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  1. #1
    ICN Member
    Join Date
    Oct 2005
    Posts
    121

    Cysto & Kenalog Injection

    I went to a new specialist (at the U of MN) and they want to do a cysto with an injection of Kenalog (a steroid), Lidocaine and an antibiotic.

    I've never heard of injections in the bladder other than botox. Has anyone else had this? I've searched the board and didn't find much.

    I'm scheduled for this procedure Sept. 13.

    My last and only other cysto was in May. They did a hydrodistension and a urethra dilation - and I suffered for two months afterward. My bladder went into full retention immediately after the cysto, and then again a week later - for 5 whole days. I mention this all to let you know how unexcited I am at the thought of another cysto again so soon.

    Please let me know if you've heard of this type of injection. Thanks!
    Conditions:
    IBS 4/04; IC 8/05; Vitamin B-12 Deficiency 7/06; Asthma 9/06; Citrus, MSG, Sulfate/Sulfite, Nitrate/Nitrite, Sodium Benzoate Allergy diagnosed 9/06; Fibromyalgia 6/07; Pelvic Floor disfunction 2007; Hysterectomy 10/08; Fallopian Tube Cyst removed 5/10; Chronic Diarrhea since 12/10 ; Ulcerative Colitis 4/12

    Medications
    Elmiron 3x day
    Trazadone at bedtime
    Tramadol as needed for pain
    Monthly B-12 injections
    Continuous Birth Control (even though I had a hyst, to control cysts)
    heating pad, hot epsom salt baths, strict IC diet
    Interstim implant 9/11
    Ulcerative Colitis Meds - Remicade, Azathioprine, Lialda, prednisone several times a year

    Failed Bladder Treatments
    Lyrica, Elavil, Detrol, Detrol LA, Ditropan, Sanctura, Flomax, Prelief, Pyridium & Urelle (allergic!), Lidoderm patches, long term antibiotics - Macrobid and others, instillations (ouch!), CystaQ, pelvic floor therapy, fulguration, bladder injections, bladder stretching

  2. #2
    Forum Manager ICNDonna's Avatar
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    Oregon
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    I've heard of all of those things being instilled, but not injected into the tissue.


    Donna
    Have you checked the ICN Shop?
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    You'll find my story at: http://www.ic-network.com/conditions...tories/page/6/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool
    .....My Meggie.....

  3. #3
    ICN Member nanawaggs's Avatar
    Join Date
    Nov 2009
    Location
    Southern California
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    1,069
    Kathi, like Donna said about those meds being instilled in the bladder, I'm one who gets those instillations. I did read somewhere about Kenalog injections intramuscularly, but I've not heard of them in the bladder either. Maybe you can call you doctor to find out. I wouldn't think a cysto alone would be as painful as when you had the hydro but have you asked why your doctor wants another one so soon?

    Take care and may all go well. Please keep us posted.
    Never heard of IC until it was suspected....Never knew so many are suffering from it.
    Praying for a cure.


    11/2007 IC Symptoms began during recovery period of surgery for bladder suspension and hysterectomy, painful urgency/frequency
    8/2009 Suspected IC
    1/2010 Treatment began
    2/2010 Diagnosed PFD, began Physical Therapy
    2/2010 Surgery to remove mesh from bladder suspension
    5/2010 Surgery to repair bladder, vaginal vault and small intestine prolapse
    5/2010 IC officially diagnosed during surgery
    7/2010 Diagnosed with Candida Esophagitis, Gastritis, Diviticulosis, Gallstones
    8/2010 Surgery to remove gallbladder

    Treatments:
    Heparin/Lidocaine/Bicarb/Kenalog Instills
    Macrodantin 100 mg after each instill
    Valium Vaginal Suppositories: Cyclo/diaz/lido, 10/5/62.5 mg
    Pyridium as needed up to 3xday
    Celexa 10mg daily
    Premarin Cream 3xweek
    Aloe Vera
    Prelief
    Dual Action Acid Reducer/Antacid
    Fiber supplement
    Probiotics
    Physical Therapy for PFD
    IC Diet since 8/2009
    Gabapentin, 12/2011....seems to be working great!

    Medications Tried and Discontinued
    Elavil, worked up to 50mg (started 1/2011), caused retention & high blood pressure
    Urelle, caused retention
    Vesicare, caused retention


  4. #4
    ICN Member
    Join Date
    Jan 2014
    Location
    St Louis, MO
    Posts
    684

    Re: Cysto & Kenalog Injection

    The only prescribed medication I take currently for IC is 25 mg of Hydroxyzine twice a day. I had a 3 month follow-up this week with my urologist and he asked me how things were going. I told him I still have extreme urgency and I void on avg 25 times in a 24 hour period including 5-8 times after bedtime. For the next 4 weeks, he wants me to try hydroxyzine three times a day to see if there is any improvement. If there's still no improvement, he wants to schedule me time in the O.R. to stretch my bladder and inject my bladder with Kenalog. Although I've seen on this board where people have had Kenalog in an instill, I haven't seen where people have had Kenalog injections.

