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Living with Polyneuropathy CIDP, GBS, & CMT

Privigen and urinary problems!

Hello everyone my name is kitze. i am 33 from pennsylvania and was diagnosed in april 2012 with cidp. here is my concerns and i am just looking to see if anyone else has the same problems. I firsted started on plasmapreisis in march 2012 when they thought i had gbs. so in april when i got worse i was diagnosed with cidp and started on ivig with privigen. I did well with it. now i get it every three weeks for three days. since this all started i have been having problems peeing. like not being able to hold it or peeing like i had a pea for a bladder, but within in the last two months. i have gotten to the point that i pee myself all the time and it hurts really bad when i pee. i had my pee tested and they said i had an u.t.i. so i took all my meds for that hoping it would go away but no luck, :( Now the pain while peeing normally happens like 4 days after i start my treatments and last for like 2 or 3 days. I have talked to the neurologist about this and he says it has nothing to do with cidp, but i think he is wrong. So i am asking if anyone has problems similar to mine please contact me so i can talk to you.. thank you for reading and hope its a good day for you!!

I have CIDP. Just recently diagnosed with UTI and started Cipro (antibiotic). So far the symptoms have gone away. But this is my first UTI since being diagnosed with CIDP. Hoping it is just a one time UTI and that it will not come back. What antibiotic did they use? Maybe you need a different antibiotic to treat the UTI. Sometimes they are very persistant and requite repeat antibiotics. Sorry I can't be of more help. I don't have pain when peeing. I did have some mild burning but it has gone away with treatment. I am hoping my UTI is not CIDP related and just a plain UTI.

chirpybirdy they had put me on cipro also. they tested me again for uti waiting on the results to come back. hoping that its just another uti.

Kitze,

If it's not caused by CIDP than why does my Neurologist ask me about my bladder at the beginning of every appointment? It has to be related somehow.....

I found this in an artical i was reading on CIDP. It talks about rare instances when CIDP affects the bowel an bladder.

"Examples of less common symptoms include facial or eye muscle paralysis caused by facial nerve damage. Occasionally, the patient is also affected by autonomic nerve damage, impairing blood pressure regulation or bowel and bladder function. In very rare cases paralysis of the respiratory musculature makes ventilation support necessary."

http://www.socialstyrelsen.se/rarediseases/cidp

I was doing the same Chirpybirdy... I knew I remember seeing something about bladder issues and CIDP.

http://www.manchesterneurophysio.co.uk/chronic-inflammatory-demyelinating-polyneuropathy/effects-of-cidp.html



chirpybirdy said:

I found this in an artical i was reading on CIDP. It talks about rare instances when CIDP affects the bowel an bladder.

"Examples of less common symptoms include facial or eye muscle paralysis caused by facial nerve damage. Occasionally, the patient is also affected by autonomic nerve damage, impairing blood pressure regulation or bowel and bladder function. In very rare cases paralysis of the respiratory musculature makes ventilation support necessary."

http://www.socialstyrelsen.se/rarediseases/cidp

It must be connected to kidney or bladder trouble, because every time I take the privigen treatments my BUN and creatinine levels go up and I start urinating on myself. And the worst thing is that I don’t even realize I’m doing it until I’m completely wet. I feel like I am holding it pretty good, but it just leaks out. God bless you with these problems you face.

Hi Sweetheart,

I was just going to state the same thing in my research of symptoms i also read that the nerve endings can cause urinary and bladder problems the others gave you some really good links to follow. Also have you been tested for diabetes? When your blood sugar goes extremely high it can cause pain when uritnating and lots of uncomfortable pressure feeling down there. Just a suggestion,mine does this occasionally but i havent started my IvIg treatments yet. Big hugs..Amy

thank you everyone for the responses. i have been tested for diabetes and it came back good. I am gonna print out the articles and show them to my neuro. docnuclear i am the same way. i know i gotta go but by the time i get there its running down my leg. its very depressing!

My doc also asks me if I have any urinary or bowel problems. (I am fortunate enough not to have any.) When I asked why, he said that in some cases the CIDP can cause you to be incontinent. Apparently, the nerves that control these things can also be affected by the CIDP. This squares with what ChirpyBirdy says above.

But: if this is the issue, it seems like IVIG should help, not hurt.

I would make double sure that the UTI is wiped out. Not all antibiotics work on all infections. I had a sinus infection that dragged on for weeks because my family doctor was prescribing the wrong antibiotic. When he finally agreed to let me see an ENT (needed a referral in those days), the ENT was rather upset with the treatment I had gotten. A few days on the 'right' antibiotic, and I was fine.

