Urinary Incontinence

[Jodi Enders]

Myasthenia gravis (MG) itself may cause bladder control issues and increased urination. Still, it certainly is a side-effect of multiple MG treatments.

Discuss your mestinon dose with your doctor, including the possibility of adjusting it, increasing the amounts of your other treatments, or beginning a new one.

When dealing with incontinence, you can use adult diapers, pads, or absorbent underwear to go out in public without worry. You can choose what works best for your comfort and lifestyle, whether it’s a diaper, underwear, or underpads for nighttime use.

If you have complete loss of bladder function and need something for convenience during drives or a foolproof way to avoid accidents, you can try incontinence pants with a pee collection device. You can also opt for portable travel urination devices or funnels suitable for all genders. These devices allow you to urinate while seated in your car. Underpads can be used to prevent any spills or leaks.

Having emergency items such as towels and extra clothes in your car can be helpful. Suppose you’re out in public and you’re worried about leaks. In that case, tying a jacket around your waist can help avoid embarrassing situations. Keeping some pre-moistened washcloths in your car or bag is also a good idea to help you feel clean and fresh if you’re dealing with urinary incontinence.

Anyone can experience weak pelvic floor muscles from not exercising them. Pelvic floor exercises can improve urinary incontinence. Consult your doctor to see if these exercises are safe for you.

Bladder accidents can increase the amount of laundry you need to do, consuming a lot of energy. Always be bold and ask for assistance. Using pick-up laundry services or drop-offs can help you save energy, especially if you can arrange for someone else to handle the drop-off and pick-up of your clothes.

Jodi, Team Member

[Sharon Haw]

My neurologist insists that MG has no connection – causation or otherwise – with urinary incontinence so please share any research studies that indicate they might be related. He says that urinary incontinence is controlled by a muscle group that is not affected by MG. For me, what was very occasional light leakage dramatically worsened just before and after my MG diagnosis in 2019. I don’t think Mestinon made it worse for me but I was only on it for a few months. It has continued with Cellcept. I do pelvic floor exercises my physiotherapist gave me which help but I’ve noticed that on days when I’m really active (i.e., babysitting my granddaughter), urination increases to like 20 times/day and is difficult to control. Worst is the frequent UTIs due to being immune suppressed, which are extremely sudden, painful and progress rapidly to not being able to leave my house due to lack of control. My family doctor won’t prescribe antibiotics before an infection, even though I get them like clockwork, so I didn’t take the last 2 pills of one prescription and kept them for the next infection so I could at least start treatment immediately and slow the progression. I get UTIs 2Xyear, sometimes 3.

[Kent Estes]

Your experiences are not unique in dealing with your neurologist. My neurologist said my incontinence was not related to the myasthenia. My urologist says it is. Realizing the uninary sphincter is a voluntary muscle it makes sense that it is affected by the disease. The most important thing is, what are you experiencing? Now, how to deal with it? Diapers (I know, not a name we want to use) is the easiest solution. I wear two… a cheaper one on the inside and a Depends on the outside. Easy to go into the restroom stall and “rip off” the inside one and bingo… you have a fresh diaper without removing shoes and slacks/jeans in a public restroom. A more permanent solution is an Artificial Urinary Sphincter. An internal, surgically implanted device. Google it AND talk to your urologist. Granted surgery has risks for us but, worth a consideration. Good luck.

[Sharon Haw]

Thanks and it’s helpful to hear that all neurologists are not on the same page. It sounds like my next step should be a referral to a urologist.

[Jay]

I also questioned my neurologist. On my first query, he said it was unrelated. I was getting that a lot at the time. However, I persisted and he eventually said that there were symptoms not on the “official list” that seemed to be experienced by an increasing number of patients. Incontinence and problems associated with bowels were possibly associated. It was then that I started Vyvgart and I saw improvement. I’m on Vyvgart for 4 weeks and and then I have 27 days off and start again. I notice that the bladder problems begin to re-occur around day 15 of my break. It never gets as bad as it was when I wasn’t taking Vyvgart, but I do notice a difference when I have gone without the drug for a couple weeks. As of this writing (9/24), I’ve been on Vyvgart for 13 months and have seen a very significant improvement in my bladder control.

