Newly diagnosed
Started treatment this week for mg 4 x half pyridostigmine but only slight change...is this normal? Also im in the UK and would love to connect with others as I think it's difficult for others to understand tbh
Hi...lovely to hear from you...I've literally started this week so only on 30mg x 4 to start with...I'm hoping it gets increased at my next appointment but because its the UK and the NHS it'll probably be a while yet... I feel so disheartened...after years of suffering i was relieved to finally get a diagnosis and was expecting instant relief but i guess I'll have to wait to get it increased by my neurologist...makes you feel so alone...no one seems to understand and make you feel like your just lazy
Hello, I was originally started on generic Mestinon, Pyridostigmine Bromide 60 mg, 4 times daily, and IVIG (Gamunex) every 4 weeks. I had all the expected side effects with the Mestinon, the GI upsets, and runny nose. I found that mint calms the stomach, Imodium (Loperamide 2mg.) calmed the GI tract, and Guaifenescin helped with phlegm. I asked about time-release Mestinon and was brushed off, I kept asking about it and am now on it, 180 mg tablets. For me, it has been much better! Depending upon my symptoms, I'll take a half tablet twice a day when I'm feeling good, and gradually increase it to 3 tablets per day at my worst. The tablets give an immediate release of one third of the dose, then settle down to a slow release of the rest over the next 6 to 8 hours. Fewer side effects, and only in the beginning. I can't tell you how much more I prefer the extended release version over the fast acting tablets. They are about $30USD for me for a 3 month supply and worth every penny. Sorry to have gone on, I'll just add that I'm also on Mycophenalate, and Vyvgart. I cannot take Prednisone as I am diabetic. Don't lose hope, once your Doctors get your meds dialed in, you can feel normal again. I'm getting back to that point, you will too! Stay healthy, Bob
Thanks for the advice...I'll keep that in mind for my next appointment 🙂
Hello
I'm glad you were able to start treatment. This is always a step in the right direction. What dosage are you on (how many mg?) I take 3 60mg tablets of pyridostigmine a day. I'm no doctor, but from my knowledge this medication serves for short term relief from symptoms. You might need another medicine in combination with the mestinon to see any long term results.
I take:
3 60mg tablets of pyridostigmine (mestinon)
1 10mg tablet of prednisone
IVIG infusions once every 4 weeks
Remember that everyone will experience MG in their own way and the healing process differs from person to person. This may be hard but Try to be patient because even when you increase medications it has to be done gradually. Also, be in good communication with your doctors. You should be 100% comfortable with your treatment plan and if you're not always talk to your doctor.
I'm here for you if you want to chat. Happy road to remission.
- Jazmin (team member)replied in the wrong bit 🤦♀️
