[TheresaG]

We have definitely come to the time where everyone will do as they prefer and suffer, ( or not) the consequences of their actions and decisions.

at this stage, I doubt anyone can convince another of anything on the subject.

that said, I recently read on one of the autoimmune websites that autoimmune people have a more robust immune system so perhaps will be less likely to contract any virus. However, once we do contract it, we may have a more difficult time dealing with it as it will grab on harder with our suppressed immune systems due to medications.

this was true with my daughter with Lupus for 27 years. She was less likely to get a cold or flu but when it did get her she would go down hard , pneumonia, bronchitis etc.

I have no agenda other than to share this information.

i agree that with both the vaccine and catching Covid, in 10 years we will see a huge explosion of many autoimmune diseases.

My husbands cardiologist has said 99% of the people in the hospital today and the ones dying from Covid are the unvaccinated, for what it is worth.

 

[TheresaG]

Three years on Prednisone has added 20 pounds. 2 years 5mg, last year 13.5-20.

I definitely feel the added weight has impacted my flexibility, SOB, and joint pain, but who knows. I was 10 pounds underweight prior to the gain, so I would be very happy to lose the 10. The weight is in my torso, which never has been an issue for me.
need a new wardrobe, or maybe not as my social life is nonexistent, thank you MG. Lol

don’t think I’ll be off of prednisone ever, I am on IVIG, and as soon as we can stabilize the added prednisone, perhaps the azithioprine is something to look into if it does the same thing and same benefits.

opinion?

thanks for any input.

 

[TheresaG]

I just completed my 4th round of IVIG infusions. I go every 2 weeks 2 days in a row to an infusion center. I too am given Benadryl for any allergic reaction and 2 Tylenol. This week as I am not a 4 time veteran, lol, I asked if we could pass kn the Benadryl to avoid the fatigue and I also regularly take Zyrtec , nurse said yes as I’ve had no reaction. The only reaction I ever had was 1 headache, due to not hydrating enough between day 1 and 2. They say to drink clear water half your body weight beginning 48 hours prior and 24 hours after to flush kidneys and also to get hydrated. The nurse also told me that the IVIG actually pulls the fluid from the interstitial tissue, which is why many of you may notice a loss of puffiness after the first day. Love losing 2 pounds. Still on prednisone but reducing it. Down to 12.5 mg from 2.0. Yay. I’m at the point where I will only go .5-1 mg each 2 weeks as I am very sensitive to the steroid withdrawal symptoms. I’ve been kn the, for 3 years, different doses from 5-2.0 mg. So it has had its fun with me and I am thrilled to be off.

I have had a very positive response. I feel I am about 80% better after treatment and seems 2-4 day before treatment I begin dragging.

I have likened it to a full tank of premium gas. If you keep the pedal to the floor for 2 weeks, you will run dry, so I “try” to still manage my output so I am as normal as I can be.

my droopy eye persists, so I still use mestinon. I am hopeful once off steroids or at least down to 5 mg, and my body stabilizes, the droopy eye will cease.
I feel that while you are in one hand fixing yourself with IVIG, coming off the steroids creates a hard balance, so until off them I won’t know true effectiveness.

i am also wondering if I need a slightly higher dose to get a fuller tank of gas.
‘Happy New Year to all.

[TheresaG]

I too was looking forward to the approval and my neuro thought it would get approved for us as well.

i meet with him on 1/10 hoping to get info.
I started IVIG 6 weeks ago hoping it to be a short term deal.

I wonder if the drug company felt the approval would get the best chance of approval this way and we seronegative people will have to get approval off label which is how IVIG is anyway.
we will see……

merry Christmas to all.

 

[TheresaG]

Absolutely allows my participation.
as a cancer survivor, I learned to be my own advocate, research the newest and greatest and try to align myself with research and or specialty institutions that do research and know the latest treatments. This site and the participants input has been invaluable to see who is doing well and who is not and what their treatments are. I want to I cur the lease side effects and as one noted above, move towards remission. Not just get by. Life is too short. QOL is critical.

[TheresaG]

Symptoms, initially eye droop, and overall fatigue.

began in 2012, then in 2013/2014, I had problems that had to be investigated, leading to an 18 month diagnosis of another rare disease of Neuroendocrine Cancer. Time out for surgery in 2014, then when I did not regain my otherwise prior great health, energy, etc, and the fatigue started getting worse. Up in the morning, shower, dry hair, go to bed as I was exhausted. Shortness of breath, ongoing eye issues. Neuro opthamologist ran the antibody test, negative, did again 2 years later as vision deteriorated. Then my neck was so painful had to hold,d it with my hands. Eventually had 2 discs replaced which I do have spinal disc issues, but now wonder if it was the MG. 2017, again antibody test after going to a rheumatologist, who out me on prednisone, only 5 mg, for mixed connective tissue disease. I do also have positive ANA antibody, centromere antibody, so clearly autoimmune issues, along with other family members.

then in 2018, after seeing every specialist for everything from pulmonary, cardiovascular, etc, etc, and one UCLA neuro saying no way did I have MG, my opthamologist finally sent me to a neurologist who confirmed with single fiber nerve conduction that it is MG. So I’m guessing it took, 9 years of VERY actively searching with multiple specialists as to why my life came to an abrupt halt. I wonder if my body fought the cancer so hard that it induced the MG. Way too long.

