Interstitial Cystitis and RA | Arthritis Information

 

I have been fighting interstitial cystitis for over a year now and my doctor and I have concluded that its auto-immune related. IC is due to bladder inflamation thats not related to a bacterial or viral infection. It causes pain below the belly-button and because of the inflamation, I have to go to the bathroom every 45 minutes - which makes for a poor nights sleep.  I first realized I could control the symptoms with prednisone (while on a short course for my RA) and that got me googleing the idea. My RD agree and to help out, took me off mtx and replaced it with cyclosporine. Cyclosporine is used to help shut down the immune system for patients with organ transplants. It also seems to suppress the cytokine/T-Cell activation that may cause IC. Its a rather nasty med, but it seems to be working.  Anyone else out there with IC issues or that have tried cyclosporine as an immunosuppresent?I never had a UTI in my life that I know of until I started having trouble with inflammatory arthritis, fibromyalgia, asthma and of course osteoarthritis. They all hit me at once last Spring. Then I started getting UTI's. Then they became resistant to Cipro, so I had to go to the doctors office for shots of some really, really strong antibiotic. My bladder is not inflammed, according to the urologist they sent me to. They have no answer for the recurrent UTI's. I also had a cat scan of my abdomen. I do not have any answers for you, I'm sorry. All I have is questions. I think my UTI issue is realted to the arthritis somehow, but I have nothing to support that except the timing of the onset and my own intuition. Sorry to hear you are having this bladder issue. I sincerely feel for you. It is quite an aggravation, and a bit scary. Hope you find some answers and a solution to the problem soon. Best Wishes, VI can't exactly commiserate.. but I have an incident that seems to be associated to your experiences.

I have IC, I was diagnosed 4 years ago. It was really bad right before I was diagnosed. I kept a log of how many times I went to the bathroom a day and it was up past 30, sometimes every 5 minutes. I had trouble like this since I was a little kid. I have found it to be very food related for me. Acidic stuff always sets me off Now that I am more controlled I dont really avoid any one food unless I know I will be travelling or be going somewhere hat doesnt have a bathroom.

I take prosed as needed and cystaQ-the herbal version of elmiron. I also take Sanctura which reduces urine production.

I definetly think that IC is inflamatory...many people do say its autoimmune...I agreeIC and RA can be related as many other inflammatory diseases.  It pains me to read all these stories of sufferers who just go from one set of symptoms to the next, one set of medicines to the next and never really being free from the disease.  I had my first signs of RA when I was 14, when my right hand's mid finger 'snapped'; I needed surgery to regain mobility and I was then told I had juvenile RA.  From then I went from suffering from several forms of cystitis all my life, skin inflammations, chrinic ear inflammations, gum inflammations and many others.  I decided enough was enough when 2 years ago I could not walk anymore and barely sleep from my knee pain (RA had 'travelled' to my knee as well as my hip and elbow - and hands of course).  I sought the help of a homeopath.  I wen to 3 different homeopaths and finally found an excellent Practical Homeopath who prescribed me remedies for my Pituitary Gland who, in her analisys of all the symptoms I was suffering from, was at the root of all my RA problems.  There is a link for some people.  The miracle is that she found it (homeopathy looks at the whole history of the individual over the years).  I now walk, hike, run, I no longer have any form of cystitis and no other symptoms of RA (or any other, for that matter).  I know it's a leap for some, especially in North America (whilst in the UK it's quite popular), but homeopathy can restore your life no matter at what stage of the disease you are in.  Try it.  You can find lists of registered Practical homeopaths.  Shop around, don't settle for the first one you find.  Make sure they are registered and have at least 2 years of experience after their degree in Homeopathy (or specialisation) really?  if it "cured" you.. why don't you tell us what she gave you??  what "remedies" took you out of the hold of the nasty RA disease?


I also have IC but I have Psoriatic Arthritis and not RA but they are treated the same.  I was diagnosed 3 years ago and was immediately put on Elmeron and Urelle.  After taking Elmeron and changing my diet I am doing very well.  As you know it is so painful and I still go to the bathroom too many times a day.  I am not currently on Elmeron but I do have flare ups and I usually know what brings it on.  When this happens I will go back on the Elmeron and watch what I eat and drink and it usually responds to that.  I am on Humira and Methotrexate with no problems with the IC.  I hope you get some relief and know that it does get better.  I know when I was first diagnosed I thought the pain would never go away.  Take Care, Sandy
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