Announcement

Collapse
No announcement yet.

Update: Cytotec, College, Life

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Update: Cytotec, College, Life

    Hey everyone!

    A little over a month ago I finished my first year away at college! I'm happy to say that even with all the stresses that came with the spring semester I managed to get "A"s in all my classes and was put on the Provost's honor roll. I'm busy taking calculus with analytical geometry over the summer which will thankfully be over with in only two weeks (oooh I have over 68 credit hours now which means that I'm more than haf way done!)... and I'm also volunteering at the Juvenile Diabetes Research Foundation (I don't have diabetes but I wanted to be involved in an organization and help make a difference), I'm helping them plan a huge gala/ball for the fall to raise money for research. So overall life is good! I'm also working for my brother's company over the summer and hanging out with friends or babysitting. Unfortunately, I've noticed that a lot of my friendships have faded away, and I blame IC for that. Although, I have to think, would I have wanted these peope to be my friends if they couldn't handle it when I was really sick?

    As far as medications go, I'm now only on Cytotec (for IC), Toprol (for my heart), and Allegra (for allergies) and I'm doing amazing. I'm so happy that I finally only need to take 3 pills everyday instead of the insane amount I was taking a few years ago. My health problems are now an after thought, I'm happy that I no longer have to think about IC before I make plans to do something... that I can order whatever I want at a restaurant etc. The only thing, that I think still bothers my IC is alcohol, for some reason, no matter how well I'm doing, I still can't have alcohol. This isn't really a bad thing, since I'm still underage anyways lol so I shouldn't be having any to begin with! I've also started to work out which is something I wasn't able to do for the last couple of years because I either didn't have the energy or it would trigger an IC flare. I took my first bubble bath in 3yrs the other day which is something so simple ad that so many people take for granted, but it's something that I could count on causing a flare for me in the past.

    As far as family, my parents are getting divorced this summer and my mom just moved back to South Africa. Dealing with that has been tough but I'm getting through it. I think their marriage just couldn't cope with the curve balls life just kept on throwing at it.

    I'm planning a month long vacation to South Africa for over Christmas break right now! I'm super excited and cannot wait

    Lots of love,
    Carla
    current meds:
    cytotec 200mcg twice daily
    toprol
    allegra

    ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

    dx: hashimoto's thyroiditis 1998
    dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
    dx: endometriosis 2003
    dx: innapropriate sinus tacchicardia 2005

    meds tried but failed:
    elavil (6months)- severe tachycardia
    elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
    a bunch of others



    Me and my best friend's baby (also my Godson!)

  • #2
    Carla,

    Congratulations on finishing your first year! What an accomplishment.

    It feels wonderful to accomplish things even when the medical problems try to interfere!

    It sounds like you are still busy even though it is summer. Try to have some fun in there!!

    April

    Comment


    • #3
      Congrats! You should be so proud of yourself.....

      Comment


      • #4
        congrats and a question

        Congratulations! Hard courses, from what little I remember of them.

        Do you happen to know where I can find info to take to my doctor about cytotec? My last one would not put me on it bc of side-effects.


        I see a new one in a few weeks.

        Thanks so much!

        Comment


        • #5
          Carla,
          What an awesome job! You have done so well! Analytical geometry was my Achilles heel. Yuck! It sounds like your life is so full. JDF was the philanthropy for my sorority in college and they are a wonderful group of people. Glad your health is doing well, sorry to hear about Mom and Dad. I am in middle of a divorce right now myself and hope that in the end my daughter will survive the hiccups with a minimum of wounding. Luckily she is 6 so we alot of time to work on things. I hope your Mom is well in South Africa now that she has left the States. I went to college with a girl whose dad was a professor of surgery in South Africa and then took a job at the med school at the university I attended. She lived one residence hall away my freshman year and it was amazing to hear about her life there.

          Hugs to you,
          Barb
          (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

          [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
          :angel: IC Angel Volunteer Coordinator :angel:
          :) Contact me via PM or e-mail if you would like to help
          I have learned all about life in 3 words: It goes on! :D--Robert Frost
          PCOS 7/85
          RSD 7/94 :headbang:
          Endometriosis 9/98 :toilet:
          Antiphospholipid antibody syndrome 9/99
          Kidney stones--too many to count
          Factor V Leiden mutation 10/02
          IC 6/03 :evilsmile
          Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
          "Spirit is an invisible force made visible in all of life"--Maya Angelou
          "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]

          Comment


          • #6
            I am sooooo thankful for Cytotec! It changes lives!
            Started Cytotec 1-24-06

            Comment


            • #7
              Started Cytotec 1/2006 at three tabs per day, spaced out. Almost an immediate relief. No further bladder instillations needed.
              These days I eat anything but still find myself watching the amount of red tomato sauce, just in case. Cytotec also helped my acid reflux.
              I gradually weaned down to one and a half tab per day. (I take a whole tab at bedtime and half tab during day.) In almost a year and a half now, I felt slight burning once and that was an infection that was taken care of easily, Thank You God.
              I will always be grateful to Mr. Norman Smith for posting about his wife's relief with Cytotec, years ago. It has truly turned my life back around and I pray that it continues and that it helps others like it has me.
              Started Cytotec 1-24-06

              Comment


              • #8
                What are the side effects of this med? What are the risks for childbearing age? I haven't responded at all with Elmiron, Elmiron instills, heparin instills, DMSO instills, atarax or prelief. I feel I am winding down to my last options until I read these posts here.
                bunnykinb

                6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

                tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

                Comment


                • #9
                  Cytotec can cause miscarriage. I am past having any more children, so was not concerned. When I first started taking it at three tabs per day, I noticed a gnawing feeling in my stomach, like you would have if extremely hungry/empty. That feeling eventually went away after a while.
                  I also noticed a little tenderness of my left breast. Gyno told me to take Vitamin E. That took care of that.
                  Good luck and I hope you find relief.
                  Started Cytotec 1-24-06

                  Comment


                  • #10
                    saucasa - Sooooooooooo wonderful to read how well you are doing! I'm so glad you update us periodically on how life is going and how your IC is treating you - I know it helps give a lot of people hope and that's something we're often short on when we have IC.
                    Kim

                    Diagnosed August 2001

                    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


                    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

                    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

                    *****************************

                    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

                    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

                    Comment


                    • #11
                      I wouldn't be complaining so much if my burning was once in a while instead of practically everyday. I am 42, have 2 boys and do not plan on having anymore children. So, the side effect of miscarriages wouldn't be worrisome to me. How many uro's or doctors treat their patients with Cytotec? Just asking since there aren't many threads concerning this one.