[TheresaG]

I started on 2×60 mg/day, then bumped  to 3. I began the cramps in 2, then the Gastro issues at 3. I would try to go to 4, and that caused lots of gastro.
my neuro recommended taking 1,1/2,1,1/2 etc. this helped.

Now 4 months later, I’m able to take 3.5-4 a day, and do 1,1,1/2,1. On about the 3rd day the gastric issues kick in so I will skip a pill or extend it an hour.
so for me a gradual approach and allowing my body to acclimate helps. I will still occasionally get cramping but not the jump out of bed ones in the middle of the night.

during the summer, watermelon helped a lot!

[TheresaG]

I was on 15 mg pred and 180 mg mestinon, somewhat controlling my seronegative MG.

had 1 then 2nd Pfizer completed in February. I’m Somewhat comforted in hearing these stories as my MG exacerbated for the past 6 months. I was under great stress, moving remodeling , so attributed it to that.
My response to vaccines were headache and feeling crummy for 1-3 days, nothing terrible. Have not had Covid.
Husband received at same time and he had no reaction.
3rd shot. – I had no side effects, husband felt terrible headache, achy, for 3 – 4 days.

makes one wonder how it affects anyone. That said I have spoken to 5 top doctors and all recommend the 3rd vaccine. Especially over 65 and being on prednisone.
my husbands cardiologist told us that all the people at the hospital since summer that are being ventilated and or death.

It is tragic any of you that acquired MG post vaccine. I’m curious if you have autoimmune in your family where it was dormant until the vaccine/Covid.

My neuro has just bumped my prednisone to 20 mg. I get really bad side effects, so we will be starting IVIG in the next week or so.

while this steps out of the subject, I would love to hear from any of you who have reduced MG symptoms and or remission after IVIG. I will be doing 2 days every 2 weeks.
thanks

[TheresaG]

Jodi,

I wonder if a prescription for Valium would work for you.

i find just a 1/4 tab if a 5mg Valium works for those moments if anxiety and sleeplessness, aches etc.

it would very likely help with any withdrawals you may experience.

used sparingly it does not cause addiction or other negative symptoms.

May I ask what MG treatments cause weight loss.

im fighting the weight gain from prednisone. Currently just pred and mestinon on board.

‘considering IVIG.

‘Thanks, happy travels.

[TheresaG]

It certainly is the double edge sword.

I am on 13.5-15 mg/day.

i also experience the bleeding and bruising as well as inflammation and broken bleed vessels in my eyes. Any Jen else experience that?

I gradually went up on the prednisone and when the side effects began I slowed it down rather than continuing to the 20 mg the neuro was looking to attain.

As a result I still experience the 12-2 p.m. body crash. For those of you in higher doses does it actually stop the MG symptoms?

I also was taking 81mg aspirin and stopped. It has helped with the bleeding.

I have tried to reduce and as my daughter has Lupus and was in high doses had her input to go as slowly as 1/2 mg every 2 weeks. Invariably the MG symptoms exacerbate and I succumb to either taking an extra 2.5-5 mg/day. Which gives me a couple g0od days but then gives way to symptoms.

I think I am somewhat content to keep it at 15 mg or lower and occasionally get a great day or 2 with a higher dose. Keeping my side effects hopefully to a minimum.

it actually is how I became to be convinced and the doctors as a result of taking prednisone for other reasons and all my mg symptoms went away. Like I could see to drive! No double cars on top of cars. That gets scary.

Do any of you take prednisolone instead of prednisone and experience any better results?

I like the idea of every other day steroids, and those of you that take it this way so you think you experience less side effects AND what is the second day like for you?

Thanks

 

[TheresaG]

Hi All,

I was diagnosed 10/2020 by a neurologist after 8-10 years of graduating symptoms which began with droopy eye, double blurred vision, shortness of breath, fatigue, upper body weakness which fatigues out with usage. I was dx’d seronegative MG.I had spent a good deal of the 5 years prior dysfunctional and in bed a lot. Showering, drying hair, putting  on makeup would out me back in bed, SOB and exhausted.

I was put on prednisone by a rheumatologist prior to MG diagnosis due to positive ANA and centromere antibodies and we figured out a low dose gave me a portion of my life back.

After diagnosis mestinon was added, initially, 2×60 mg, now up to 3.5 x 60 mg. Prednisone was upped to 15 on the way to 20 but side effects stopped me at 15 and I’ve backed down to 13.5 mg, which just barely mostly controls symptoms. I had prisms put in glasses which helps when I’m at my best but not always at my best.

