Since I got such a quick response to my first post I thought I would try this one out on ya'll (yes, I'm from the south). I have had lupus for almost 30 years with a list of symptoms and various system involvements as long as your arm. And now it seems I may be adding interstitial cystitis to the list. I have all the classic symptoms but have tested neg. for it twice (much to my urologists amazement). I was wondering if there is a lupus connection or am I just lucky (!) enough to get this on top of lupus. For those who have never heard of it (I was one too) it is an extremely painful bladder disease that feels like you have perpetual urinary tract infection. I described the feeling to my urologist as trying to pass a porcupine and it gets stuck just as it's about to come out. The walls of the bladder become ulcerated and suseptible to burning from the acids in many foods. There are a boatload of other equally nasty symptoms that go along w/ it. Most doctors think that it is autoimmune related.
Anyone else have any experience with this? I am on pyridium, ditropan xl, and pain meds. for this. I have already had one heperin instillation (yuck!)and am trying therapy for pelvic floor muscle dysfunction.
(Southern belle here too!)
I was dx'd with SLE about three years ago. Even before that I've had UTI's/bladder/kidney infections regularly. Was doing everything possible to curb them including drinking lots of water, cranberry juice, using special wipes after urinating, urinating after sex but alas, I had a UTI at least once every other month - and often took several courses of antibiotics to fix it. I even went several months w/o sex - and STILL got 2 UTI's.
Saw a urologist in March who did a cystoscopy on me - said that everything looked ok, just a couple of polyps in my bladder, but no explanation for the problems. She cavalierly said that it was interstitial cystitis endemic to my lupus. (My response - what can we do about it?) She said nothing but treat them as they occur. I'm 31. Feel it is fricking ridiculous. My problems are nowhere near as serious as yours, but I know what you mean.
I've got a lot on my plate healthwise that I'm trying to deal with that are higher priority-wise, but I plan on seeing another urologist and getting a 2nd opinion. I'll keep you posted...
Have you considered seeing a hematologist for a different perspective? Maybe one could uncover something your other docs have missed...
Speaking of pyrdium - I have a trail of "litle yellow spots" on my carpet leading to my bathroom. (You'll know what I mean)
[This message has been edited by scbagrrrl (edited 08-02-2002).]
I've already gotten several opinions. The consensus is that IC is as vague at times as SLE. I was pretty much told the same as you--treat the symptoms. I'm going to give the therapy for pelvic muscles a shot although I'm not convinced it will help all the symptoms. You were probably told that People with IC are suppose to avoid foods that are high in potassium, citrus, and acidic stuff, one of which is cranberry juice, contrary to the fact that it is good for UTI--very bad for IC. Thought I'd mention it anyway.
Just wondering department: I'm new to this board's format--what does it mean when it says "edited by..." at the bottom of a post?
I had a lot of bladder infections through the years and am a senior citizen . I was diagnosed with Interstitial cystitis 4 years ago and now have been told that there is a connection with that and auto immune diseases. It is only diagnosed correctly by having a cystoscope under anesthesia. It is correct that any acid foods will irritate wall of bladder. I get Rimso treatments about every 3 months.
I was just diagnosed as having Lupus but question it because I have no blotch on my face. I have joint pains, tiny hives, itching, bruises, sweatings, chills,awful burning feeling on tongue, and all over body- mostly arms.
I would really like to know if anyone has these symtoms.Thanks.
How was your lupus diagnosis made? Did they do the proper blood tests or go by symptoms along. I think a combination of the two is best. I have never had (in 30 years with lupus) had the rash on my face--only some slight redness and irritation under the eyes whick comes and goes. I am feeling that IC and lupus are connected and possibly play off each other.
Glori, Thanks very much for answering. The diagnosis was made by a rheumatologist with blood tests and what I told him. He said its Skin lupus. He prescribed Elevil and Plequinil. I havent started the meds yet because I have to see an eye doctor to get a baseline on my eyes. I understand that the eyes have to be tested periodically to see any changes in color, so am a little concerned about that.
What meds do you take? Syl
I've taken Placquenil for almost 29 yrs. It has done a pretty good job for me. I get my eyes tested every 6 months. I also take Celebrex and Neurontin for joint, muscle and nerve pain and inflammation. I see an immunologist at least once a year. I have the systemic form. Let me know how you make out. I know how scary it can be at first.