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DEBBIEANNE1124's Photo DEBBIEANNE1124 SparkPoints: (99,650)
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11/22/14 11:20 P

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All of my Dr.'s are trying their hardest to avoid putting me on Prednisone unless I ahd a crisis/flare. Because i am on insulin. Pred is the best worst drug on earth. Not only is there weight gain with long term use the adrenals will completely shut down. If your husband is able to please make sure he gets plnty of water and exercise.



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ILOVETOCRUISE's Photo ILOVETOCRUISE Posts: 8,579
11/22/14 7:28 A

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I have been talking to my husband about the VIT B shots. I had my father get them and it helped. He does take the vitamin.
My husband is on prednisone and it is a problem because of weight gain for one. His doctor has cut it back from when he first started the medicine.

Leona

Edited by: ILOVETOCRUISE at: 11/22/2014 (07:29)
DEBBIEANNE1124's Photo DEBBIEANNE1124 SparkPoints: (99,650)
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3/20/14 12:56 A

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Hi Meg

I spend a lot of my time doing research on this dreadful disease. I don't take Prednisone but hear that it is the best worst drug on earth. :-) It helps with improving one's breathing, swallowing issues and strength to name a few but it also comes with it's evil side effects. I only take CellCept and get IVIG every 6 weeks in the hospital. I also take 1000 mg B-12 and Viot D. Some people get the B-12 injections once a week for strength and swear that it really helps. You can also get your B-12 in the foods you eat. I did have trouble with Nausea when I first started taking CellCept which is like Immuran. I had to reduce my dose and work up to the maximum dose. I'm losing weight fine now but there wwas a time when it was at a stand still. I am on several Facebook Myasthenis Gravis Groups where I ahve made friends and recently met 2 women local to me with MG. Their MG is far worst than mine. I am really blessed that it hasn't traveled through my body. Because I am diabetic it will be really tough to go on Prednisone if i need it. You may have days weaning off of Prednisone where you feel so rotten you want tos tay in bed. I believe that will pass as you get your strength back. My Thymus gland is normal so I didn't ahve to ahve mine removed. I haveSero Positive AChr Myasthenia Gravis. There are different types of MG.



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MEGSTURN's Photo MEGSTURN Posts: 461
3/19/14 10:52 P

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HI....have not been here for many months....

I take vit.D daily....B-12 daily + monthly injections...
they are weening me off the prednisone now...
and we are trying methotrexate....
it seems to be helping.....somedays....
but the exhaustion thing and the double vision is annoying....

had swallowing and walking issues early on.....those are better
also talking issues when really tired...sounded like a drunk...

I gained a lot on the prednisone....hoping to lose during this year I am off and on the methotrexate......tried Imuran but got deathly ill on it....I am one of the 20% who cannot take that. Threw up for 10 days.....ugh.

so....I need to get back to some serious calorie counting and some much needed exercise...it is hard when you are so tired sometimes.....
I am single....have to work....and that is ok....I am grateful that I still can...
but to add anything to an already exhausting day has been difficult....

glad to see you all here....
off to reset my numbers and start again!

Meg

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DEBBIEANNE1124's Photo DEBBIEANNE1124 SparkPoints: (99,650)
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12/7/13 12:09 A

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Thanks Kelly.

What is the monthly injections that you get? Is that a B-12 injection?

I am guessing i'm getting weaker. Wednesday i just finished 3 days of IVIG in the hospital. Well last night was mother/daughter night. Ashley and I went to dinner and then the theater to see the Christmas Revels a beautiful holiday musical. OMG i climbed 3 flights of stairs plus some and back down when we left. I wore out my left leg and it is so sore today and it is just not working. I need to build the legs up.



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KELLYERIN's Photo KELLYERIN SparkPoints: (52,582)
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12/5/13 6:32 P

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Hello MGers,

I also have to take supplements for Vitamin D and B-12 daily and B-12 injections monthly. I try so hard to stay away from the prednisone. It has terrible side effects for me, including the weight gain! I do take it for short periods if I catch a flu or have a more serious crisis. I try hard to eat healthy and exercise even if its in low increments due to muscle exhaustion. It is hard to get the weight off when being on and off the steroids. Don't let it discourage you though! It can happen!! Water aerobics is great for me when I am on the weaker side, otherwise I love Zumba (ZumbaGold moves due to the MG) to stay active.

