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Thread: Hi all nice to meet you this is my story..

  1. #1
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    Default Hi all nice to meet you this is my story..


    I was just diagnosed with Wegenerís granulomatosis on 8-7-11.
    I have been in and out of er and dr visits since oct last year. I am glad to have an answer we thought for a wile I had rheumatic fever or rheumatoid arthritis and after another more blood test and hosp stay we found this out. I am not crazy there was some thing wrong with me. Has any one else been treated like the were making all this up as well? Well we are trying to get approved for the ritual treatment for me and cant start it till the 19th if all goes well I have a fungus growing in my esophagus we have to clear up first. Now I have been reading all about this illness and drugs. But I am still feeling lost and confused with all this and how it effects us. How bad it this illness compared to others. How do you describe a rare illness to family and friends and companies so they understand? And is it normal to feel this emotional all the time I never in my life cry at the drop of a hat and pride myself of that. But now I cry more than I donít. Oct last year I got really bad joint pain in my knee and then it was gone. Pain came back and kept moving to different joints. Well one night it was in my chest and left arm, and my family has a bad history malignant hypertension (mom brother coma died at 29 from it. Mom trip bypass at 55, and maternal grandma quad bypass at 65.) so of to ER they check heart every which way sent me home clear with a diagnosis of reflux and heart burn. And on the way out the door said your white blood count is high you might have a UTI see your dr. Few days later I go see my PCP about UTI and it just so happens the pain still there and has moved into shoulder. Dr could no believe how swollen and warm to the touch my shoulder was so she ran blood and urine test. There was blood in my urine and my white count was off the chart so she ran a test to check for any thing auto amine and sent me home with pain killers until tests came back. Few day later its back in my chest and arm but now I cant breath. So off to ER they were treating me like the only thing I wanted was pain killers. Good havens I barely touched the ones my dr gave me, can be drugged up with a 5 year old running around the house loll. Well I told them what we were doing to my Primary care physician and they ran my blood seen the count and it was ever higher. There attitudes changed and patched the pain and told me to see a rheumatologist. So back to my PCP and the auto amuin test was positive. Off to him I went so from February to last week we have ran tons of blood work and all the autoimmune were neg but I did show as if I had rheumatic fever that was going away so we patched the symptoms thinking it would go away like RF should have but they did not. The test were one place the body was some were else just confusing everyone. I went fishing with my sister, now mind you I am pale skinned with red hair and green eyes so I know me and the sun donít get along. So I sit at the lake in pants long shirt big hat spf 80 sun screen in a shade tent and still got blister burnt/?? Ok some things wrong here and a funky rash showed up on inner thighs . Now back off to the PCP and sent off to the rheumatologist for this rare test that takes longer to process than others? That weekend the chest pain started and rheumatologist sent me to ER and left er with asthma and reflux. Ended up in ER next morning and guess what the blood test came in and I have a positive Wegenerís test. So the dr wants to start the ritual treatment. Cant so that yet at hospital I get admitted for 5 days I got a bladder infection thatís giving me a bacteria infection in my blood. And a yeast infection down my thought cant start any treatment until after im off the antibiotics. So on the 19th or so depending on if the drug companies approves it? ( and I donít get it why is it the drug company that decides if I get it?)
    my team of Drs thinks the ritxan treatment would be the best opt for me.
    So from what the dr has said and from the drug companies web site the way this works is.
    The drug company get all my info from the dr, hosp, ins, and wages. Then they look at me and say ok physically you do or do not quality. And between your ins and you, you can or cant afford this treatment. So if they get to decide if I get this treatment or not I just donít think thatís right. I know its an expensive treatment I looked it up and its about 8000 and up each time you have it most people I think get it once a week for 4 or more weeks. But this just seams weird to me.
    I had my second treatment Friday. My over all pain with meds has gone down from 8 daily to 5 so thatís an improvement. But I am worried my feet and left hand and I am left handed, the tingling and burning has gotten worse and I cant feel the skin and first layers of tissue I have cut my foot open did not notices till I seen blood, and burnt my finger with out noticing it, and well today I stood up and rolled my ankle did not feel it till my ankle was completely side ways and felt it in the bone not the skin or muscle. Now my foot it red and twice normal size but I still cant feel anything. I cant balance on my feet since I cant feel them. Anyone else have or have gone threw this?
    Went to dr. and itís a hurry up and wait. Just wait ad see for two ore weeks to see if this treatment works. Then at that time we will decide if I need the next set of chemo treatment that will make me lose all my hair, be sick, and infertile yeah!!!! And then decide if heís sending me to neurologist for nerve condition study. The sinus issues might be just infection if in two weeks after antibiotics its not better then off to ent who deals with Wegenerís to see whatís going on. And antibiotics for the fungus in the throat. And upped my pain killers a lot ugg hate those things. So thatís the short version of it lolÖ one day at a timeÖ