    Just wondering if anyone has had this done, and if so what were your results?

    "When you gotta go, you gotta go!"

    My IC Diet motto: "If you stray, you PAY!!"

  5. #5
    ICN Member
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    Feb 2007
    Location
    Central Pennsylvania
    Posts
    13

    Re: Cysto & Kenalog Injection

    I'm so happy to have found this thread as I just had five injections last week. This is my first time trying this therapy so unfortunately I don't have much to report yet, but I'm happy to share my limited knowledge on the subject.
    I have severe IC and have struggled for eleven years now. The only treatments that have worked have been yearly hydrodistention and fulguration (sp?) but the relief is very short lived - maybe 4 months. The rest of the year is just awful. Over the past three years, my doctor has been hinting at possible bladder removal; he keeps telling me it's the worst bladder he's seen. My last hydro was in May. At my follow up he asked if I wanted to go for a second opinion at Hershey Medical Center as he's heard of some success with severe IC - so of course I said, "let's do it".
    At Hershey, Dr. Elliott tells me that this is a very little known therapy that she has found to be helpful for bladders like mine. Unfortunately, it does take 4 to 6 weeks until a patient feels symptom relief so I'll be happy to report back in September. The treatment does cause increased frequency for about 72 hours afterwards. I'm told that the treatment can last anywhere from 4 months to a year - with most patients going 6 months. It was done under general anesthesia but she tells me once the bladder is better it can be tolerated without going under. She tells me that when she goes back in for a second treatment she can see rings of healthy tissue where she applied the first injections and will do the repeat injections in the still red areas. She is also recommending PFD therapy once we calm the bladder down. Of course there's always the chance that I don't respond to this therapy, but for now I am cautiously optimistic. I'll update when I have more to offer.
    Good luck to you!

  6. #6
    ICN Member
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    Jan 2014
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    St Louis, MO
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    684

    Re: Cysto & Kenalog Injection

    Thank you so much for replying, Iwannapaint. My urologist said he has had some patients who need to have it done every 4-6 months and he's had some patients who've only had it done once and continue to do very well. I am NERVOUS about having ANYTHING being inserted into my bladder for ANY reason as I remember how much pain I was in for a few days following the cystoscopy. However if it will help my IC long term and improve my quality of life (which isn't awful, but could be better)... I'll do it. I'm to call my urologist at the end of August to let him know if hydroxyzine 3 x a day is helping. If it's not, then the Kenalog injections looks like my next step. *GULP*. Pease keep us posted as to how it turns out for you.

    "When you gotta go, you gotta go!"

    My IC Diet motto: "If you stray, you PAY!!"

  7. #7
    ICN Member
    Join Date
    Feb 2007
    Location
    Central Pennsylvania
    Posts
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    Re: Cysto & Kenalog Injection

    Just wanted to update on my recent bladder injections. I am still feeling cautiously optimistic, but it hasn't been easy. For 5/6 weeks after the injections my bladder was in a full on flare. I was able to tolerate it by using my pain meds a little more freely than is normal for me. However, I was still able to continue to work everyday. Everything started calming down week 6 thru 8 when I started noticing a different kind of pain and it was clearly my pelvic floor muscles. I find it amazing that I couldn't tell the difference before. Clearly my bladder was feeling better. I had my follow up appointment last week and we are now going to be starting with pelvic floor therapy. I'm fortunate in that we have a practice that specializes in PFD close to where I live and I'm excited to see what relief this might add. I don't anticipate that therapy will be easy, but I am hopeful that in the end it will be worth it. I will update again in a few months! Blessings to everyone dealing with this condition!

  8. #8
    Forum Manager ICNDonna's Avatar
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    Re: Cysto & Kenalog Injection

    Quote Originally Posted by Iwannapaint View Post
    Just wanted to update on my recent bladder injections. I am still feeling cautiously optimistic, but it hasn't been easy. For 5/6 weeks after the injections my bladder was in a full on flare. I was able to tolerate it by using my pain meds a little more freely than is normal for me. However, I was still able to continue to work everyday. Everything started calming down week 6 thru 8 when I started noticing a different kind of pain and it was clearly my pelvic floor muscles. I find it amazing that I couldn't tell the difference before. Clearly my bladder was feeling better. I had my follow up appointment last week and we are now going to be starting with pelvic floor therapy. I'm fortunate in that we have a practice that specializes in PFD close to where I live and I'm excited to see what relief this might add. I don't anticipate that therapy will be easy, but I am hopeful that in the end it will be worth it. I will update again in a few months! Blessings to everyone dealing with this condition!
    Thank you for the update. I hope you continue to improve.


    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: https://www.ic-network.com/patient-r...on/#icfoodlist

    You'll find my story at: http://www.ic-network.com/conditions...tories/page/6/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Anyone who says something is foolproof hasn't met a determined fool
    .....My Meggie.....

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