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IC and Behcet's Disease

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  • IC and Behcet's Disease

    Has anyone heard of Behcet's disease? Or does anyone have it? I might have it but not sure. S/S are painful labial ulcers, ulcers inside the mouth, some type of eye inflammation. Testing is done by skin prick, the doctor pricks your skin and if you have inflammation in a few days, it is supposed to be a positive sign. However, there is no exact diagnostic tool. My skin test was negative but the rheumatologist I saw said that didn't mean I didn't have it. I tested negative for herpes. If anyone else has it, would love to hear your experiences, treatment, etc.
    Pain started 12/23/1989, diagnosed 1990
    I am considered severe endstage

    Current meds:
    Avinza (pain clinic)
    Vyvanse (ADD)
    Zoloft (depression/anxiety)
    Vivelle patch (hormones)
    Relpax (migraines)

    Other problems: ADD,PTSD(from years of pain),Possible Behcet's disease,migraines

    Current treatments: Botox injections every 6 months, have had 4 and it changed my life . Hospital based pain medicine doctor, pain therapist

    Things that didn't work: Almost everything: Elmiron,DMSO,diet

  • #2

    I have Behcet's Disease. I was diagnosed with IC about 2 years ago. I also have Lupus Vasculitis.

    I started getting horrible mouth ulcers at the age of 19. I am now 36... for a year when I was 19 my doctors were unable to figure out what was causing them or give me anything to help them go away. After the first initial year of dealing with them, they did ease up. Coming and going a couple of times a year. I had already dealt with severe joint pain- years earlier, of course my doctors just associated it with me having played softball for 13 years. They told me back then I needed to stop in order to ease the inflammation in my joints. Which I did. However, it didn't make the pain go away completely. Fast forward a few years...

    About 3 years ago I started having issues with my bladder. What would seem like a UTI- going in to the doctor being put on meds and doing a urine culture, the results always came back negative for UTI. My symptoms would last in bouts of 6 to 12 hours and go away... and at other times it would be days. Once I started noticing a little blood when I would wipe, thinking it was spotting. But then it hit me hard. I was peeing blood. Which landed me to my wonderful Urologist. She did her first cytoscope- finding an ulcer in my bladder. Of course she was worried, as she knew it didn't look cancerous, but it certainly wasn't normal for the bladder lining. I also had chronic bladder inflammation. She put me on a couple of different meds to help my bladder lining- which she was hoping would allow it to heal. 6 weeks rolled by, no such luck- cytoscope #2. Of course we had to get a pre-authorization to do the removal... so another 2 weeks- and my 3rd cytoscope... we removed the ulcer- sent it out for biopsy. Of course this all led to my diagnosis of IC.

    During this time, I started losing weight without trying. For me, I was estatic over... my husband and my primary care doctor told me it was too much. I was too thin. Again, wasn't even trying. So with the weight loss came the need for smaller clothes. I went from a size 12 to a size 4 im about 6 months time... but dropped 15 of that in just 2 months. In this time I got my first vaginal ulcer. I didn't think much of it... as I figured I was wearing different fitting jeans- I was just rubbed raw. But then I wouuld get another 1 or 2... months would go by and nothing... then another would pop up. Never- thinking to mention it to my doctor- kind of out of sight out of mind. If I had a doctor appt and didn't have one- I wouldn't think to even bring it up.

    This all led to chronic joint/muscle pain and chronic fatigue among a laundry list of more symptoms that I was dealing with. I went back to my primary car-e - which he thought I had Polymyalgia Rheyumatica. Nope- tests came back negative. He sent me to a Neurologist due to nerve issues- this one thought I had Fibromyalgia... and did a series of other tests that my primary care did not. In the mean time- I set up an appt with my Rhuematologist. Lab work from my Neuro came back positive with Lupus.