Stress, HEAT, excess talking, over doing physical activity sets me off.

I’ve been really great since Fall arrived and temps are down to mid 60-70 in the day.

Today I got off schedule, window washer here, I’m outside talking, it is in the sun and BAM, I’m short of breath, one eye closed and so here I sit writing this. Which I will find reading and sitting at the computer will wear me out as well, so can only do so much of that.

and like many of you state, 60-90 minutes of sleep will refresh me.

As a result I have just taken 4 mg more prednisone to see if it helps.
I’m looking for input from this MG community to see if this sounds like how any of your lives go this way.

Reason…..I recently moved, saw a new neurologist who thinks my disease may be a muscle (genetic) disease. Possibly with ocular MG and wants me to do a muscle biopsy. He says that because only 2 of the 20 muscles in the nerve conduction study done on my forehead does not give positive diagnosis. This was after 2 tele health appointments where he initially wanted to sign me up for IVIG.

After 10 years of the symptoms, Hundreds of tests, cardio, pulmonary, rheumatology, etc only to get confirmation that I am healthy and cannot find anything wrong.

Everything I read and hear like on this site, tells me MG is the correct diagnosis given I fit 10 out of 10 of the criteria for diagnostic symptoms but of course as I do not test out with the blood tests, so makes it difficult to get the true diagnosis.

I read how some of you manage with only immunosuppressants and mestinon, while others go the IVIG and cell crept route. Is this a matter of what is available to each, the doctors choice or truly does it vary that much that you can get by with less treatment?

Thank you for reading and appreciate any input/ feedback any of you may have.
Theresa

 

[TheresaG]

I was given gabapentin years ago before MG dx and I had severe pain in rib/lung area and difficulty breathing.
It was given for chronic back pain.

[TheresaG]

Christine-

I empathize with your situation.

i too have always had dogs, most current is a rescue tibetian terrier, 15/16 yrs. Old.

many health issues.

i know his “a time” is near.
may I recommend to you and anyone else in this situation a website. Lapoflove.com.

it is a animal hospice group of vets.

there are some wonderful videos and information to assist in when it is time.

I have found it extremely useful and I have used them in the past. Nothing more wonderful than an animal being able to spend their last moments at peace in your arms.

my boy, Webster, is becoming more maintenance but fortunate my husband does his walks. Except for the past 2 months as he ruptured a disc in his back.

We got through that but the animal needs are time specific which does not always meet with my good times.

i would actually in the future consider a dog trained to assist me should there be a crisis or other “senior” event.

An empty house would be hard to come home to.

We love our pets!🐾🐾🐾💜

[TheresaG]

Anita that’s very positive input and I love the thought of it. However, I have so many to-do lists that I can’t get to the end of in order to slow down.

Until then I just keep pushing that ball up a hill and the days I can’t I don’t. I am getting better at accepting that.

It would be so nice not to have this limitation.
I feel sorry for those of you that acquired this at a young age.

[TheresaG]

Nan I too am seronegative.
my neurologist is using it already off label. It can be done.
I have been On IVIG for only two months. I’m also on prednisone and Mestinon. I am currently in the process of getting my prednisone from 20 mg down to seven or eight. So my thought was I will wait to stabilize that and then attempt the VVygard as I don’t want anything in the way to analyzing it. I do fully intend on giving it a try due to the less side effects.
you might want to ask your neurologist if he can make that happen for you if you’re still interested. The delivery system is you go once a week for an hour for the first four weeks and then to about two months later depending on how quickly it gets out of your system you’ll need to repeat it but it certainly sounds very promising. I figure that also gives my neurologist a chance to work with a number of patients to get his results.
Either way you go good luck.

[TheresaG]

They actually included I think 27 people or so in the study and they had mostly positive results. But I agree they likely have to have an independent study with just seronegative. Hopefully we won’t be neglected as there not nearly as big a group of us. That’s why I wonder if they will just use it off label for us.
time will tell.

[TheresaG]

Bernadette

can you explain what double Seronegative means?

thank you.

[TheresaG]

The ground in prisms on glasses I found way better than stick on ones, in fact the stickies did not work for me and caused migraines.
I get my glasses at Costco, and it only adds $30-50 if you want them permanent. I pay $129. Total for new prism prescription lenses, with all the non glare goodies etc.
I Also have them reuse frames as my sight is constantly changing with new meds etc. gets expensive for sure.

[TheresaG]

Wayne, 12/23 as you likely know is the approval date with the FDA, then Medicare has to approve but it should be available after the first of the year according to my neurologist.

[TheresaG]

It is one of the potential lovely side effects.

are you on a high dose?

my daughter was in 80 mg for lupus, developed moon  face, good news if and when you come down or off it too will go away.

it took a year for her body to normalize and fir it to begin producing cortisol again. The steroids stop your body naturally producing them which is why it us so painful when you get down to the last 10 mg. Or so.