News:

New to the boards? Start with "Welcome! What you need to know as a member of this community"

Main Menu

over active bladder

Started by katie1111, May 22, 2018, 02:54:47 AM

Previous topic - Next topic

katie1111

I have been dealing with an over active bladder for many years.  The problem is getting worse.  My urologist says that patients with sjogrens are very difficult to treat as they don't respond well to the medications.  He is recommending botox injections to the bladder.  Has anyone tried this?

Katie1111

lizk

Hi Katie1111,

Aw, I'm so sorry to hear this. Over active bladder can really be disruptive. I, too, suffer from this. I'm up at least 3x a night to use the bathroom, never mind my frequent use during the day.

I saw a urologist to see if there was anything to be done. I kept a journal that detailed my frequency and I also measured my output. She said that I have a very small bladder and that part of this is conditional. Now I try to go longer in between my bathroom trips, but it's harder at night.

There are medications. She gave me Myrbetriq, but I haven't tried it yet. There's no generic and I honestly don't want to deal with a huge cost. Also, she mentioned that some of her patients dealt with a headache while adjusting to the meds. I believe there's another type of medication, but it can also constipate you.

I do not know about Botox, but the doc did mention it was an option. I'm sure others here have tried it and will share their experiences.

I hope this helped a little bit. Good luck.

Liz

SunshineDaydream

I have been taking Myrbetriq for about a year. It has been very helpful and I don't experience any side effects. There are two dose options and I take the lower one. My insurance company did not want to cover it because there are less expensive meds to treat OAB, but my doctor got them to cover it by explaining it is the only OAB med that does not have side effect of causing dryness which I already have and take Cevimeline to treat.

I hope you find something that works for you.
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

jazzlover

Are they sure it's not Interstitial Cystitis?

That would require different treatments.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, mycoplasma,  recovered from Lyme disease

katie1111

I have tried myrbetriq in the past but it didn't work.  I have also used Ditrol, Ditropan and oxytrol patches.  They worked but things are getting worse.

Thank you.

Katie1111

Sharon

I'm having the same issue.
Not sure if it's not actually related to inflammation of the bladder or other corresponding area.
Right now it's increasing my dryness symptoms as I don't retain the water I drink.
I tried a progesterone cream in the past that helped a lot with the frequency, but caused constipation.
Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....

SunshineDaydream

Quote from: Sharon on May 23, 2018, 12:15:58 PM
I'm having the same issue.
Not sure if it's not actually related to inflammation of the bladder or other corresponding area.
Right now it's increasing my dryness symptoms as I don't retain the water I drink.
I tried a progesterone cream in the past that helped a lot with the frequency, but caused constipation.

Magnesium supplements can help with that. Gycinate form is good for bioavailability and doesn't cause diarrhea. A good balance.
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

Sharon

Thanks Sunshine, I actually do take high dosage Magnesium Citrate,
but even that stopped working when the progesterone kicked in.
I never heard of Gycinate form, but I'll be happy to give it a try!
Sjogren's (+ RA): positive ANA, RNP, RNP-A, APCA. Severe eye dryness + inflammation, multiple sensitivities and allergic reactions, fatigue. 
ORENCIA, Restasis, Anti-inflammatory diet, Vit. D & C, Ubiquinol 100mg, Omega 3....

SunshineDaydream

Sharon, KAL and Doctor's Best are good brands. Gycinate form is good for natural muscle relaxer and sleep aid, too!
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

jazzlover

Glycinate is good as long as you don't have an issue with oxalates. They CAN accumulate and cause bladder problems, pain in the body, etc.

katie .. There is a diet for IC and different meds from what you mentioned. Elmiron is one of them.

Also look into Mast Cell Activation Syndrome as a possible problem, making the bladder symptoms worse.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, mycoplasma,  recovered from Lyme disease

katie1111

Thank you everyone for your support and suggestions.

Katie1111

irish

I am suffering with this issue plus incontinence. Had some testing and was told probable interstitial cystitis and also probable autoimmune involvement. Then was diagnosed with spinal cord compression at C4C5 and had to have spinal fusion with cadaver disc placed and a titanium plate in neck with 4 screws.

Doctors felt the bladder could also be from the damage to my spinal cord. I have to get back to the urologist cause I have been too busy with other illnesses and the 2 surgeries. Hard to keep up with all my ailments lately. Just keep doing research and asking questions of the doctor. I sort of plan my life around my bladder. Isn't fun but it is what it is. Good luck. Irish