    I was dismissed from my Neuro - by Well, since your Rhuemie is confident it is Lupus, call me if you need me down the road. I am releasing you of my care. I had sent off for some autoimmune brochures and just checked all of them as with Autoimmune, you typically do not just have one. When I got them, I started reading through the information. One of them being Behcet's. I was like--- wait a second here! I get mouth ulcers more than 3 times a year, I have joint pain, issues with my eyes... and wait---- genital ulcers. Ulcers that are equivelent to the ones in my mouth! I decided to seek out a different Primary Care Physicain... as mine tried to tell me a lot of my pain was mental. I went to another one- brought up the Behcet's... and she pretty much laughed in my face- telling me, no way could I have Behcet's as it is a man's disease. Needless to say- I decided to never see her again. And just went back to my Primary Care that I had been seeing for years. I started having more neurological issues- so he sent me to another Neurologist- that thought I had Secondary Progressive MS. Back in for more MRI's to come back normal... so his final conclusion was Vasculitis. Since I have chronic neuropaty. My capillaries break very easily- they surface when I am in the sun/heat too long. (I live in Las Vegas, Nv- so you can imagine it is a battle here.) I took that information back to my Rheumie- and he said based on what...? Your labs don't show this or that blah blah blah. However- Vasculitis is often based on clinical findings as are so many other diseases as there is no one test that will say yes or no. We talked about my mouth ulcers- and he asked me if I get ulcers any where else- and I said yes... as a matter of fact I do.... I had one removed from my bladder as well as get them around my labia/urethra. He tossed around- maybe Behcet's... but I highly doubt it as you don't look Middle Eastern. Uh- okay....

    So, come the end of this June... after no vaginal ulcers for a couple years- 3 popped up! Got in to see my Rheumie the next day- and you know what... he wouldn't even look at them. Said that is not my forte'. Upped my Oral Chemo meds, put me on Prednisone and sent me on my way.... met with my husband after my appt- he was FURIOUS. So, I called my Primary Care... they asked if I could get into my Gyno- which was unable to do so since she was out of the country on vacation... he got me in- and looked. Said, by golly- I think you have Behcet's. Told me if they go away on the Prednisone pack then we know what we are dealing with. Of course by day 5 they were gone. Back to my Rheumie told him what my Primary Care said... and he STILL said- it is just highly unlikely you have Behcet's. Now... I had gone into my Dermatologist to have him do a skin biopsy of some rashes I was getting from my Lupus. Was explaining to him about the Behcet's diagnosis... and he told me, next time you get one- I want to see you ASAP. Less than a week later- I was back in his office as I had another ulcer by my urethra. He told me we can biopsy it... it is going to be a pain in the a** for you... but this way we will know one way or the other. So, I told him go for it. I would rather deal with a few days of pain and swelling than the not knowing. A week later, I was back in his office for the stitch removal and results... and those biopsy results came back POSITIVE for Behcet's!

    I had asked my Rhuemie about the Pathergy test... and he said- in all his years of practice... he has yet to see a positive result. They are just not common here in the US. If we were in the Middle East, then chances are it would be positive.

    Behcet's is based off clinical findings...

    Criteria for Beh├žet's disease:

    Mouth sores (oral ulcers) at least three times in 12 months

    Any two of the following:
    Recurring genital sores/ulcers
    Eye inflammation with loss of vision
    Characteristic skin lesions
    Positive pathergy (skin prick test)

    My Neurologist asked me last week when I went in and saw him... if it was possible that my Behcet's and Interstitial Cystitis had any relation. I told him I wasn't sure- but I certainly would bring it up to my Urologist in December when I see her again.

    I have not seen my Rhuemie since my positive biospy results... but you can bet I will be smearing it in his face when I see him! The wonderful I TOLD YOU SO! He did change my oral chemo meds from Methotrexate to Azathioprine (Imuran) - which is what Behcet's is treated with. He also said when I have a flare to go hit my Prednisone for 5 days- tapering down from 5 pills down to 1. Gave me a script of Kanelog for my mouth ulcers, and my Gyno gave me a script for the vaginal ulcers of a steriod topical cream.

    IF you are brave enough to have your vaginal ulcers biopsied- I would highly recommend it. They do a punch biopsy- and stitch it up. It certainly is something I do not want to go through again... but it was highly worth getting those positive results! I told my Dermatolgist- if I can be wide awake and no numbing meds and have an ulcer taken out of my bladder then cauterized... I certainly can deal with a punch biospy of my vulva. It is painful! I won't lie... I swelled up so bad. But I wouldn't change my mind if I were given a second chance to do it over. Feel free to contact me if you have any questions, concerns, etc! I am happy to help!