[Deb Couraud]

I am on Rituxan every 4 months IV now with low dose Prednisone, Mestinon 60mg 3 x’s a day, and IVIG every 3 weeks by Infusion RN. Imuran caused me so many side effects I was miserable and no quality life. I had to get off of it. I was in the hospital 3-4 times a year until Rituxan. I am grateful to feel better since Rituxan the best I have been in 5 years. I have had Plasma exchange had relief of symptoms but it was not lasting more than 4-6 weeks. There are other chemo drugs in use to treat gMG and new ones on the horizon. My neurologist is awesome and has 100% of my trust. I am grateful to be diagnosed and have a treatment team that listens and are aware of all treatment modalities currently used and under studies.

I am so grateful of Methodist Hospital Neurology in Houston. I went to 3  hospitals with Neurology before I was able to get a diagnosis. It should have been an easy assumption with Stage II Thymoma and Sternotomy for the cancer to remove it. It wasn’t.

[Deb Couraud]

I am on Rituxan every 4 months IV now with low dose Prednisone, Mestinon 60mg 3 x’s a day, and IVIG every 3 weeks by Infusion RN. Imuran caused me so many side effects I was miserable and no quality life. I had to get off of it. I was in the hospital 3-4 times a year until Rituxan. I am grateful to feel better since Rituxan the best I have been in 5 years. I have had Plasma exchange had relief of symptoms but it was not lasting more than 4-6 weeks. There are other chemo drugs in use to treat gMG and new ones on the horizon. My neurologist is awesome and has 100% of my trust. I am grateful to be diagnosed and have a treatment team that listens and are aware of all treatment modalities currently used and under studies.

I am so grateful of Methodist Hospital Neurology in Houston. I went to 3  hospitals with Neurology before I was able to get a diagnosis. It should have been an easy assumption with Stage II Thymoma and Sternotomy for the cancer to remove it. It wasn’t.

[Deb Couraud]

I am on Rituxan every 4 months IV now with low dose Prednisone, Mestinon 60mg 3 x’s a day, and IVIG every 3 weeks by Infusion RN. Imuran caused me so many side effects I was miserable and no quality life. I had to get off of it. I was in the hospital 3-4 times a year until Rituxan. I am grateful to feel better since Rituxan the best I have been in 5 years. I have had Plasma exchange had relief of symptoms but it was not lasting more than 4-6 weeks. There are other chemo drugs in use to treat gMG and new ones on the horizon. My neurologist is awesome and has 100% of my trust. I am grateful to be diagnosed and have a treatment team that listens and are aware of all treatment modalities currently used and under studies.

I am so grateful of Methodist Hospital Neurology in Houston. I went to 3  hospitals with Neurology before I was able to get a diagnosis. It should have been an easy assumption with Stage II Thymoma and Sternotomy for the cancer to remove it. It wasn’t.

[Deb Couraud]

I am Seronegative Disease.

Briefly it took almost 3 years of going from Neurologist to Neurologist after my Thymoma was found and Thymectomy to get a diagnosis.

I was not believed told nothing wrong go back to work. I was treated for anxiety, depression, etc It was a resident of one of the not so nice Neurologist  that said “I think you have Myasthenia Gravis.” I finally thought I had an answer.

I finally got an appointment at Texas Medical Center Methodist with a Neurologist and within 5 minutes of talking to him and an exam he said you have Myasthenia Gravis . Its been good just knowing. I had a host of treatments Plasmapheresis, IVIG,  Imuran, Mestinon, Prednisone, Rituxan. I thank God everyday for Methodist and their Neurology department. I have my life back and have learned how to manage my disease and limitations.

With Rituxan every 6 months , IVIG every 3 weeks , Mestinon, I finally have my Prednisone from 60mg a day down to 10mg every other day. IVIG will be tapered next. My symptoms are minimal with no muscle weakness swallowing difficulty double vision is gone as well. If very  tired or temperate hot have mild ptosis.

Advocate for yourself, do not accept mediocre care, or a physician who isn’t interested in caring for you. My physician is not just brillant, kind,he’s genuine and an amazing human being.
I thank God every day for Dr. Nakawah.

