New to site
 

Hi I was diagnosed with MG February 2012 after finding out I was pregnant a week before. I spent most of my pregnancy in the hospital one time for 21 days not being able to eat or even swallow my own salavia. My daughter was born 9 weeks early because of so many complications. In October I was in the hospital again because I couldn't see.
Later to find out that I had cataracts in both eyes I am 29 years old. They say it was from the prednisone my doctor has been trying to take me off of it but every time they do I end up not being able to eat am very weak have slurred speech. There are many times I can not even take care of my daughter and my family is here to help but just want my life back. I had plasmapherisis done and it helped for a bit.

I recently had IVIG done and that seemed to do nothing. I want to know if there is anything that I should ask my doctor to put me on that might help me better. Right now I take Mestonin 60 mg 4 times a day and I am back up to 40 mg of prednisone a day. Was down to 10 mg but all my symptoms started coming back. I am just so frustrated and want to be able to have one week without having issues just looking for any advice.

Welcome to the group. You're among a lot of people who get what you're going through.

Where I live, there are some MG patients who are on regular plasmapherisis - if that worked for you for a bit, maybe you can get your doctor to get you on that until you get a better control on the MG. I understand that IVIG is not as quick as plasmapherisis, it takes several treatments for that to kick in...

Brian

I'm so sorry you're going through this! It must be so hard to be so weak with a new baby. I will try to appreciate a little more today the things that I can do.

From what I've read here, I have the impression that it's common for the first IVIg treatment not to do much. If they offer you another try, don't automatically rule it out. It could help a lot more the second time.

There are other drugs besides Prednisone that you could take, like Imuran (azathioprine). They suppress your immune system, like Prednisone, but they don't work as fast, which is probably why you were given the Prednisone.

Abby

When I started prednisone I was on high doses too. It is hard to tolerate but personally I thought it was necessary. I was up and down on dosses and have no idea the harm it has to my body. I am now down to 10 mg every other day and I think my Doctor is going to take me down to 5mg.

I have been getting IGIV’s for four years and doing better now and wondering how many infusions you have had if you will continue?

For me prednisone was a necessary evil.

I hope other therapies will work for you sooner and your reduction of prednisone will be quick.

scrubbs

I had like 5 doses of the IVIG done it seemed to do absolutely nothing

Thx for the welcome
 

Thank you all for the welcome. I do have an appointment this coming Tuesday because everything just seems to be getting worse so anything that could help that I should ask my doctor is greatly appreciated. This will only be my 3rd time seeing him.

When you say five doses, do you mean all in the same week? When I said that the first treatment sometimes doesn't help, I meant the whole first course (usually five days' worth). If they offer you another whole course in six weeks, consider trying again.

Abby

I hate to say this but finding the treatment that works for you MAY take a year or two.
Mike

so sorry to hear you are going through this and with a little one too! I got sick when my youngest was 6 weeks (my oldest was only 16 months at that time - so we had our hands full too)... it broke my heart to be sick and unable to care for them.. but they don't know the difference at least!

Are you Musk positive? As the others said about the IVIG.. i had only slight improvement with the loading dose (I couldn't tell if i was better due to resting in the hospital, or if it was placebo effect).. the 2nd round 3 weeks later seemed to really do the trick.. we have also had to play with the dosage of the IVIG.. otherwise some people just don't respond do IVIG and like others said just have to find the right cocktail - prednisone can make some people worse too.. or it can be the best med for others..

Are you at a local neuro or a university specialist? or MG specialist?

Hi, tk3891. Do you have a less mathematical name? ;) Welcome!

I'm sorry you're going through so much. MG is NOT fun.

You might need some advice on changing the Mestinon dose or frequency. More isn't always better with Mestinon. Some people do better with a more consistent dose, like every 3 hours. A higher dose isn't always better but talk to your neuro about trying 90 mg. later in the day to see if it helps. Don't make changes without that talk though! And some people do well on Mestinon Timespan at night, in order to get a better night's sleep. My MG wakes me up literally every 3 hours. It's beyond annoying, though I do appreciate that the drug exists.

I wonder if you are so bad right now that you might need a higher dose of IVIG or more consistent infusions.

Pred can be very hard to get off of. It can do a lot of damage to the body on a long-term basis too. Sometimes neuros do a "priming" dose of Solu-Medrol (it's IV steroids) when an MGer is worse but it might not be a good idea since you could get worse temporarily. Just a thought.

Due to the cataracts, it might be a good idea to get your vitamin B12 checked. Yeah, it could be "just" the steroids but a deficiency can contribute to that too.

Are you on Calcium/Magnesium/Vitamin D? Have you had your Vitamin D levels checked? B12 and D are common deficiencies.

Don't forget about regular thyroid checks too. Many people with MG have some type of thyroid issue.

I hope you and your neuro find the right treatment balance that works for you. I hope your daughter is doing well. It can be hard having MG and being a Mom but many people with MG find ways to do it well.

Annie

Thanks
 

Thanks for all the suggestions Im not sure what u mean am I musk Im not 100% sure what kind I have as I could not see a neuro for I could not find one who accepted my insurance till December so every time something went wrong just ended up in the hospital. I just go to a regular neuro he is not an mg specialist would that be something that I should try to find? Not sure what is offered in Orlando, Fl area. I seem Especially when I get to hot my voice slurs real bad and just real frustrated. Didn't expect to be back living with my mom cause I couldn't take care of myself and my daughter. My husband couldn't deal with it and disappeared but that is another story lol. Just trying to deal. Thanks everyone.
Tabitha

I had the cataracts removed immediately as I could not see. My daughter is doing great ty

Agreed...you may need a higher dose of IVIG. If you aren't getting enough you won't see the benefit. Do you know how many grams of it you got? How many consecutive days was it for? Was it a five day loading dose, five straight days? If not, how many days and how spaced out?

I go every two weeks and get 30 grams a day for two days. Without it, I go into crisis really quickly.

Back to doing no good my neuro took me off prednisone and put me on 180mg of timespan mestonin with 2 other does of 60 mg mestonin. Just feel so exhausted and week just want my doctor to give me some more info and he seems to know nothing tried getting a new doctor and having trouble with that. I really know nothing about what I have and it frustrates me. Trying to get in contact with a local support group now. Hoping to get some help there. Have to go back to neuro this Friday for some reason he thinks he only needs to see me every 4 months makes me very mad. Just tired and venting Florida Health Care is no good.

Tabitha

I would try a large teaching hospital where they see MG all the time. My doctor is a 3 hour round trip but specializing in MG and I think it is worth traveling that
far. I found him through an internet search.

There are other treatments like plasmaphoresis and numerous non-steroid immunosuppresants they can try.

Good luck
kathie

Did they do a CT scan of your thymus? They often will remove an enlarged thymus and most people find improvement of symptoms.

kathie

Yes they did but they did not say anything about removing it so im guessing that maybe it wasn't a good option for me

St. Petersburg is a couple of hours from Orlando but one of the best MG experts/MDA Directors is there. Dr. Allan Weiss. 727-820-7701

It might be worth a consult. If you go, bring your CT films/report with you too.

Your doctor took you off of Pred? How long had you been on it and what dose?!!! Taking someone off of it too quickly can result in an adrenal crisis! OMG.

Please do consider seeing Dr. Weiss for a 2nd opinion. He is amazing.

I hope you will get the care you need soon. And get your B12 checked anyway!

:hug:
Annie