Latest Blog Article: New Bladder Pain Treatment In Development - IC Clinical Trial
Results 1 to 11 of 11
  1. #1
    ICN Member
    Join Date
    Nov 2004
    Location
    newfoundland
    Posts
    115

    Yuck out of remission...

    I have been in remission for almost a year. Thankfully it was also while we were TTC #2. I am 6 weeks pregnant and going through constant flare.

    Nighttime is the worst. I took a benedryl last night, sorta helped a bit.

    The problem is since I haven't been to my urologist in over a year, I have to get another referral to see him again....I can't believe it. So they know I have it and I am pregnant but they won't see me until I get another doctor referral.

    Can I take baking soda and water???

  2. #2
    ICN Member
    Join Date
    Dec 2013
    Location
    Las Vegas
    Posts
    1

    Re: Yuck out of remission...

    Congratulations on the baby.
    Everyone's IC reacts different to getting pregnant. I don't remember how mine was. I know I had IC with both of mine yet I didn't have a diagnosis at the time.


    I would try to get in as soon as you can but Yes baking soda and water are safe to take. I was wondering if you have tried Preleif yet?

  3. #3
    ICN Founder icnmgrjill's Avatar
    Join Date
    Mar 2000
    Posts
    3,383

    Re: Yuck out of remission...

    Carolyn,

    It's really your OBGYN who can tell you what medications are safe to take during a pregnancy. I was at an OBGYN's office today and there was a sign that said you can't take tylenol in the first 12 weeks... so don't assume that any medication is safe until you talk with your obgyn.

    Also, please check out our pregnancy center... there's an article there that you can order which discusses the safety of various IC medications during pregnancy by Dr. Erickson. We don't sell it .. you have to get it from the journal.. but it's the one article you want in your medical file when you're pregnant to help everyone make an informed decision about what you can or can't take.

    Jill
    Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

    Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

    Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.







  4. #4
    Forum Manager ICNDonna's Avatar
    Join Date
    Mar 2000
    Location
    Oregon
    Posts
    35,992

    Re: Yuck out of remission...

    I'm so sorry you're not feeling well. My children were born before my IC, but from ICers have posted here during pregnancy and, just as with treatments, etc., it appears that each of us is different. Some go through pregnancy feeling good during the entire time; some have problems during the first trimester; and (unfortunately) a few are miserable the entire nine months. The only common thing is that after that little one is in the arms instead of the abdomen I have NEVER seen a post that is not excited and happy about the magic of creating a new life.
    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.....

  5. #5
    ICN Member
    Join Date
    Feb 2013
    Location
    Atlanta
    Posts
    1,132

    Re: Yuck out of remission...

    yay baby!! congrats!

    sorry you are flaring. I hope you get some relief soon. Just remember this: you got in remission once, you can absolutely do it again.
    ----------------------------------------------------
    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.

  6. #6
    ICN Member
    Join Date
    Nov 2004
    Location
    newfoundland
    Posts
    115

    Re: Yuck out of remission...

    Hi,

    Thanks for the advice. Considering I will not see an obgyn until after 12 weeks (another six weeks), I have to find someone else to give advice! I can't get into see my urologist until Jan 10th....I was referred to Motherrisk and outpatients clinic...So not too much help there.
    Not too many outpatient doctors know about IC, nor do many obgyns. My last obgyn was clueless about it - told me to take cranberry pills..I have an RE right now as we got pregnant using injectible medications and IUI. I think its the progesterone suppositories I am on making my bladder worse. Only thing is once I saw the RE once, I never saw him again, it was a nurse who did all my treatments...who of course also knows nothing about IC. Although I just called and she can't get me in and referred me to Motherrisk and said I could take baking soda and water. So I will try that later...

  7. #7
    ICN Member
    Join Date
    Nov 2004
    Location
    newfoundland
    Posts
    115

    Re: Yuck out of remission...

    So update - Obgyn will see me in the new year, Jan 10th for the urologist. Both suggested I go to emerg and see what they say and to call mother risk.

    I called MotherRisk and they gave me the following information:
    Elmiron - Believed to be safe in pregnancy due to the large molecular size.
    Vesicare - Adverse effects in mice and rabbits, no human studies - do not recommend
    Pyridium - no studies or few studies, results from the few that were done are reassuring and promising
    Elavil - Seems to be safe, may be withdrawal after birth, studies that showed effects were done with doses 8-33 times that of the regular doses a human would take.
    - I use to take 10 mg....so I am unsure on this.
    Baking soda and water - Unsure, antacids that are recommended in pregnancy are ones without sodium....