I hope this helps!

Hugs

"Stand up and finish what you started!"

Kelly


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DEBBIEANNE1124's Photo DEBBIEANNE1124 SparkPoints: (99,650)
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11/30/13 9:12 P

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Hi sharon. I ahve a sister who's middle name is Lee.

Poor guy he's had it rough. My MG pretty much remains in my eyes. I wear a pirates patch over my left eye when i get double vision.

I need to increase my vitamin D levels and make sure my Dr's start monitoring my D Levels as well. Currently they are checking for Liver/Kidney function because of the Cellcept i take.



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SHARON2014's Photo SHARON2014 Posts: 2,672
11/30/13 7:23 P

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Debbie - I changed my screen name to Sharon2024 - Lee is my middle name. My DH did not have to go on the steroids - he held off, increased his Mestinon to 6-8/day and made it through. Once the sinus infection cleared up he did well. Now he only take 2-3 pills/day.

He takes B-12 supplements as well as vitamin D - the doctor monitors his levels.

He is sleeping better - when he was ill (had pneumonia last December) - he was also diagnosed with asthma and sleep apnea - he tried the apnea machine but could not tolerate it. He sleeps pretty well now but when he doesn't he also is weak. He has to rest frequently during the day if he Is doing anything very active.

SharonLee - Michigan
FBI Crime Scene Investigator (BLC27)



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DEBBIEANNE1124's Photo DEBBIEANNE1124 SparkPoints: (99,650)
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11/30/13 6:44 P

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Lee, let me know how your husband does on the steroids.

My arms are pretty weak. Muscles are disappearing. (Upper back of the arms) They are like noodles. We're avoiding putting me on Prednasone because of the diabetes. It's important to take B-12 vitamins. I'm on 1000 mg tabs in morning.

MG has robbed me of sleep. When I get no sleep is when I am Raggedy ann and totally useless.



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SHARON2014's Photo SHARON2014 Posts: 2,672
11/26/13 11:24 P

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Hi Barbara - welcome to the team. My DH has been diagnosed almost 2 years now. He has been able to avoid the steroids though he has come very close - in fact we filled a prescription but he held off until he recovered from a sinus infection and didn't need them.

Keep in touch and let us know how we can support you! Lee



SharonLee - Michigan
FBI Crime Scene Investigator (BLC27)



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DEBBIEANNE1124's Photo DEBBIEANNE1124 SparkPoints: (99,650)
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11/26/13 10:08 P

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Welcome Barbara. it is a pleasure to meet you. if you need any help don't hesitate to send me a spark mail.



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TWEETYKC00's Photo TWEETYKC00 Posts: 83,296
4/25/13 8:32 P

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Well, even though I don't have MG, I can still understand extreme conditions and what it's like being on predisone and trying to lose weight, It can be really hard, especially with the high doses.

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PICKIE98's Photo PICKIE98 SparkPoints: (289,807)
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4/25/13 5:28 P

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So glad you are back.. Debbieanne, our team leader, has been doing IV therapy for her MG. Some of us on this team are friends or relatives of MG patients.
Peruse the threads, ask questions, and most of all, congratulations on your 17 pounds gone forever!!!!!!!!!


SIX YEARS SPARKING!!

Lost 66 pounds!



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BEIRAMAR's Photo BEIRAMAR Posts: 47
4/25/13 3:05 P

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hi all. im about to hit my one year mark of being diagnosed. ive had a thymoma removed with full sternal thymectomy. am weaning off of prednisone very very slowly and would love to get back to a normal weight. ive been using something called the game on diet since nov. with pretty good results so far. 17 lbs down. i really could use some encouragement though from folks who understand mg. this is really hard. i feel bad always venting to my husband. anyhow. i was on spark people a few years back, loved it. had a baby, got mg and now im back here.
thanks
j

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