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Should I see Parsons next week or is my instill therapy enough right now?

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  • Should I see Parsons next week or is my instill therapy enough right now?

    Hi Everyone. I know Dr. Parsons is a big deal in the IC community. That goes without saying. However I live currently in Hawaii and have just started rescue instills of 40,000 IU heparin, 30cc Lidocaine, 10cc sodium bicarbonate three times per week and have not yet learned how to self catheterize. I have an appointment with Parsons August 29, 2013 in San Diego but if I want to reschedule I would have to wait till past Thanksgiving. Recently I saw a doctor at Stanford and he was helpful in confirming my local doctor's feeling that I have IC/PBS but he held no specific views on what should be in a bladder cocktail or how many times a week I should do it, or any other therapies I might try and wasn't particularly concerned about the intense genital pain I suffer from that is worsening. Also, he wasn't able to explain what may be the cause and I have a more complicated picture considering I also have a centralized pain disorder called CRPS and have been taking Ketamine which is known to cause symptoms like Cystitis.

    He suggested seeing Moldwin in NY but I cannot get an appointment there till November 11. Some people say this condition worsens with time and so far I have found this to be a fact.

    For anyone who has seen Parsons: I am looking for a doctor that may be able to answer some of these unanswered questions and have strong opinions on what I should do to recover rather than just say "I could try this or that" or "the studies are not there" which may be true... but I want practical personal experience to guide my doctor's choices.

    Still, going to see Parsons now would interrupt my treatment, cause stress, be expensive... etc. It's nice living in Hawaii except when you need to see a doctor on the mainland. Then suddenly it becomes a 5 hour + to and from airport + $400-$500 one way ticket hassle. Outside of the appointment I would probably have to spend $700-$800 to get there and make it happen, however $300 of which I might spend anyway to get to CA later in the month, so it is $400-$500 more than I would have planned to pay. In addition I don't have health insurance. However my father is helpful in funding medical expenses when they are needed.

    It would be frustrating to take that trip only to be told to continue Elmiron, continue the instills etc. This is basically the advice I got at Stanford. Though as I said it was nice to have everything confirmed.

    Advice is appreciated.

  • #2
    I do understand that Dr. Parsons has an outstanding reputation in the IC community. If you lived closer to his practice, I wouldn't hesitate to recommend keeping that appointment. However, given the expense involved --- and it sounds very much like your doctor is using Dr. Parsons' combination of ingredients for instillations --- you might want to consider giving the current treatment plan a chance to work. One of the problems with treating interstitial cystitis is that different patients are helped by different treatment options. Most of the time what we hear is that we can "try" different things --- but that's because we are all so different. You are already on elmiron, but it takes up to six months or longer to become effective. It does sound like you are already getting appropriate treatments. Is there a plan to teach you how to do your own instillations? If not, I suggest you ask.

    Sending gentle hugs,
    Stay safe

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    • #3
      I'm with Donna. I would wait and see, and it seems like you are on the same program that I am on. How much Elmiron are you taking? Parsons is a biggie, but looks like your doc is following his plan of attack.
      My blog on IC, adoption, and academia: the garlic whisperer

      Diagnosed Jan 2013. Currently taking:

      200mg Elmiron morning and night
      25mg Elavil at night (no drowsiness or weight gain)
      culturelle in the morning
      SLIT drops for allergies (environmental) 3 drops/night under the tongue
      zyrtec 24 hour nightly (recommended by uro)
      Instillations 3x/week: Parson's Solution
      uribel and prelief as needed

      Also took Desert Harvest Aloe (3 in the morning and 3 at night) for a year and had great luck.
      No longer need them, so I only take them during flares.


      • #4
        Dr. Parsons (UCSD) "Therapeutic Solution"
        40,000 U heparin,
        8 mL 1% lidocaine or 2% lidocaine
        3 mL 8.4% sodium bicarbonate

        As we know ans recently I talked my doctor into tweaking the formula because I saw that Dr. Robert Moldwin Anesthetic Solution 1:1 mixture of 0.5% Marcaine® and 2% lidocaine jelly (about 30-40 cc total) and Dr. Kristene Whitmore Marcaine 0.5% (20cc) - I felt like 8mL of 1% Lidocaine wasn't really filling my bladder. But maybe it would have been better to stick to the proven formula. I guess there is a lot more that goes into these formulas working than just quantity, but how the drugs interact.


        • #5
          When you say we are on the same program is your dosage of drugs like mine?