[miche]

Just starting my second month of Vvygart and notice some improvements with the bladder, maybe less urination. That would be great if I don’t gain weight as a result. I keep a urinal next to my bed at night as I get up once and last night I slept through!

[Stanley Martin]

I am an 80-year-old male and with myasthenia gravis and I too have frequent urinary bladder leakage when I stand up don’t have the problem when I’m laying down or sitting up now when I go out, I have to use a pad or if I’m gonna be gone for the whole day I’ll put on depends or the local store brand of male underwear. Never had this problem in 7577 years Until I was diagnosed with myasthenia gravis but then again I did have a colon surgery and now have a colonoscopy in a bag on and taking so many medication’s so damn frustrating. Usually when I get up, I’ll go once and then two minutes later I’ll go back and pee again .

[joell]

I’ve had problems with incontinence for the last several months. I was diagnosed in January with MG and have taken Mestinon since then. My MG symptoms increased in July and so did the Mestinon dosage. My lack of bladder control also worsened. My problem is that as soon as I think I have to pee, I better get to the bathroom or I’ll begin to leak. I wear a pad or diaper every time I leave the house. My neurologist agrees that this is due to a combination of MG and the Mestinon.

[mik]

I’ve been off the mestinon 3 months. I’m on 15 prednisone and 1000 cellcept. Still experiencing urgency incontinence for lack of a better description.

[JOHN A]

I’m 82. Two months before I was diagnosed in Sept. 2022, I experienced the droopy eye and double vision and a significant problem with incontinence. (By the way this all started exactly one month after having Covid if that means anything.) Neurologist put me on Mestonin which took care of the eye problem but didn’t seem to affect the incontinence either way. I’m down to only taking one 60mg in the morning. I also have no issue when sleeping but prolonged sitting does result in leakage. I’m dealing with it by normally wearing the padded underwear and augmenting that with the protective pads when significantly active, like golfing or crawling under an antique car I have, so I can change pads without taking off the underwear. I’m investigating Axionics which is an implanted device to help control the Sacral nerve that is involved with bladder control but not sure yet about the system and whether to pursue it. It might be the answer I’m looking for. Neurologist and Urologist says go for it.

[Rocky]

Thanks to all who responded to my initial posting. Having recently been diagnosed it is comforting to note that there are so many caring people out there. I met with my neurologist and he attributed the urinary issues largely to Mestinon. He prescribed Glycopyrrolate to help alleviate the symptoms. Hopefully it will be effective and not come with its own side effect problems. Has anyone had any experience with this drug? Thanks.

[Michelle]

Bladder problems can be a result of the MG itself or the mestinon. What your describing sounds more mestinon related. It can urgency issues. MG itself usually causes nocturia ( frequent need to pee overnight) or overall incontinence .

I researched this myself as I noticed about 40-75 minutes after I take my mestinon I have to go and go now. I noticed also (since I drive for my job longer distances) when sitting in my car it doesn’t bother me as bad, but the minute I get to my location, boom! So I try to time my medicine accordingly, to explain it from a physiological side.

“Acetylcholine sends signals to your brain that trigger bladder contractions associated with an overactive bladder”

Best of luck.

[Cathie]

I either have or do not have MG. Why? Because my LRP4 apparently is different than other forms. I have bladder problems too. When I rise from the recliner I sleep in, my bladder dumps entirely. I am miserable from neuropathy I also developed and blood pressure I cannot get under control. I was weak and in pain and taken to a Dallas hospital by ambulance. Two days earlier BP was 173/112.

I was forced to leave the hospital today, because they could find nothing wrong. I am so worn out with all of this. So, I sit wondering if I will have a heart attack or a stroke.

I am trying so hard to make it, and then this… No BP med works, so scary… Hate the urinary problem, but BP issue is terrifying. At 80, ALWAYS lifelong 110-115/60…

[michail]

I never had any ussues with MG and urinary problems, and I doubt that there could be any connection, nor have I felt any connection with Mestinon. However, if you start taking prednisone (20 mg or more), be prepared to run to the bathroom starting from 4 hours after taking the pill and for the next 4-6 hours, this is a very pronounced effect in my case.

[MGisreal]

Hello,

I was diagnosed with MG 5 years ago and one of the things I remember having just before being diagnosed was urinary incontinence. It was always as I stood up, this was before any meds for MG. I have it occasionally now just before my IVIG treatment when I’m really tired.

