impression was that prednisone is an attempt to 're-set' the immune system in the hopes of remission, but I don't know that for a fact. (Bet more experienced folks can tell us!)

I think the decision to take or be prescribed prednisone depends on a lot of factors. I know that for me, my neuro. is only currently prescribing Mestinon and plasma exchanges as well as IViG. She hasn't attempted to prescribed prednisone for me. May be because my symptoms are mainly bulbar (weak face, slurred/nasal speech (with no ocular symptoms, oddly)). Also, mine is pretty severe (I have a thymoma, so that might be why, not sure though). I read a lot of things that indicated that prednisone can temporarilly make the symptoms worse, so she might be worried that I'll stop breathing or something. My immune system is also a bit on the weaker side when it comes to the things it's supposed to be destroying! All in all, I'm pretty relieved at the moment that I'm not taking it. My dad has been taking it for dermatomyositis for 12-years. He has osteoporosis and a number of other problems due to the pred.. On the other hand, pros and cons must always be weighed. Taking prednizone might be really helpful for a short time and might keep the symptoms at bay for a long time.

If your symptoms are limited to your eyes (ptosis/double vision), I've read that it's common for only mestinon to be prescribed.

All in all, I think docs. try to avoid prescribing it if they can get away with that (i.e. the patient will do okay without it). I've had arthritis for quite a few years as well. It's not severe, but it can be pretty painful. My rheumy has never suggested taking prednisone for it, even though it's autoimmune.

P.S. Sorry for the long post! lol

Thank you
 

it is my sister who has the MG I know that she is on Mestinon and goes for treatments . Right now she is battling with insurance company . I really want her to join your group of wonderful people. God bless you all . I think you are all amazing people

Hi AD404!
 

Hello again! You are truly wonderful sibling to be so involved with your sis! I hope she decides to join this site!

Big hugs!
Erin:D

I agree with Erin and hope she decides to join us but remember as a family member this is a great site for YOU as well, here you will learn what your sister is feeling and how to help her cope as well as a place for you to learn and understand your own feelings.

Your sister is very lucky to have a family member willing to get educated about her disease. That will help her more than you can know!

I have taken prednisone with no result. Immuran helped me more, it seemed. It will depend on several factors for your sister, best evaluated by her doctor - as long as the doctor is experienced in MG! Sometimes the medication is trial and error. What works well for one doesn't always work for another.

We'd welcome your sis with open arms and gladly answer any and all questions BOTH of you may have. I'm glad you've found us. This site has been just awesome for me, and I've had MG for 14 years (probably longer)! Wish I would have found it way earlier than I did.

Hi, is good to see a family member who is trying to help instead of malign the person with MG. So many folks have just the opposite, sadly.
Being informed is wonderful.
As to the medications that are commonly used, there is a website MGFA that will tell you all about the mainstays for treating mg. Why each one is used or not used. The possible good vs bad effects of each.
As to what treatments each of us gets, it is very much individualized. Some get by with mestinon alone. Some get by with a combo. And then other hard headed MGers, such as myself like to have a nice salad bar type variety of medications/treatments to get by. sigh. LOL I have been on pred for about 5 years now. 60 mg a day. And have all the bad side effects to show for it. We have tried numerous times to wean off of it, but my body is very resitstant to giving it up. Currently have been at 50mg for a bit over a month now. ACtually doing OK. Of course we increased the IVIG from biweekly to weekly to help with the weaning.
So again, keep investigating things. Learn as much as you can so you can help educate your family and sis in the MG journey that is just beginning!