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Hi, everyone! I'm actually doing really well off CyA!

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  • Hi, everyone! I'm actually doing really well off CyA!

    Hi, everyone! I went off CyA about a month ago now and I actually have been doing really well (so far) off it.

    Right now I'm not on any "official" IC meds.

    I'm on Prozac (depression), Trazadone (helps with sleep at night), Minocycline (for rosacea) and Synthroid for my hypothyroidism (which still isn't under control yet, sigh, it will take several months to slowly increase the dose up to the right point.)

    I do have Ultram for when I need it, but I hardly ever need it anymore. I would say I'm only using about 10 Ultram a month now.

    I am taking d-mannose (that sugar stuff) (no particular manufacturer, I just buy what I can find) to help prevent UTI's (one dose per day) and also the pain doctor (D.O., so he's trained in this) did some adjustments on my back/neck (he found out I have an S-curve scoliosis and some other problems in my back.)

    I have no idea why I'm doing so well right now, but I'm glad for it and I guess I will just for the time being continue to do what I'm doing. It would be nice if all I needed was a back adjustment and some preventive medicine (d-mannose to prevent UTI's) to be comfortable nearly all the time.

    I do have cystitis cystica as well as IC (went back through my medical records recently) which has never been addressed. CC can be caused by chronic infections, and some doctors treat it by using antibiotics or other antimicrobials long term (sometimes even longer than one year!) I don't really feel comfortable taking, say, Cipro for a year or longer, but doctors have already given me the "okay" to use the d-mannose to prevent UTI's, so I figure, I'm better off in general if I don't keep getting UTI's all the time. It's expensive but I do feel it might be helping me, although it's hard to tell which part is helping me more - the back adjustments, the d-mannose, or none of the above. Who knows? I'm just glad that I'm feeling comfortable almost all the time now, and comfortable without having to use medicine that made my kidneys go belly up.

    I guess we'll see what the future brings. I've learned never to trust too much in any period of remission/semi-remission....

    Blessings,
    Lori

  • #2
    That's great news Lori:woohoo: I know that you've had a really rough time from reading your posts and it's so nice to hear that you're feeling so much better. I hope it was really something as simple as a back adjustment that you needed this whole time and you'll continue to feel better.
    Christine



    I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
    1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
    2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
    I have tried every oral medication as well as rescue instills and DMSO.

    I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

    Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
    Also proud mom to the best Bullmastiff on earth, Claus

    Comment


    • #3
      Oh Lori I am so happry for you.. Iwas really worried that the CYA might of damged your kidneys.. But thank God your are fine..I hope you comtinue to have good days I will keep praying that you do.. ((((((hugs)))))))

      Ronda
      Hugs
      Ronda

      ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


      Link to Patient Handbook:
      http://www.ic-network.com/handbook/

      Diet Reference Sheet:
      http://www.ic-network.com/diet/icndi...tsheet0909.pdf

      Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

      Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

      Meds I have Tried:
      Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
      Lexapro< Bad reaction to this med!
      Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

      Dx With IC in Nov 2006 with Hydro/Cysto
      Hydro/Cysto Caused Bladder to Rupture.

      Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



      ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

      Comment


      • #4
        Thank you both so much!

        Blessings,
        Lori

        Comment


        • #5
          Lori...This is such good news. I hope this continues for you. (((hugs)))
          Sharon

          Shopping??? Did someone mention shopping? I'll get my hat... ;-)

          Where I can be found most days.



          Link to the ICN Patient Handbook:
          http://www.ic-network.com/handbook/

          Link to the IC Diet:
          http://www.ic-network.com/diet/


          IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

          Comment


          • #6
            Lori that is great. I was really concern about you being able to get off CyA. I know you must have been terrified not know the end results, but I am so grateful that you are doing well without it.

            That is a mystery about what is working for you. I definitely would keep doing what you are doing and hope it continues to do well for you. Just glad to see you feeling better.

            Sending hugs, Trishann

            Comment


            • #7
              Oh that's wonderful Lori!!!

              Do you think that the Prozac and Trazadone have anything to do with it? I've heard people using those for nerve type pain and other things. I wonder if it's helping even if your using it for other stuff?

              Awesome!
              http://www.TheCraftyEwe.etsy.com

              Comment


              • #8
                Yippppeeeeee Lori, glad to hear from you and that your doing so well.

                Comment


                • #9
                  You know, it's really exciting to see more and more of us find answers and hopefully we can share these answers with others and they'll be able to use them to make their lives better and less painful. This is a blessing indeed.
                  http://www.TheCraftyEwe.etsy.com

                  Comment


                  • #10
                    ((((Lori)))))

                    So happy to hear that you are doing well of the the CyA. I hope that you continue to do well on limited medication.

                    Kara
                    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                    I also have some journals of my journeys, past and some present at:
                    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                    Comment


                    • #11
                      Hi Lori -

                      So great you're off the immnosuppressive stuff. Perhaps it really gave your bladder time to heal. Did you read about that herb forskolin that injected into mice cause their bladders to eject e-coli from the lining so that anti-biotics could kill it (or theortically d-mannose could wash it out.). I'm trying it for one month but wouldn't take on long term basis until I know about it. My IC is very bearable for weeks and then sometimes I flare. I'm taking other supplements too but don't know really what does anything. Continue with your good luck! PV
                      I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

                      Comment


                      • #12
                        That is great! It might just be the combination of the treatments you're using now.... and if IC is autoimmune, then it's not unheard of to go into spontaneous remission.... Hopefully in our lifetimes their will be some research that will finally give us the true IC miracle drug (if there even is one!). All I can say is that I undoubtedly have you to thank for my own remission because I would never have thought of trying cytotec if I didn't read your posts.... THANKS!
                        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
                          Wow, thanks everyone! I'm still doing just great bladder-wise! (I've been in Santa Fe for a week, long story - actually was there for five days then trapped in Dallas for two days because of storms and the Memorial Day weekend traffic, no planes...)