                      Thanks.
                      bunnykinb

                      6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

                      tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

                      Comment


                      • #12
                        Hey Everyone! Thanks for the kind well wishes! I'll definitely continue coming on here to give updates.... I think most of the success stories stop coming here to post so I want to give people hope that there is some relief out there and it's just finding what works for you, whether it is Cytotec or Elmiron etc.

                        As far as side effects, I currently don't experience any with this medication. When you first start Cytotec you'll probably experience some mild uterine cramping (like period cramps) for the first two weeks or so but that passes. I also would not suggest starting on the higher dose of 200mcg. It's better to start on the least possible dose of a medication and gradually build up, and it's in your best interest to follow what your doctor says. You never know, if you're on a different medication that may adversely interact with Cytotec or if you have a medical condition with which you can't take Cytotec (only your doctor knows that).

                        Cytotec has horrific side effects in pregnant women and it's frowned upon by the MD community to use it to induce labor. In the past, Cytotec has caused rupturing of the uterus in pregnant women that has lead to death for both the mother and the baby. So this isn't a medication to mess around with if there is any possibility of you becoming pregnant and it's important to let your doctor know asap if you are taking this medication and do become pregnant. The only reason why I'm not worried about this potential side effect is because I'm not sexually active and I am on birth control.... I don't really see Immaculate Conception in my near future Anyways, so if you are able to have kids (i.e., you have not had a hysterectomy) and you are sexually active (even once a year ) then you must be on a reliable birth control method when using this medication. Usually women of childbearing age aren't even put on this medication.

                        Another thing about Cytotec is that you cannot take antacids containing Magnesium while you’re on it, so you can’t take Tums or Prelief etc. According to the manufacturer of Cytotec, if you do take those antacids along with Cytotec, you’ll have adverse side effects like diarrhea and Cytotec not being absorbed properly. Obviously, I have not tested if this is really true or not lol

                        I don't have the information about Cytotec that I did when I started with it, but there was a small study of only about 10-15 people in Finland who had IC, and did very well with this drug. My doctor prescribed it to me with the knowledge of that study, my intense begging, and with a demand that I be on proper birth control as long as I am taking it.


                        Much love,
                        Carla
                        current meds:
                        cytotec 200mcg twice daily
                        toprol
                        allegra

                        ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

                        dx: hashimoto's thyroiditis 1998
                        dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
                        dx: endometriosis 2003
                        dx: innapropriate sinus tacchicardia 2005

                        meds tried but failed:
                        elavil (6months)- severe tachycardia
                        elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
                        a bunch of others



                        Me and my best friend's baby (also my Godson!)

                        Comment


                        • #13
                          Well, your success gives me hope. I am tired of getting DMSO, 16 to be exact, without relief of my burning. I have cried so many nights. As mentioned before, if I was healthly and younger, I would consider another child, but at this point, I won't.
                          bunnykinb

                          6/04 dx Mild IC; 3/06 2nd hydro/cysto w/2nd uro; Moderate IC now. IBS dx 11/03. 6/08 dx Vulva Vestibulitis/Pelvic Floor Spasms. 7/20/15 Feels like I have moderate IC now. Burning again.

                          tried & failed treatments: Urocit K 2x/day, Prelief & Atarax 25 mg 3/05-6/06; elavil 10mg 11/30/06-2/28/07 (stopped due to hunger); elmiron orally but had throat tightness;heparin instills 1x/mo 9/04-2/05;elmiron instills every 2 wks 7/05-2/06;20 DMSO 7/28/06-9/07.nortriptyline 10mg 4/07-10/07current meds/treatments:Tofrinal 25mg;Yasmin bc. Heparin instills every 2 weeks 2/08-present. Mix: 8cc lidocaine, 8cc heparin (40,000 units), & 3cc sodium bicarb. main symptoms: frequency & labia/clitorial burning

                          Comment


                          • #14
                            Congradulations, Carla! It sounds like you're going to finish college early. Do you have plans for afterwards, or not yet? Just curious.

                            I'm so happy to hear that your health is good. That must be such an awesome feeling. Never take it for granted! Good luck, and we do hope to keep hearing from you.
                            Je vous souhaite de la joie, de la bonne santée, et tout ce qu'il y a de bon dans la vie.
                            Wishing you happiness and good health, and all the best out of life.

                            Peace, Carolyn
                            ___________________________________________________

                            Laura (11), Susannah (12 1/2) and Maman (that's me!), North Wildwood NJ, September 2007


                            On the Beach with IC

                            Comment


                            • #15
                              Congrats Carla, and good to hear you are still doing so well on the Cytotec. I had diarrhea on it, and also bled very very heavily when I tried it, but now I'm not doing the BCP anymore so no more periods (I have Premature Ovarian Failure (like menopause) so I can't get pregnant) I've thought about giving it a second try.

                              Butternut same to you: I'm glad you are also having such success on it!!!

                              Di

                              Comment

                              Working...
                              X