  2. #2
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    At least you are in a city with a Vasculitis clinic that spealizes in Wegs. Another fellow on here goes to SLC, vdub.
    Phil Berggren, dx 2003

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    Welcome to the forum. You will find, as I have, that there is a wealth of experience and information on this site. This is a great place to come and ask questions and vent.

    As for your symptoms...they sound like classic Wegs symptoms to me. You mentioned that they are waiting to treat you (it sounds like with Rituxin)...have they at least started you on steroids (such as prednisone)? You will hear from most of the members on this forum of the importance of working with an experienced Wegs doctor...I believe there is Dr. Koenig at the University of Utah Medical Center. You can at least have your doctor consult with Dr. Koenig.

    Good luck with your treatment! For most people Wegener's is totally manageable disease. So don't dispair.

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    Hi Alexciasmom, welcome to the group! Your story is familiar to many people with Wegs. It can take years to get the right diagnosis and sometimes it comes too late.

    You urgently need to get to doctors who specialize in Wegener's. Regular rheumatologists are not skilled enough to take this on. As Phil mentioned, vdub has Wegs specialists in SLC and is receiving excellent care. How much prednisone are you on?

    Meanwhile, the foot symptoms you're describing are neuropathy and your symptoms are quite severe. This cannot wait. In addition to seriously injuring your feet you might do permanent damage to the nerves if it continues. Rituxan takes about 6 weeks (from the first infusion) to begin working. They might need to put you on much higher prednisone meanwhile to get the neuropathy under control.

    Here is a thread with information that will help you. http://www.wegeners-granulomatosis.c...need-know.html

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    Welcome to the site!
    ~ Bob

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    Welcome you need i find a wegie Dr now do not wait i was diagnosed nov 15 2010 just starting to feel good by the way i have red hair too and burn really easily .

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    Hello Alexiasmom, welcome to this site. As some have already said, there is a world of knowledge represented here, and everyone is ready to help and advice. Most of us have gone through what you went through, albeit maybe in different forms. It took me a year and seven different doctors before a local internist determined the real problem. As far as your feet are concerned, I lost all feelings in my feet about a month before I was diagnosed. The feelings are gone and will most likely never return. But, internally the feet itch and burn like I'm walking on needles. I also lost partial feelings in my right hand. It feels like I touch the tip of needles when I touch somethings.
    I was diagnosed late March/early April and I'm now in remission. So, I'm one of the more luckier ones on this site.
    Good luck, I will keep you in my prayers, and hope that you will get the medical help and kick WG.
    Rudi K.

  8. #8
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    Thanks all for the kind words.. i will have to check into a wegs specialist here in sl. i have now had all 4 rituxin treatments kinda feeling better. some systoms better some worse ya know how it goes. but i go back to dr next fri to deside if i get the nerv contution study done and if we are starting the methotrxate treatment. anyone have had this treatment?

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    I think most of us are or have been on methotrexate. It is the "standard" treatment at this time. Just make sure they keep tabs on liver function over time and it should be good. Definitely go to the vasculitis specialists if at all possible, they deal with the disease way more than regular Rheumatologists.
    ~ Bob

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    i will have to check into that thanks. it makes feel a bit better knowing that this is normal. as you know its hard to deal with the fact that theres no quick fix. but chin is up and hope are going up thanks all.......

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