 

 

[Deb Couraud]

I hate Myasthenia Gravis hate it. I want my life back hopeful Rituxan will help with that . My neurologist told me to not push to exhaustion try to stop and rest but when I a few good days I go for it. He said not stopping and pushing sets me up for flare ups. My whole life I have been a go getter . Gosh I don’t want to be on the pity pot but it’s been a hard 4 years. I am learning to take breaks and rest when I have to. I have learned to respect the disease and the limitations I am adjusting to. I can walk a mile or 2 okay great but I can’t climb or hike 6-10 miles anymore . Heat is a killer so cool weather is a welcoming event.

I had huge plans for my retirement to travel, hike, camp National Parks and some International destinations. I managed to go to John Muir and walk the easier trails, Watkins Glen, Yellowstone, local Wildlife Refuge parks. I am grateful for that but it was earlier in my MG and I have worsening gMG now.

[Deb Couraud]

Weight gain from Prednisone yes about 18 pounds just couldn’t get it off. Really affected my self esteem, hated the chubby cheeks! Neurologist finally got my MG under control and decreased my Prednisone lost all but 2 pounds and feel better about that. I gain about 3 pounds after an IVIG dose but after a week or so it’s gone. I am on Zoloft but it doesn’t seem to affect my weight.

[Deb Couraud]

What social life !!! I worked 45 years full time never sick .  I love the outdoors and extreme physical activities having been a hiker, camper, and loving the outdoors. I was never depressed being outdoors in the forest or mountains was my Prozac. My friends have slowly drifted away because the majority of them were from work . My family are busy working and living their lives . I do get to babysit my grands and great grands which I enjoy but I have little adult interaction my husband is still working full time. What Myasthenia didn’t steal  Covid crushed .

[Deb Couraud]

Managed not to get Delta but 2 Pfizer Vaccines and Booster later  after my regular 3 week IVIG Dose and my every 6 month dose Rituxan which I received.
I woke up extremely sick. My PCP ordered me the Monoclonal Antibodies specific for Omicron which was detected in my PCR . I just couldn’t recover my Covid symptoms were better after 3 weeks but the illness put me in Crises so ended up on Covid Unit in full blown crisis. I was given 5 days of IVIG . I am better but still fatigue weak and have ptosis blurred but not double vision.  The hospital was tough because on Covid Unit not Neuro the nurses not really up to par on Myasthenia Gravis or IVIG plus they would not let me have any personal property except phone and charger no visitors at all .

Myasthenia Gravis is a very solitary disease the isolation and loneliness constricts you like a Python taking the very life out of you .

Rituxan seemed to improve my symptoms best I’ve been in 4 years. Imuran, Mestinon, IVIG every3 weeks, prednisone couldn’t do that . I was out of the hospital for the first time since my diagnosis for a entire year. Covid took its toll on me .

[Deb Couraud]

I was rereading this post and the reality of how different our interest were in TV shows and movies. I also realized that we on some level had to alter our lifestyles because of Myasthenia. I haven’t thought of Alfred Hitchcock but think I will watch those maybe see if can find Red Skeleton did record House of Wax will watch it one day.

 

[Deb Couraud]

Yellowstone, Jack Ryan, The Man High Castle, The Marvelous Mrs. Maisel, The Great British Baking Show, White Princess,Cobra Kai . I never was a TV person until MG forced me to change my lifestyle.

I have always been very active exercising, hiking, camping etc.

I have found that TV and Series as well as a movie helps with relaxing and stress. Instead of going outside and walking 5-10 miles I now depend on quiet activities.

[Deb Couraud]

I actually am very cautious with OTC and Herbal medications. My Neurologists has cautioned against prescribed, herbal, and OTC meds because of the effects they can have on Myasthenia Gravis patients.

We have discussed the particular drugs deemed okay for MG patients and he gave me a short  list of those he deems safe and those to avoid. If I have a question I can message him in my chart and he advises me.

[Deb Couraud]

I had a reaction to Gamunex-C  after  a hospital stay of 5 doses and discharge followed by infusions at home x 1 in one  month.  After home dose I was covered in a rash, nausea, but no headache, no itching, rash was not hives. I have pre-meds before each dose Tylenol and Benadryl.

My rash lasted 3 weeks. It was miserable .

I went to allergist/immunologist was told it could be Gamunex switched to Privigen  no problem since and have been on Privigen several years.

No brand proven more effective than other but my allergist felt it may have been related to the additives or inactive components in the Gamunex but who knows for sure.

I just know the change in brand fixed the problem. So I would say what does it hurt to switch brands. Doctors sometimes just get use to prescribing one brand vs another.