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Living with Polyneuropathy CIDP, GBS, & CMT

Incontenance

Unfortunately, I have autonomic neurapothy and developed gastric issues(seems I’m not digesting my food, waiting to see doc), I also developed urinary incontenance(I leak , a lot).
I went to a urologist who did an acupuncture therapy where they put a needle in the inside of my ankle and attached an electrode to it and sent pulses to the tibial nerve that sent messages to my brain to try to ease the contractions.
Unfortunately, it worked the opposite way, it made the contractions more.
Granted, before I couldn’t tell I had to go, I had to go every couple hours on my own, now I can feel the urge etc. just can’t stop the leakage, hav done kegals etc.
My neuro said I may not get over this, I’m only 42. I’m receiving IVIG every 3 weeks, I’m getting weaned off lyrica due to the extreme weight gain and the swelling of hands and feet. Neuro put me on gabapentin and is also weaning me off baclofen due to it can be causing my bladder to spasm also. I’m also starting retuxan at the end of the month.
Does anyone have any suggestions on how to deal with this?

Other than what the docs are trying, I would say to avoid things like caffeine, nicotine, etc.(anything that can stimulate the bladder to contract). Also, avoid irritating beverages like highly acidic drinks (cola, etc). Hope you get to doing better, soon!

I quit soda, chocolate, citrus drinks etc. I hope so too!

Can you tell me why you are going on retuxan, it has been suggested for me also. (I have cidp and anti-mag) Have you tried yoga for the urinary incontinence it has helped me strengthen my core. Stay Strong Peace Nancy

It helps the IVIG last longer and suppresses the immune system. I cannot do yoga my body is still not right yet. The urogynecologist said that I’m fine in that area, it’s the autonomic system going haywire due to cidp.

I"m doing the opposite and cutting back on how much I drink. I was having problems at night and completely losing control. I saw a urologist and he told me I shouldn't be cutting back on the amount of fluids and I already new that but I can't wear those adult depends and have that blanket underneath me because I wake up so hot and sweaty that I might as well have just lost control and still had to change.

Seeing how many people still have problems even while have treatment scares me because I was told once I started treatment these symptoms would go away. I am also on baclofen. How do you know if it is making your bladder spasm?

I don’t wear depends I use poise, I stop drinking at 8 and only have some at 10 with my nightly meds. You shouldn’t cut back on fluid intake due to it can irritate the bladder even more.
Any muscle relaxer will relax your bladder, it’s already having spasms and that combination makes for some irritation.
If your nerves are damaged in that area it will take time to heal, I’m still learning my triggers.

Gosh I'm so sorry...I haven't experienced that, but I do know I'm only 37 and this disease gives me the body of a 77 year old. Have they tried any thing simply related urge incontinence like Flomax, or something similar?

They had me try something in that class and unfortunately it would not allow me to use the restroom, I would leak still. I also tried the acupuncture that the needle goes into the ankle where the tibial nerve is and had the electrode for 30 min once a week for 12 weeks, did not work.
So, it’s just part of the disease among other things that I unfortunately have to endure.

I don't have incontinence but there is something wrong with my bladder. I either urinate too much or I can;t tell if I need to go. Do you have that problem? I don't go to the bathroom at night because I don't drink at all. So, did you say that before you had incontinence you couldn't tell if you had to go?

Paula,

You are a brave and wonderful soul for having the courage to post about incontinence, and your bravery has brought lot of people into the discussion, which is really good to see!

About the incontinence, I've got it, too. I see a nephrologist, neurologist, internist, hematologist, and various other MD's and they all agree on one thing (which is a small miracle!)...that my incontinence is very likely caused by my autonomic neuropathy.

My PSA levels are 100% normal, I have no benign prostate disease, etc.. but things just don't stop the way they used to, and it's disconcerting, because as a man, we don't have the selection of absorbants to choose from that ladies do. I've been able to avoid Depends, etc.. because I've got a strange blend of autonomic nerve damage, in which I cannot feel the pressure or need to "pee", but when I do go (not very often due to autonomic kidney damage), things feel like they've stopped, but, well, they haven't. I've tried "Man-Kegels", to no avail.

I guess when the nerves are shot, the signals just don't get to the intended "phone number" in our bodies.

I'm sorry the MD's don't have an immediate answer for you, but I presume your lab work and urinalysis, etc.. have come back normal, no infections or kidney stones, etc?

And about the Rituxan...Confucius say "Don't use a canon to kill a mosquito".

You didn't mention whether any of your doctors have performed autonomic/neurological tilt table testing to determine the severity of your autonomic neuropathy, or whether any of them have recommended ways to control your autonomic issues, such as "tried and true" drugs like those mentioned on the Mayo Clinic website. I've left out other autonomic symptoms and treatments mentioned there, for the sake of space!

Medications that decrease overactive bladder. These include tolterodine (Detrol) or oxybutynin (Ditropan XL). Possible side effects include dry mouth, headache, fatigue, constipation and abdominal pain.

Just something to think about before going "off label" with Rituxan, here is some info about it:

Rituximab injection is used alone or with other medicines to treat a type of cancer called non-Hodgkin's lymphoma (NHL). It helps the immune system destroy cancer cells. Rituximab injection is a monoclonal antibody.

Rituximab is used together with fludarabine and cyclophosphamide to treat a type of cancer called chronic lymphocytic leukemia (CLL).

Rituximab is used together with methotrexate to treat the symptoms of rheumatoid arthritis. It helps to keep joint damage from getting worse after at least one other medicine (eg, adalimumab, etanercept, or infliximab) has been used and did not work well.