Good luck,

Bill

kitze, and others,

I know the CIDP is related to bowel & bladder problems. I've living it. I was diagnosed with neurogenic bowel and bladder. That means the nerves that control my functions are dead. Luckily, my sphincter muscle is still working, but I still require absorbent underwear. Comes with the CIDP territory. If your Neuro isn't asking you about your bowel & bladder functions at some point during every visit, he needs to be educated. I do find that I have fewer issues with leakage for the first 2-3 weeks after my IVIG. If you're finding that you are having issues because of the treatment, you should try to get one treatment of IVIG without the privigen and she if that helps.

Dave Q

Hi Kitze,

I did not have a very good time with ivip myself just a few months ago. I went into emergency one night after my 5 days of treatment of ivig I was scared as hell and my lower back was hurting pretty bad. I was peeing blood, not a lot but there was quite a bit when I wiped, and a little in the bowl. I had a total hystorectomy 18 years ago so it was not that. They sent me home and told me to see my doc a.s.a.p. so I did! I got the same cipro for an infection and I went to my neuro the next week and he said he did not doubt that it was from the idip and he thought it was coming from my kidney's. I did not go to a urologist which I have yet to do after my ankle heals up from falling and breaking it. The bleeding has stopped as far as I can tell (the doc's have the microscopes), but my lower back has not stopped hurting...

Good luck to you and Gods Blesssings,

Pauline

p.s. If I can help please feel free to contact me...

thank you everyone. i am willing to keep in contact with anyone. it can get really depressing at times. its nice to talk to others with similar problems. also please keep the information coming and i will return the favor on anything i find. thank you again everyone!

Pauline,

Sorry to hear about your problems with the IVIG. It's one of those things. Drs. don't know why it even works, or why it works for some people and not others. I hope you find a safe route to controlling your CIDP in the near future.

Dave Q

Pauline said:

Hi Kitze,

I did not have a very good time with ivip myself just a few months ago. I went into emergency one night after my 5 days of treatment of ivig I was scared as hell and my lower back was hurting pretty bad. I was peeing blood, not a lot but there was quite a bit when I wiped, and a little in the bowl. I had a total hystorectomy 18 years ago so it was not that. They sent me home and told me to see my doc a.s.a.p. so I did! I got the same cipro for an infection and I went to my neuro the next week and he said he did not doubt that it was from the idip and he thought it was coming from my kidney's. I did not go to a urologist which I have yet to do after my ankle heals up from falling and breaking it. The bleeding has stopped as far as I can tell (the doc's have the microscopes), but my lower back has not stopped hurting...

Good luck to you and Gods Blesssings,

Pauline

p.s. If I can help please feel free to contact me...

Shortly after starting IVIG back in 2010 I ended up with a mean UTI that eventually evolved into prostatitis. I had never had a UTI prior to that. It took about six weeks of Cipro to clear it up. It has recently returned.

I started IVIG in March this year. I have had previous years of problems with UTI'S . Make sure your doctor does a culture and sensitivity when testing your urine to find the appropriate antibody to treat your infection. I was referred to a Urologist and was found to have several large kidney stones that were thought to be the source of the problem. Once they were removed I haven't had a problem.(knock on wood) I can see if you have nerve damage with your ureter it could cause leakage, I have never heard of leakage causing infections but I am not a professional. With all the water we need to drink when getting infusions you would think this would decrease UTI'S. You are drinking buckets of water aren't you? Good Luck!

Thank you so much for sharing. this will help so many people.

Never had similar problems even though I have been on IVIG for nearly 4 years.
Glen

Was just told yesterday they are referring me to a urologist thankfully. so hopefully i will find out something. will keep everyone updated incase something like this happens to them. Thanks again everyone for the information.

Hey all!

When I was on IVIG my back hurt all the time!!! I did have one UTI during the 4 years I was on IVIG. Make sure they keep an eye on your kidneys. My function was not great on IVIG, but I went on Subq at the end of Dec. The back pain faded away and kidney function is ok now. The subq seems to be a more stable infusion, and the kidneys don't seem to take as much of a whallop (beating, stress) than when you are infused with the IVIG in such heavy doses.

I am in PA too, and am wiling to talk to anyone about this disease. I feel so alone.

Be thankful we have all found this site!!!! Praying for all!

Chris