Posting about treatment

[lovemydoggy]

My mom has generalized MG. I have used healthunlocked for a few years. I have palindromic rheumatism and get a lot of info from the NRAS forum. I also use Facebook forums for PR as well as the one for MG. I think it is vital to any sort of significant help that discussion include treatment modalities. There is a difference from urging someone to take a medication and simply stating one's own personal experiences on their MG journey. I see the membership here is small and I'm not finding the level of information or support that is on the MG Facebook forums or the other forums on HU. I'm looking for information on people's personal journey, including treatments, and a place for support in going through this journey with my mom. Maybe I'm missing something, and if so please forgive me, but I have questions and need support. I hate seeing my mom living with this horrible disease. Without revealing the medication she is being treated with her neurologist gave her a prescription that we aren't even sure is working. She continues to take it, but needs something else or in addition. Her quality of life is very poor. She has other significant health issues, which may prohibit certain treatments. I don't know what, if anything, this forum can provide me. I'm just asking for help of any kind.

Thanks for reading

[STUBBORNGIRL7368]

Hi, my life with mg was horrible until I had a thymectomy.. My doctor told me it could take up to 2years to see an improvement. Sure enough, around the two year mark my mg went virtually non existent. I hope this helps.

[lovemydoggy in reply to STUBBORNGIRL7368]

Wow, that's amazing! So happy for you.

[STUBBORNGIRL7368 in reply to lovemydoggy]

I want to add it has been 19 years in remossion

[CDreamer]

Hi - bit late on answering but like you, I found this forum somewhat of a dessert so stopped following.

Hopefully you will have found more information by now but in case you haven’t:-

Treatments depend upon the type of Myasthenia you have - has that been established?

Most common - Myasthenia gravis and ocular myasthenia. Lambert Eaton has a different antibody and to date there are at least 4 other known antibodies. Congenital Myasthenia is a defective gene. As you may imagine - all respond to different treatments.

The usual 1st line treatment is Pyridostigamine bromide or Mestinon. This helps symptoms but only lasts for about 3-4 hours and doesn’t treat the disease. If your doctor agrees you are much better controlling your own medication regime as the amount required can vary on any given day.

Pyridostigamine doesn’t address the root problem and those treatments can get more and more aggressive, dependant upon the symptom severity. Basically I have found if you can breath, keep your eyes open, walk and talk - you won’t need the more aggressive treatments.

Steroids seems to be the most common treatment - and the one with the most devastating long term affects so avoid if possible.

Thymectomy can help some, more helpful for younger people and wasn’t advised for me.

Immune suppressants are commonly prescribed - I am on Cellcept - Mycophenolate mofetil - and currently I would describe myself in medicated remission. I am on the highest dose - 3g bd and take up to 3-5 60g Pyridostigamine bd and can titrate up to 8x60g bd if I need.

I have had a couple of minor Mg crisis which were mitigated with BiPap + Pyridostigamine which I have at home - and have had no hospitalizations.

If things get more serious then IVIG is next step, along with other more invasive treatment but only when all else has failed.

I hope by now you will have looked at the Myaware Page - lots of info myaware.org/

But it is in the UK and my guess is that you are US based - so myasthenia.org/ may be more appropriate. Both sites have great info - treatments do vary between the 2 countries so worth investigating both.