[GREG M CLARKE]

I’m 76 and was being treated for BPH which many old men have. The drugs encouraged urination. One of the most frequent symptoms of Mestinon is “increased urgency and frequency of urination. I stopped taking BPH drugs (Flomax etc.) with some improvement. My Urologist prescribed Gemtesa which helped ( but it’s expensive). I still have bouts in the early afternoon of having to go every 30 minutes. I’m lucky not to have problems at night.

I’ve also learned that constipation puts pressure on the bladder, so I take a good probiotic to keep things moving. For me, 3-4 dried apricots do the trick.

Also, there are pads available. Slim guards, heavy duty, and full briefs. You’ll get over being shy at the drugstore. Many times the pads are dry at the end of the day but they give you confidence. I always put on the full briefs when flying. You never know when you’ll get stuck in a lengthy landing pattern.

You gotta take the Mestinon and deal with the incontinence.

[Andy Coyne]

I have had this issue, it’s caused by the Mestinon. I have found propanthaline (Pro-Banthine) very helpful in returning normal bladders control. It also helps with the “tummy” problems as well. Only issue is it initially causes a very dry mouth.

[Trish]

Hi: I too have leakage when I take Mestinon. The more Mestinon in the day, the leakage increases. When I don’t have to take it, I don’t have a problem. My neurologist confirmed it is the Mestinon side effect, not the MG, for me and my own symptoms support her conclusion. I was diagnosed in 2019 with seronegative MG, mostly bulbar symptoms, and immediately had a thymectomy which helped a lot. I am not on any other medications except Mestinon. I refused steroids because I have thinned bones. To combat the leakage issue, I do exercises, and also try to proactively find a bathroom before I even think I need to when I am out of the house. Keeping an empy bladder helps. There are side effects to Mestinon – other major side effects I have are extreme muscle spasms and muscle spasticity, and excess saliva. But I have decided those are a lot better for me than steroids.

Good luck

[MikeS]

HI, Rocky. I wish you luck as you start navigating the MG journey. Always keep in mind that, for MG, what works for one person may very well not work at all for another. Treat every recommendation not as advice but as a suggestion, i.e., “It worked for me so maybe it might work for you.” With that in mind, I have control issues similar to yours where, for example, if I stand up I’ll get a short, uncontrollable leakage of pee. I don’t have the problem when I’m between flare-ups and thus off mestinon, so I’m apt to attribute the lack of control to the mestinon. When I am in a flare-up I will, each morning, put a Depends Shield for Men inside the front of my briefs. It will catch any dribbles or drips and prevent a wet spot on my pants. It’s thin and comfortable and works all day.

[Mami]

I also had sudden urinary incontinence issues a few years after I was diagnosed with GMg in 2018. I have taken Mestinon, Imuran, Cellcept, IVig, Restigo and now I am taking Zylbrisq. I am doing a lot better. I have come to accept the fact that your system that relies on muscle activity will be affected due to GMg and not the medications you take. My oncologist/Gynecologist prescribed me Myrbetrisq, which helped control the muscle movement of my bladder. I no longer suffer from that annoying issue.

[eliza]

Hi Mami,

Would you be willing to share what your experience was with Rystiggo as well as now with Zibrisk ? I am considering starting on Zilbrisk. I stopped the Rystiggo after a massive adverse reaction in the pause. Would love to hear if you feel like sharing,

warmly,

Eliza

[Andy Seles]

I, too, have urinary incontinence and have never figured out whether to attribute it to a botched catheter insert during my thymectomy or my BPH surgery shortly after or Mestinon or MG itself. Kegels have provided minimum relief thus far, so I use Depends pads and have a mapquest of bathroom locations ingrained in my brain before leaving home. Before taking any medications, be sure to check to see that they are not contraindicated for MG. Propanthaline (Pro-Banthine) was mentioned in this thread, however, a quick Google search suggest it is contraindicated. I’ve found that several doctors I’ve encountered can be very flip about MG.

[Bambilin]

I took imipramine which calms your bladder and strengthens your sphincter muscle. Worked great but made me constipated so i stopped taking it. You might try it. I wear disposable briefs.

[Lor]

I have the same issues with urine leakage.