Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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How to survive period before meds work?

ajkmom3
ajkmom3
I was diagnosed via blood test approximately a month and a half ago. A month ago I had thymoma surgery removing thymus, benign tumor, and left frenic nerve off of lung. After surgery had few problems swallowing, until now. I have lost 25 pounds, have tried pyridostigmine, which worked for a bit and then I had diarrhea so stopped. Now I am wondering if I was dehydrated more than side effect. Neuro put me on prednisone 60 mg two weeks ago. That hasn't kicked in as I just got home from 3 day stay at hospital for IVIg treatments. Had relief soon after but short lived. Now I've been home from IVIg treatment day two and I can hardly swallow. Took 2 hours to get prednisone tablets down. I also have hypothyroidism. How is one to survive before anything starts to work? I am trying to be positive and patient but I am at my wits end. I'm scared, my husband and three kids (16, 12 &8) are freaked out. We farm and my husband needs to be in the field. The parents are trying to be helpful but is all very stressful. Any suggestions? Will I be hooked up to an IV for the next 3 mo, 6 mo, year? Hospital is an hour drive away. Help and thanks.
jessicadrummond
jessicadrummond
It sounds like if you are not responding to medication, you should be hospitalized. Especially if you can't get the medication down. I've been hospitalized twice in the past two months with extreme weakness. Did the meds work and they stopped working? I found that my meds wouldn't work when I was fighting a cold or illness. Sorry you are going through this, when I have bad days I worry that this is my life from now on and it scares me, but then I will have good days and it balances out. Hope you get some answers! At the very least, get ahold of your neurologist!
limpnoodle
limpnoodle
Try adding the mestinon back in small doses. Start with maybe a quarter tablet and see if that helps and is tolerated. If not, stop. If it helps, continue to titrate the dose up till you can see results without too many side effects. Of course, never exceed your daily prescribed dose.
You can crush it and put it in applesauce. I've had a many a dose like that when unable to swallow pills. You can get a crusher at a drug store or most places like Walmart. If not, crush between two spoons.
The intestinal reaction usually goes away after a week or so.
If your swallowing remains that severe, you're probably going to have to go to the hospital, whether you want to or not.
I feel for you because I've been in your exact predicament. Feel better.
ajkmom3
ajkmom3
Thanks. I'm headed to ER now. No neuro on call on the weekends so who knows what will happen. I am really thinking I would rather be able to swallow and have diarrhea than not swallow at all. They started me on pyridostigmine at 1/4 tab 4 times a day for first day then 1/2 tab 4times next day, 3/4 tab next day to full tab on last day 4 times a day. I had my period too so I don't know if that threw things off too or what. Can you take pyridostigmine and prednisone together or just one at a time? Thanks but still in tears at moment. And I thought the thymoma would be the worst part. Who knew.
xmas25
xmas25
Most pred is in am since it may keep you awake.I assume mestinon is with abit food. The muscle twitching which causes diarrhea usually subsides.I'm hoping for a resolution of it all soon for you. Finding your mix of meds etc does take awhile since our bodies are ever changing reassure kids it'll all work out.don't forget you just had surgery!! Ask if you should do 1/4 tab dose for 1week etc. I had twitching so Dr advanced very slowly. Take care
ajkmom3
ajkmom3
Got admitted and now doing 3 more days of IVIg. Won't talk to neuro til tomorrow. Really don't know what to think.
xmas25
xmas25
Just take a deep great help and know this is kind of the norm for new mgers.it's lots of trial and error and reSt as much as possible (said by a 63y who has the time)I'm sorry you needed to get admitted but it's the best place for now. Between thyoma, stress, not feeling good at all,kids,etc you have alot on your plate! Take care and ask those questions in your mind. Also start keeping a log of life, meds,reactions Good and bad,etc. It's soooo easy to forget but it is essential for Dr to help you.
jessicadrummond
jessicadrummond
Glad to hear you are somewhere safe! Try to rest and take it easy! I also noticed I got weaker around when I was on my period, but this last time I was fine, so not sure if it impacts it if you are already borderline weak or if it's just a strange coincidence. Both times that I was hospitalized I was also on my period.
HappyGuy007
HappyGuy007
Many find it necessary to take Mestinon with food to avoid gastric distress. Toast, or crackers work very well for me personally. Once your swallowing improves, you may try this. ....Many have been prescribed imodium for the diarrhea with good results. Limpnoodle's advice above is golden...
ajkmom3
ajkmom3
Thank you all for your support. This is a condition that sure can test ones faith, and patientce. I was able to get 1/4 tab of mestinon down. Praying something starts to work. Hugs to all with each of your struggles.
xmas25
xmas25
Hope things are improving
ladylife
ladylife
Terry, hold on to your faith! It will sustain you! Remember that a merry heart is like a medicine. Find whatever you can for which to be thankful. Look for the simple joys in life and focus on today and the blessings you have!
I started on 1/2 pill of Mestinon 3 times a day for a couple of months. Terrible gas and diarrhea. Every time my Mestinon changes (dosage or frequency) I have horrible gastric issues, but the result is worth offending everyone around you and running desperately to the toilet at any given moment. After approx 6-8 months, the gastric issues settled down. I always eat something with the medication.
This forum has given me great comfort in knowing I am not alone, giving me more accurate, in-the-trenches information than I could get anywhere else, and giving me much support when no one around me (including medical professionals) understood what was happening to me or what to do to help me.
Keep checking back with us. We are concerned. We care. I will keep you in my prayers!
Barbel
Barbel
When I started taking mestinon, I ate like I was recovering from a stomach bug. I also took gas x, and made sure that I took the mestinon with food. I avoided fresh veggies, and spicy foods. I could introduce those foods back into my diet gradually as my system got adjusted.
ajkmom3
ajkmom3
So I came home from 2nd visit to hospital & dr upped mestinon to 1/2 tab 4 x a day. I took this morning and have been nauseated/vomiting since. Dr now says she is taking me off mestinon, getting me xofran for nausea and I start cellcept tomorrow. What fun side effects does cellcept offer? Didn't get to talk to dr, just the nurse who relayed info. I really need to get something down. I've been trying to sip Gatorade while waiting for xofran prescription to be filled. I hope this works. Thank you all again for your support. It has been priceless. You are all angels.
xmas25
xmas25
But cellcept usually takes months to work.has anyone suggested prednisone. Usually start low and work up to dose that helps you. Yes short term side effects and maybe long term but it seems you need something faster acting than cellcept! Are you able to swallow the previous prednisone again yet? I hope things turn around quicker now for you .I know you live out in the country but is there any university h
Hospital you can get to? Any state support group (look in mgfa.come for info) maybe someone can help you find Dr in area with alot of experience . I worry about you young people going through such stress to get it under control.have faith it will
ajkmom3
ajkmom3
Well, I haven't taken any mg meds since 1/2 tab mestinon yesterday morning and I can still whistle. Very nauseated which I think is due to whole hospital not eating tired issues. Dr had me on prednisone and took me off that. Now she wants me to start cellcept tomorrow evening after I haven't vomited for 24 hours. She said we would discuss IVIg every 4 weeks with the cellcept at my next appt on Friday. I am looking for a second opinion because I am loosing faith with this doctor. Talked to my insurance company today and got a patient care advocate. Anyone with suggestions of neurologists in Iowa, Wisconsin or Illinois I'm open to suggestions. I think the mestinon would work if I had food in my system and I wasn't starting it at such a deficit. And if they would have told me to take it with food!