Rituximab is used together with steroids to treat granulomatosis with polyangiitis (GPA or Wegener's granulomatosis) and microscopic polyangiitis (MPA). These are immune disorders that cause blood vessels to be inflamed.

I don't see anything about CIDP or autonomic neuropathy, but the again, I haven't looked at any peer-reviewed studies. The side-effects (known) are kind of scary to me, though:

It's a long list, but I think it's worth reading and having a LONG talk with your doctor about! -

It is very important that your doctor check your progress at regular visits to make sure that this medicine is working properly. Blood tests may be needed to check for unwanted effects.

This medicine may increase your risk of developing infections (viral, bacterial, or fungal) during or after treatment with this medicine. These infections can be severe and lead to death. Some patients have developed low levels of certain antibodies in their blood for a long period of time (longer than 11 months). Some of these patients with low antibody levels developed infections. Avoid being near people who are sick or have infections while you are using this medicine. Wash your hands often. Tell your doctor if you have lupus or if you have any kind of infection before you start using this medicine. Also tell your doctor if you have ever had an infection that would not go away or an infection that kept coming back.

This medicine may cause a rare and serious brain infection called progressive multifocal leukoencephalopathy (PML). The risk for getting this infection is higher if you have rheumatoid arthritis. Talk to your doctor about the benefits of taking this medicine and the risk of this infection. Check with your doctor right away if you are having more than one of these symptoms: vision changes, loss of coordination, clumsiness, memory loss, difficulty speaking or understanding what others say, and weakness in the legs.

Call your doctor right away if you start to have a cough that won't go away, weight loss, night sweats, fever, chills, flu-like symptoms (such as a runny or stuffy nose, headache, blurred vision, or feeling generally ill), painful or difficult urination, or sores, ulcers, or white spots in the mouth or on the lips. These may be signs that you have an infection.

While you are being treated with rituximab, and after you stop treatment with it, do not have any immunizations (vaccinations) without your doctor's approval. If you have rheumatoid arthritis, non-live virus vaccines should be given at least 4 weeks before receiving this medicine. Rituximab may lower your body's resistance, and there is a chance you might get the infection the immunization is meant to prevent. In addition, other persons living in your household should not get live vaccines (eg, nasal flu virus vaccine). Try to avoid persons who have taken live vaccines. Do not get close to them and do not stay in the same room with them for very long. If you cannot take these precautions, you should wear a protective face mask that covers the nose and mouth.

Rituximab may cause chest pain, fever, chills, itching, hives, flushing of the face, rash, troubled breathing, or swelling of the face, tongue, and throat within a few hours after you receive it. Tell your doctor or nurse right away if you have any of these symptoms.

This medicine may cause a serious type of reaction called tumor lysis syndrome (TLS). Your doctor may give you a medicine to help prevent this. Call your doctor right away if you have a decrease or change in urine amount, joint pain, stiffness, or swelling, lower back, side, or stomach pain, a rapid weight gain, swelling of the feet or lower legs, or unusual tiredness or weakness.

Serious skin reactions can occur during treatment with this medicine. Stop using this medicine and check with your doctor right away if you have blistering, peeling, or loosening of the skin, red skin lesions, severe acne or skin rash, sores or ulcers on the skin, or fever or chills while you are using this medicine.

Stop using this medicine and check with your doctor right away if you have any symptoms of liver problems. The symptoms include skin and eyes turning yellow, dark brown-colored urine, right-sided abdominal or stomach pain, fever, or severe tiredness.

This medicine may cause serious stomach and bowel problems, especially when used with other cancer medicines. Check with your doctor right away if you start having stomach pain while being treated with this medicine.

Wishing you well, and that your doctor(s) can find a way to help your incontinence without having to put you on Rituxan.

Dana,
I was shocked that this thread is still active, it’s been awhile.
You are correct in that I couldn’t tell that I had to go at first, it took a good 5-6 months until I was able to. On a side note, although I can tell now, I still cannot “feel” down ther, tmi I know, but it’s important because that’s a main part of my nerve damage and autonomic damage. I no longer sweat or grow hair on my legs etc(I know, right?
You still need to drink fluids or your bladder will be irritated, rule of thumb is to stop a couple hours before you go to bed, I stop at 4 and only drink what I need to when taking night meds.

Migratory Coconut,
Thank you for calling me brave, to me, I was desperate at that time.
That year they tried everything(after doing the urodynamics test)Medicines that were supposed to help, which made me unable to “go” but still leak, tibial nerve stimulation/interstim which both screwed up my signals more.
Last year I found a new urologist and she’s great! She has me on a myrbetriq/Botox combination that has helped a great deal(the leakage hasn’t stopped all the way, but it’s decreased so much) I’m so far ok with it.
Being a man with it must be frustrating because of the choices you’re limited to! The one thing my urologist explained to me is you always make sure your bladder is as empty as you can(I take my time) on a previous post to Dana, I explained that I cannot feel down there. I can feel pressure at times, but I cannot feel if I’m empty. Maybe take a little longer for you to make sure?
You’re confusing the retuxinab dosage with what cancer patients get, for CIDP it’s just the retuxinab and Benadryl/steroid combination. Just like IVIG, the Benadryl and steroid combination prevents side effects(they are infused just like the retuxinab. There is no side effects like losing hair etc.
primary use for CIDP is to lower the immune system(not for bladder) just like if the Neuro were to give you the meds to. Just in infusion form(I can’t take oral steroids etc of that class) neurologists only like to do the 4 weekly doses. You would still be getting IVIG. Long story short, it did not work for me, I did not go into remission.
I hope that clarifies the retuxinab use for you and hopefully your urologist will think of something for you!