Myasthenia Gravis - just diagnosed

garina · Post by **garina** » Fri Mar 23, 2018 12:44 pm

I'm overwhelmed and trying to find out if the drug Mestinon (pyridostigmine) is gluten free. I couldn't find it on the internet, but my mind is not thinking straight from this news. So, if anyone knows if it is gluten free, thank you. I know nothing about this disease, but trying to take in all the info I can find from the internet. Haven't been back to the doctor yet, as this news just happened two days ago, and neuro appointment is on Tues. Just had a CT of the chest to check the thymus. Right now I can't think.

Hope someone can help.

garina

Post by **tex** » Fri Mar 23, 2018 3:12 pm

Mestinon (pyridostigmine) is available in the following forms: Syrup containing 60 mg pyridostigmine bromide per teaspoonful in a vehicle containing 5% alcohol, glycerin, lactic acid, sodium benzoate, sorbitol, sucrose, FD&C Red No. 40, FD&C Blue No. 1, flavors and water. Tablets containing 60 mg pyridostigmine bromide; each tablet also contains lactose, silicon dioxide and stearic acid. Timespan Tablets containing 180 mg pyridostigmine bromide; each tablet also contains carnauba wax, corn-derived proteins, magnesium stearate, silica gel and tribasic calcium phosphate.

Mestinon

All forms appear to be gluten-free. Note that the 180 gr Timespan tablets are also lactose-free. However, the regular 60 mg tablets contain lactose.

I hope this helps.

Please try to relax. In many cases the symptoms are well controlled by the medications.

Tex

garina · Post by **garina** » Fri Mar 23, 2018 5:11 pm

Thank you Tex. I will start taking the medicine tonight. I got scared when I started reading several patient stories and saw pictures on You Tube. I am trying to be optimistic, although, D came back, I'm sure due to stress, but I'm hoping it will go away.

I keep asking myself - what are the odds of getting this rare disease in my mid-70's! I'm going for a walk. . .

Thanks again.

garina

Joefnh · Post by **Joefnh** » Fri Mar 23, 2018 5:57 pm

Hi Garina, I have been a member here for a number of years and was first diagnosed with MC (CC) and about 4 years later Myasthenia Gravis (MG). Overall MG can wax and wane just be cogniscent in how it is affecting you and really learn to listen to what your body is telling you. Stay in close contact with your neurologist regarding the symptoms as in some it can affect speech and swallowing at times; although many with MG never have to deal with that part of it.

One slight caution regarding Mestinon or Timespan, both of which are made from Pyrodistigmine Bromide, is that medication while improving strength in those with MG, it also increases the gut motility. This medication is sold in Europe for just that purpose. In times when your MC is acting up keep in mind that the Mestinon / Timespan can tend to make things more active, right when thats the last thing you need :-)

Hang in there for most MG is just an annoyance, but just watch for any symptoms related to chewing swallowing or breathing and be sure to get in touch with your neurologist if you notice any of those. Most never deal with those symptoms but its good to be informed and aware.

Best of wishes

garina · Post by **garina** » Fri Mar 23, 2018 7:13 pm

Hi Joe, Thank you, thank you, for your information. I didn't know that about Mestinon. My D has been in check for a while now, except this news of MG must have triggered this flare. I start the Mestinon tonight, and I will stay home tomorrow, just in case. I'm reading all I can about this disease, as I want to be aware of symptoms. I have double vision, and that is how I was diagnosed.

I will try to be alert to symptoms that relate to emergencies. On Tuesday, my neurologist appointment is to discuss the CT scan I just had. I'm not sure I understand the relationship to the thymus (thymoma), and I hope that is not a problem.

I'm surprised to learn what Mestinon is used for in Europe. Good to know. I definitely will be aware.

I'm grateful for your information. Big help to me. Given the fact MG could be an annoyance - I can deal with that!

Many thanks,

garina

Joefnh · Post by **Joefnh** » Fri Mar 23, 2018 7:41 pm

Garina, the thymus gland that they took the CT image of can get abnormal in some cases of MG. The thymus gland produces T cells (Thymus cells), which are part of the immune system. With a thymus gland that has abnormalities the T cells can wreak a bit of havoc on the body in the autoimmune sense. If the Thymus has irregularities they may discuss taking some corrective measures.

Its good news that the main symptoms is just the double vision, thats how many are diagnosed initially and for many thats the only real symptom they deal with. However in some, over time, the MG becomes whats called “generalized” which is when you notice weakness especially as the day goes on or you are active, in your arms and legs. In all of these cases Mestinon is the mainstay treatment, for some low dose prednisone is added to help out, which by the way also helps the MC. You may want to review with your pharmacist all meds you take, both prescription and over the counter. Many meds are anti-cholergenic; which can make your MG worse.

Keep in mind that as you noted, MG is rare. As such many doctors can go their whole career without seeing a case. Ask your Neurologist some frank questions to find out how many cases that they have dealt with and dont be afraid to seek a second or third opinion. It’s important to have a doctor that has practical experience with MG.

So far it sounds like you and your doctors are dealing with things by the book which is great, hopefully and most likely this will just be one of those annoying things in life, not a big issue.

Feel free to PM me or leave a message here if you have any questions.

Take care

garina · Post by **garina** » Sat Mar 24, 2018 2:01 pm

Hi Joe, I started the Mestinon last night and made it through the night without issues, so, good start. Odd, but I've had double vision for 20 years, and I was only given more and more prisms to correct it somewhat. It got to the point even prisms did not correct it as it should, so I complained at my next appt with my primary dr. and that's when he ordered an MRI. When it came back normal, he then spoke to a friend of his, who is a neurologist, then begin my journey for a diagnosis. I also am extremely light sensitive and had to exchange light bulbs in our house from CFL to lower incandescant bulbs, which has helped. That got worse throughout the years, also. I just never had any answers and assumed it was part of the aging process. Well, I guess it could be!

I'm in appreciation of Tex who mentioned that Mestinon contain lactose. So, I will be aware.

I do want to PM you as I have learned so much just reading your posts.

Thanks again,

garina