Announcement

Collapse
No announcement yet.

Once On Aloe Vera, Always on Aloe Vera?

Collapse
X
Collapse
 
  • Page of 1
  • Filter
  • Time
  • Show
Clear All
new posts
Previous template Next
  • #1

    Once On Aloe Vera, Always on Aloe Vera?

    For those of you using aloe vera capsules as a help with your IC, are you supposed to remain on this pill or can you stop taking them once you're healed?

    I'm using 3 capsules/day of Desert Harvest brand. I believe after 1 week my burning has decreased, though I am suffering some GI upset. I can only hope the GI upset is from something else. My GI tract is super sensitive.
    Diagnoses: Mast Cell Activation Syndrome (2012),Interstitial Cystitis (2003), Postural Orthostatic Tachycardia (2003), GERD (since ?), IBS (since ?), Low Blood Volume (2006), Small Intestine Bacterial Overgrowth (2007)

    Medicines:
    Claritin 10 mg/AM for MCAS and allergies
    Synthroid
    Aciphex 20 mg in PM for GERD
    Zantac 75 mg, one at night for MCAS and GERD
    Singulair 10 mg in AM, for MCAS & allergies
    Zyrtec 5 mg/PM for MCAS and allergies

    Non-Medicinal Helps:
    glucosamine 500mg/MSM 500mg 2 X/day
    I avoid foods that I react to in my esophagus, bowel and bladder, and I react to many things. It is an imperfect method, but it is all that I do at the moment.

    I can do all things through Christ which strengtheneth me. (Phillipians 4:13)
    Tags: None
  • #2
    If you find something that alleviates your IC symptoms, it needs to become a routine part of your life until such time as a cure is found.

    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    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.     [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment

    • #3
      I find that if you take the aloe vera with food or milk, or even prelief, it can help lessen the stomach upset.
      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

      • #4
        HI Futurehope,
        I wish there was a cure for IC. Even with the Elmiron you have to continue taking it or the symptoms return......as is with the Aloe Vera. I'm glad it's working for you. Maybe you'll need to lower the dose for a while and slowly increase. I find 3 capsules a day is the correct dose for me and it doesn't cause any stomach problems. Good luck! Roxie

        Double Spinal Cord Stimulator surgery 8/09
        Unsuccessful MiniArc sling surgery 12/07
        Dx'd Hypothyroid
        Dx'd Chronic Axonal Neuropathy & Myopathy
        June 2007
        Dx'd IC May 2006 (after suffering for 25+ yrs!)
        First Cysto 1979
        First Hydro 1981 (Many treatments since then!)
        Collagin"Durasphere" injections for urethra
        Gall bladder surgery Aug. 2004
        Gastric Bypass Dec. 2004
        Dx'd: Barrett's Esphogus July 2004
        Dx'd: Vaginal Atrophy 2005
        Bladder surgery 2000
        Dx'd: IBS 2000
        Hysterectomy (fibroids) 1999
        Laminectomy 1989
        Dx'd: Degerative Disk Disorder 1989

        For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
        I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

        Comment

        • #5
          It does seem that once people find something that works to stop their symptoms they seem to stay on it to keep the symptoms away.

          That was one of the things that upset me so much about Elmiron, my gyn's office made it sound like I just needed to use it until it "healed" my bladder and then I could come off of it after about a year. After reading posts on here I realized that most people are on it forever. It's soooo expensive I don't want to be on it forever. I just reordered it against my better judgement because I honestly don't even know if it is helping. Guess I'll keep on taking it until my July follow up with my uro and go from there.

          If you're taking the Aloe and it's helping I personally wouldn't want to rock that boat by stopping it. Maybe once you feel better you could lower your dose though?
          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

          • #6
            Thanks for Your Replies

            I appreciate your input.

            Griffsmommy, how long have you been taking the elmiron?

            From my perspective, my mild IC used to only flare for 2 -3 weeks at a time, with long periods of respite in between, maybe years.

            So, I am not used to thinking IC is permanent. I never had to think this way before last July, 2006.

            So, you'll have to excuse all my questions. I might as well be new to all of this.
            Diagnoses: Mast Cell Activation Syndrome (2012),Interstitial Cystitis (2003), Postural Orthostatic Tachycardia (2003), GERD (since ?), IBS (since ?), Low Blood Volume (2006), Small Intestine Bacterial Overgrowth (2007)

            Medicines:
            Claritin 10 mg/AM for MCAS and allergies
            Synthroid
            Aciphex 20 mg in PM for GERD
            Zantac 75 mg, one at night for MCAS and GERD
            Singulair 10 mg in AM, for MCAS & allergies
            Zyrtec 5 mg/PM for MCAS and allergies

            Non-Medicinal Helps:
            glucosamine 500mg/MSM 500mg 2 X/day
            I avoid foods that I react to in my esophagus, bowel and bladder, and I react to many things. It is an imperfect method, but it is all that I do at the moment.

            I can do all things through Christ which strengtheneth me. (Phillipians 4:13)

            Comment

            Previous template Next
            Working...
            X