    So considering Elmiron has never worked for me, that doesn't help me much. I will not take the vesicare based on the above and what I have read.
    Pyridium I may take if I get any worse and I may take half my elavil dossage if it looks like I can't get any sleep again tonight. The baking soda and water...I am unsure on.

    Carolyn

  8. #8
    ICN Member
    Join Date
    Feb 2013
    Location
    Atlanta
    Posts
    1,132

    Re: Yuck out of remission...

    you might want to hold off on the baking soda. I know some people have increased blood pressure with it.
    ----------------------------------------------------
    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.

  9. #9
    ICN Member ICKIRSTI's Avatar
    Join Date
    Oct 2006
    Location
    New Jersey
    Posts
    370

    Re: Yuck out of remission...

    Hi Carolyn,

    I know it can be tough during the pregnancy dealing with IC. My little one is 8 months and with a lot of fight inside.. I am most great fully still nursing. Hale is the King of the medicine with pregnancy and nursing. His medications and mothers milk has been a godsend for me. Of course there is a lot of consults with Docs, but it helps to inform yourself yo the fullest extent too!

    You might find you will have more options with the Uro. I am allowed to have Instills while nursing. Not sure about pregnancy. Outside of the frequency, which is no surprise or anomaly for me due to small bladder size.. I did great during pregnancy with all my medical conditions! After the first trimester you might find yourself feeling great. Pregnancy hormones really can make great things happen. I sure wish I could bottle them up let me tell you!

    I pray you have similar success and are feeling better in no time and enjoying your pregnancy to the fullest extent! Congratulations and warmest regards!
    Love is a fruit in season at all times, within reach of every hand. ~ The Blessed Mother Teresa

    Status: Diagnosed October 2006 via cystoscopy with hydrodistention. Max anesthetized bladder capacity only 250 cc's. Mast cells and pinpoint bleeding found.

    Remission for me means less pain for more days than not. Frequency is inevitable with a bladder this tiny! That is ok though. The difference between when I was diagnosed and now, is that I have embraced that fact. Me and the loo, we are one.

  10. #10
    ICN Member
    Join Date
    Jan 2013
    Location
    Arlington, VA
    Posts
    3

    Re: Yuck out of remission...

    I agree with Jill that your obgyn should be your primary determinant of what is safe and is not safe. However, there are reliable resources on the web to locate information if you cannot see your OB. For example, the Mayo Clinic provides information on drugs thought to be safe during pregnancy. The FDA has issued classes of drugs and you can locate that information with a quick google search. For example, Elavil is pregnancy class C, meaning there is contradictory evidence out there. Pyridium on the other hand is pregnancy class B (so generally considered more safe). And although Tylenol is pregnancy class C, until Jill mentioned it, I have never read or heard anywhere that Tylenol was not safe during pregnancy -- quite to the contrary. Most literature says it is one of the few OTC drugs you can take (because aspirin, ibuprofen, etc.) are generally not recommended. According to the Mayo Clinic "most pregnant women can take Tylenol." I am not a doctor, and of course every woman and her health issues are different, but I think all pregnant women (and all IC patients) should try to educate themselves. And if based on research you feel that your doctor is overly restrictive on medications, try obtaining a second opinion. Many doctors aren't willing to change normal recommendation, because they do not understand the pain that IC can cause. A second doctor may have more experience with IC or you could always see a Maternal Fetal Medicine specialist.

  11. #11
    ICN Member Nora12's Avatar
    Join Date
    Jul 2013
    Location
    Cushing, OK
    Posts
    10

    Re: Yuck out of remission...

    Hi, Sorry you are having such a rough time right now. How frustrating that you need another referral since the year has passed. Oh the frustrations of insurance sometimes. I am also 6 weeks pregnant, or about. I was on hydroxyzine, Elmiron, elavil and aloe. I cut out all but the Elmiron and plan to take benedryl if really needed. My obgyn can't see me until the first week of January as well. Hope you start feeling better and keep us posted on if you decide to get back on any meds. Good luck and congrats!

Thread Information

Users Browsing this Thread

There are currently 1 users browsing this thread. (0 members and 1 guests)

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •