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Jesse
10-12-2008, 07:25 PM
For the second time in about a week I've had spasms in my bladder that make me feel like I'm going to leak urine, although I don't at this point. I don't see bladder spasms listed as one of the side effects of Imuran, which is the only new drug I've been taking. I started it about three weeks ago. However, when I Googled Imuran and bladder spasms one hit came up that said it caused bladder spasms in some people.

What I'd like to know is, do any of you have this problem, with or without Imuran? Whenever something new crops up I can't figure out if it's a drug side effect or some lovely new symptom of either the SJS or lupus. Thank you for any information you can provide.

sits_inthe_corner
10-13-2008, 03:00 AM
I haven't experianced this myself, and I would strongly suggest you high tail it to the doctor.

When it comes to your organs don't waite and wonder....hussle bottom to the doctor and let us know how you're doing.

Hugs Jesse

Good luck

Jesse
10-13-2008, 03:38 PM
I have an appointment with the RD next week and since the spasms only lasted a short time, I think I can safely wait until then. I posted this question on a couple of other support forums and it seems as though others with either lupus or SJS also get this on occasion. Rats!

sits_inthe_corner
10-13-2008, 03:56 PM
Oh joy!

Hugs Jesse

Hope you are not too uncomfortable waiting for your appointment. I've never had this happen myself. I do have a cyst on my ovary that acts up a couple of times a day.

I'm waiting on ultra sound results. I've actually gotten used to the sensation. It doesn't make me naucious any more, just makes me stop and rest till it goes away. :P

Saysusie
10-14-2008, 06:31 AM
Lupus is a disease that causes symptoms (particularly inflammation) throughout the body. Hence the name "systemic". Interstitial Cystitis is inflammation of the bladder. This condition can occur by itself in conjunction with other autoimmune diseases, such as Lupus, fibromyalgia, scleroderma, or Sjögren's Syndrome. People with any autoimmune disease are more susceptible to IC.

Symptoms of interstitial cystitis (IC) include bladder spasms (which can be very painful), bladder frequency, bladder pain, low bladder capacity, and incontinence. Very often, Interstitial Cystitis patients are wrongly treated for what their doctors assume must be bladder infections, urethritis, or "emotional" problems. Do not let your doctors start to go down this path! Don't accept the brush-off that "it must be an infection which just isn't showing up" if this has been a recurring situation for you. IMPORTANT>>>Antibiotics can actually worsen the IC or trigger bad flares of it. And psycho-babble is less than useless for what is a very real physical ailment. Stress can worsen IC symptoms but it is not the cause of them.

Many internists, rheumatologists, and even many urologists, are unaware of or do not "believe" in interstitial cystitis. Unfortunately, this is a disease where YOU, the patient, must often take the initiative to research and document your symptoms, request referrals to a specialist in interstitial cystitis, and insist on specific procedures to be done to get the proper diagnosis and correct treatment.

TREATMENT:
Some patients find relief through the bladder distention done during cytoscopy.
Tricyclic antidepressants and other medications can help to temporarily reduce the symptoms. But DMSO and/or bladder distention surgery are usually the best long-term solutions since they directly address the underlying ailment.
Elmiron (pentosan polysulfate sodium) is an oral medication, which costs around $160 a month. Side effects may include gastrointestinal disturbances and hair loss, and it may take 2 to 9 months to see improvement in symptoms.
Treatment approaches for painful bladder syndrome/interstitial cystitis. There is no curative treatment; intravesical dimethyl sulfoxide, as well as oral amitriptyline, pentosan polysulfate and hydroxyzine have differing results, with success more likely when these drugs are given together.

Limited Benefit Found In Pentosan Polysulfate Sodium (Elmiron) And Hydroxyzine Hydrochloride (Atarax) For Interstitial Cystitis. Because these treatments proved ineffective for the majority of patients, researchers do not plan to expand the trial on these drugs. But the group has already recruited patients for its second treatment study, which is testing whether the bacterium Bacillus Calmette-Guérin (BCG), directly instilled in the bladder, relieves the pelvic pain and frequent urination that are the primary symptoms of IC.

Please make an appointment with your doctor asap and let us know how your are doing!

Peace and Blessings
Saysusie

Jesse
10-14-2008, 03:26 PM
Thanks Susie, that was good information. I'll tell my RD about it next week and see what he suggests. Since the spasms have been very infrequent he may take a "wait and see" attitude and I think I'll be OK with that. I'm not looking forward to taking yet another drug for a new condition.

Saysusie
10-16-2008, 08:26 PM
Don't blame you at all. Please let us know how your appointment goes and what is decided :lol:

Peace and Blessings
Saysusie

Jesse
10-22-2008, 12:40 PM
Well, I saw the RD on Monday and told him about the bladder spasms. He had absolutely no comment but his nurse had asked me if I had seen a urologist. I told her no but that if it happens again I will. I've come to the conclusion that the RD does not get involved with any "organ" business other than doing bloodwork to check on their condition. I guess if there's a real problem I'll have to add another doctor to my ever-growing list. That's probably the best way to go anyway since a specialist would know more about the proper treatment.

Saysusie
10-23-2008, 12:22 AM
I think that it is a good idea to see an urologist about the spasms. Also, I guess it never hurts to have a team working with you, especially one that includes a couple of specialists. I have four doctors (each one a specialist), so I have a bit of trouble remembering who wants me to do what :lol:
Oh Well....such is our life

Peace and Blessings
Saysusie