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Thread: Still don't know

  1. #1
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    Default Still don't know

    Well since November 2015 with what started as chronic diarreha that only lasted about 2 weeks but put through a battery of test blood, CT scan, upper and lower GI scope, MRI, ENG, sleep study and many more I finally went to doctor that had some Wegs. specific training. At this time he does not think it is Wegnener's but I have been diagnosed with Crohn's. However the Ct should spots on my Lungs and liver which my primary doctor feels brings us back to Wegener's so still not sure. I have researched and found people with Crohn's can show a positive ANCA test. In November my Sed. rate was 86 and my CRP 2.7 both almost 3X normal. I also have severe iron deficient anemia and sleep apnea along with major balance issues. The ENT could find nothing in inner ear abnormal said it could be neurological. From what Ive read it seems Wegener's and Crohn's can mimic each other. Any input would be welcomed. Have had 3 prednisone quick tapers that did help but right now all doctors are reluctant to do long term Pred. Just wish we could find and treat the right thing. There are days I would give anything to just feel BAD instead of Terrible. Thanks for letting me vent. Only those with chronic conditions can understand the daily struggle.

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    You've been through the mill - a couple of times. Have any of your docs given consideration to the concept that you could have both Chron's and Wegs? Hell of a jackpot, but it's possible I guess.

    Hope they can treat you competently soon so you get to feeling not just bad, but better!!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    i only have two ideas about this: 1. there is a test called PR3 that is positive in Chron's disease I've heard so that would be a test you could ask for (it is also positive in Wegs). 2. I have also been told, in my case anyway, that what appears in blood work as anemia when you have a high sed rate/crp no. is the bodies defense against inflamation and not necessarily anemia. There are additional tests (ferritan or some others, not sure) that have to be performed to determine whether your body has an iron shortage or is just responding to inflammation and hence not in need of treatment (and in fact iron pills can be dangerous in this case). If you google anemia inflammation you might be able to find something about what I'm trying to talk about!

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    oops sorry I confused ulcerative colitis and chron's disease. I meant that PR3 is not usually positive in Chron's disease

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    The best advice everyone gets is to find an expert in Wegs who can help determine the diagnosis and start proper treatment. The Vasculitis Foundation has such a list. They (the experts) can also consult on treatment too which is advertised as being no charge.
    Last edited by drz; 04-29-2016 at 11:35 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

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    I'm sorry you are still not finding the definitive answers you need and are still miserable. I agree with drz that consulting with some higher level experts in vasculitis, and Chrohn's, too, would be in order. It could be a mistake to take the word of just one person with some training in vasculitis.

    Interesting what LisaD1 mentioned about the iron deficiency anemia and that a high SED or CRP reading can give a false report of this. I have been currently diagnosed with this and am taking high potency iron pills 3x/day. I did have the additional tests she mentioned. My SED rate has been around 35 for awhile, not low, but not terribly high. So I figure I really do have the anemia. No blood in stool or urine. So just taking the pills for 3 months, about halfway through, and see what happens. I currently have a fair amount of fatigue but this hasn't been true throughout the treatment, so I don't know that it relates to that.

    As for vertigo, I was having a lot of trouble with it but still not as bad as yours (if you are the one I'm thinking of with it a constant thing). The meds I was taking (meclizine and lorazepam) were perpetuating it. I finally tried quitting caffeine, and it worked! I was able to get off the meds and have had no vertigo for a month or two. I hate giving up caffeine, and now have been able to use a little, but need to go very easy on it, no daily morning coffee taken for granted, since it seems to be a cumulative thing. I know there are many causes of vertigo and they are hard to pin down, so this might not work for you. My ENT said I might have Meniere's disease but we would evaluate over time by my keeping a journal.

    Best of luck at finding some answers, and I'm glad you took the chance to vent! That's what we are here for.
    Anne, dx'ed April 2011

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    Hi. I have wg in the colon. My gasrtro doc said that it looks much the same as Crohn's and that the treatment is also much the same. Means mtx and pred if mtx is enough. If not, then rtx and pred. Mtx never worked for me so I am on rtx IV every 6 months. Also on pred daily for couple of years. Mostly on 5mg. In flares on more.
    If your diarhea stops once on high pred it is also an indication that it is wg/Crohn's.
    C-anca can be positive in both. Pr3 is a derivative of C-anca, so it can also be positive in both. Anemia can be wg symptom.
    Also check for gluten and lactose intolerance.
    Be careful with what you eat and drink. I am on a strict diet otherwise it is impossible. Make a diary and check which foods you can bear and which not. Also be careful not to eat in not enough clean places. Germs that dont bother others can be nasty with us. Drink only putified water. No additivies, no spicy food, no oily food, no perservatives, no food with lots of fibers etc. Better eat small meals over the day.
    If you are on antibiotics then it might make it worse. Probiotics were another disaster for me but worth trying. In a day that you are at home.
    When its wg in my colon and not a reaction to food or virus, I have more wg symptoms, like joints pains, coughing etc.
    Hang in there. Find a good dr. & please update us.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    My last SED rate was down to 56 additional test confirmed Iron deficient anemia. Am on iron supplement 3x daily. I also take folic acid as the Sulfasaylazine depletes this. Having a second sleep study to fit and adjust the pressure of the CPAP machine. ENG test confirmed abnormality in left ear that may be causing balance issue. Am waiting for ENT to schedule appointment. I have also tried giving up all caffeine as it also aggravates Restless Leg Syndrome but didn't realize how many things have caffeine in them. Spine Dr. is sending me for an injection that deadens the nerves as they exit my Vertebrae if that helps they may go in and burn them. They will repeat the lung scan in December but the Liver scan will do on Aug. Hopefully all will work out. Thanks for the feed back.

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