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I have a ? about Instills

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  • I have a ? about Instills

    Have any of you gotten ill after taking them? I just had my second on Monday and today I have felt terribly ill, all over. Terrible headache, weak, more pain in the bladder and urethra even with my Urelle. I just wondered if this was a side effect that comes on as you build up the instills or maybe I'm just coming down with something it just the IC itself making me sick. I also get cortizone injections in my knee about every 3 weeks and then with the kenelog being a steroid in the instill...maybe it's too much steroid? I dont know but thought I would ask. I haven't felt this bad in a while, I haven't eaten or drank anything that would bring on a "spell" so not sure what's going on.

    One more question..I've heard a lot about hair loss with Elmiron. Does this occur when it's used in the instillation also or just as an oral drug? I was on Depakote for a while and it didn't do much but break my hair off so I was hoping I didn't have to go through anything else with my hair...

    Thanks so much everyone for all your feedback. I'm really glad I found this forum. It's gets mighty lonely sometimes. My husband is very supportive but it's hard for him to understand this much less the female structure... But he tries and that's all I could ask for.

    Thanks again,


    **Normal is just a cycle on the washing machine**

    Wife and Sweetheart to Brent, Mom to Emily 30, and Destiny 29, and MOMMY to Jackson age 10. Granny to baby Cate, age 2 and the Queen to 3 dogs and 4 cats. Daughter to the King of Kings.
    Graphic Designer.

    Babyz Breath

    Instills- Once a week, Elmiron, Kenalog, Lidocaine, Sodium Bicarb.
    Daily Meds:

    Trileptal 600 mg for Bi Polar
    Respiradal Mood stabalizer
    Vicoden, 5.5 as needed for pain/stopped
    Bentyl for bladder spasms
    Urelle for burning
    Prevacid for Acid Reflux
    Lorazapem for Anxiety attacks as needed
    Ultram for pain
    Fentanyl Patch 75 mcg for pain/stopped due to skin rash

  • #2
    Sorry this happened....

    Hi Cindy and !
    What sort of medications were in your install? I used to get horrible flares and headaches after DSMO installs, but not until my second one. I didn't get sick after rescue installments (mine were mainly heparin and lidacain), I just was horribly incontinent! Because I had no relief or luck with installments I don't get them right now and am hardly the expert, but I don't think getting worse after installments the way you have described sounds normal at all. Have you called you doctor? I would right away if I were you. Anytime I had something unexpected happen after a new medication, procedure or treatment I would call the doctor and ask questions. The worse that ever happened was that I felt a little silly sometimes!
    I was on Elmiron orally for 8 months and unfortunately did not respond well. I had alot of nausea and throwing up and while I didn't notice bald spots (this is how Elmiron related hair loss is described by the drug company) I did have alot of thinning and breaking and my hair and nails were both in bad shape, but that might have been related to me having a hard time finding fruits and supplements my bladder could tolerate.
    I hope you get some answers and relief soon and I am glad you found the ICN!
    I was so lonely and confused after my diagnosis and had a hard time explaning my disease to family and freinds. The ICN has greatly helped me educate myself and find a good specialist, and I have made lots of wonderful friends here as well!
    IC; PFD; possible Fibromyalgia; IBS;

    Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

    I've Tried:
    three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
    Currently using:
    Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
    Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
    I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!


    • #3
      I have read on some of the post that some do get headaches. I personally have never had that reaction. It would be helpful if you did know what was in your instill. My instill ingredients are in my signature.
      TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
      My Helpful Hints for Home Instillation:

      Institute of Female Pelvic Medicine (J. Dell, My MD)
      Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
      I post to encourage and offer total support for rescue instillations.
      Find me on facebook: L. Clark Thomas