                          It could be that it was the Prozac/Trazadone combo - but I've used those before and the last times, they irritated my bladder rather than helping so I don't know....I have heard of people getting pain relief from various antidepressants, though.

                          I noticed a couple of weeks ago that if I missed a dose of d-mannose, I got bladder-pain again. Then when I took my dose, within a few hours, I was pain-free again.

                          Now I don't need pain meds at all anymore (and I just went through my period, which is usually my worst time, before and after my period I mean) and I don't have any twinges or frequency.

                          I'm starting to think that the cystitis cystica I was diagnosed with was the cause of my pain and maybe even the cause for my bladder to look like it had IC. In other words, I really think I had CC all along and not CC plus IC. My records show I had CC - but the doctors did not treat me for that. The treatment for that generally is to use antimicrobials (antibiotics usually) for very long periods of time (one year to five years in the studies I read) to keep the bladder free of infection long enough for a new lining to grow.

                          Anyway, I thought - don't really want to do antibiotics (and docs don't want to prescribe those for me) but I do have this d-mannose sitting around...doc already said a few years ago it was okay for me to take it, so I don't feel I will be harming myself by taking it...

                          It's probably a mystery why I'm feeling so much better, it could be any of the things everyone has mentioned or lots of other things, but I have it in my head now it's the d-mannose working for my cystitis cystica that's making the difference, so for now I'll continue on it. It's so nice not to be in pain, and not to need the Ultram.

                          I'm sure d-mannose wouldn't do much of anything for regular IC like you all have, but I do have diagnosed CC (usually that is caused by very long-term chronic infection) and the treatment for that is keeping the bladder UTI-free for a long time, so...well, it seems to work for me anyway. I wouldn't think that anyone here would have a reason to try it unless they have chronic UTI's, CC, and their doctor recommends it. And I always think it's really important always to check with your doctor first before you ever take any supplement, no matter how harmless it might seem to be. Especially with this IC stuff, we don't need anything that might mess our systems up in any way! My doctor said it was okay for me to take this, though, so I feel okay about taking it. Of course I'm trying to watch for any potential side effects, though. I haven't noticed any yet that I'm aware of, but I'll still be observant for side effects or anything bad.

                          Could it be my bladder was just hurting from a chronic infection rather than IC? This really makes me wonder. I know that I've always been so much better on antibiotics - the remissions I've had, have always been in conjunction with antibiotics. Even with CyA, my remission didn't start until after the dentist prescribed me a big huge dose of Keflex antibiotic because of gum surgery I had (crown-lengthening.)

                          Well, I'm keeping my fingers crossed that what feels like a remission to me (no symptoms that I can tell, I sleep through the night without pain meds, no frequency, don't have to avoid foods or drinks) continues.

                          I'm kicking myself that I didn't stick with the d-mannose when I first decided to try it. I stopped because I didn't want to pay 40 bucks a month. And I wasn't sure it would work. My bladder was better on it, yeah, but then when I'd stop, the pain would come right back. I thought, oh, it probably won't work, and I can't just stay on it forever, it's too expensive....but lately I've been thinking, you know what? Even if I pay 40 bucks a month for this stuff, it's worth it that I'm free of pain. There are people who pay lots more than that each month for medicine. Maybe I shouldn't be such a cheapskate.

                          Oh, I flew to Santa Fe mostly to see that area (around Los Alamos) and Albuquerque because there's about a 50% chance Dave will be stationed in one of those two places next - I kind of wanted to see where my new home would be. Dave had to go TDY (Army trip) there so the hotel was already paid for, and he was able to get me a ticket for cheap - so it didn't cost us all that much. And it was good to be able to see where we might be moving to next year. Sometimes it's hard with the military, moving into a place you've never been before...it's always nice to kind of get a look before you move so you can kind of anticipate things.

                          Blessings,
                          Lori
                          P.S. I'm sorry I haven't been on lately, I've decided to just use the internet once per week, because I don't get anything done around the house/hobbies etc. when I'm on the computer too much - seems best to just limit my time. So anyway, I miss a lot of posts I think this way. On the other hand, I'm getting my spring cleaning done!

                          Comment


                          • #14
                            Lori that is great news, this must be like a miracle drug to you after what you have been through. Lori I don't know how you came across this d-mannose but I am so glad you found it and it is doing wonders for you. I am so happy for you and that you finally got some relief from that awful pain. Lori thank you for letting us know you are doing well. It just bless my heart to hear this good news about you.

                            Take care, Trishann

                            Comment


                            • #15
                              a bit confused

                              I wonder why the docs put you on an immunosuppressive drug if you had infections all the time? Wouldn't that increase infections? Had you tried d-mannose before trying cyclosporine? Lori could you mention or PM me with brand of d-mannose you take? Mine isn't so expensive. I try to get my docs to even consider d-mannose or research it and they just shake their heads. I ask them if it can interfere with a UTI culture and they don't know but worse don't care to find out. They can't relate to anything unless it is synthesized drug. D-mannose (a sugar) occurs naturally in fruit and sometimes is extracted from certain trees I think. I never head of cystitis cystica! I'm so glad you are doing well and that your posts have helped others, I'm sure.Thanks. PV
                              I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

                              Comment

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