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Thread: Dazed and confused new member

  1. #1
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    Default Dazed and confused new member

    I have been reading on here for quite some time now and everyone seems so caring and kind. I don't know where to start. I had lung cancer 13 years ago and have COPD and was seeing a Rheumy for Fibromyalgia when he decided to do an ANCA lab test in October. It came back positive for c-ANCA so he said I had Wegener's and started me on Septra for 30 days then Methotrexate which made me sick for 4 days after taking it. He switched me to Imuran, 60 mil of prednisone a day, and folic acid. I am on other meds for COPD and silent reflux, anxiety and dry eyes. I have moved, and now the new Rheumy isn't sure I have Wegs and is reducing my prdnisone to have blood work done and a biopsy of my sinuses. I feel like I have wasted 6 months of my life on meds I may not have needed, weight gain, stress and cost as I did not have insurance and had to pay everything out of pocket.
    I am down to 5 MG of Prednisone and wake up with a headache everyday. Sometimes it goes away and sometimes I need to take migraine meds. I see on this site that a lot of you have tests done while on all your meds so I am confused as to why this Dr. wants me to get off the pred. completely before doing the blood work and biopsy. I had such a bad headache the other day I went to see him and insisted I get these tests done that I felt 5MG of pred was not going to make a big deal on tests. I need to know what is going on. It seems like he wants to blame everything on sinusitis and allergies. I have a rash on both arms, stomach and back and they say this is from the prednisone. Why would I have it on 5MG and not when I was on 60?
    There is so much more to say, ask and "complain" about this is why I am dazed and confused!
    Anyhow,I have learned a lot from you members and hope to get some answers soon.

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    I'm so sorry you are going thru this. You have come to the right place for advice. I'm somewhat new too as I was diagnosed 16 months ago. The only thing that comes to mind regarding getting you off your meds is that pred keeps inflamation down and yoru inflamation markers wouldn't be accurate.

    From my experience and what I've heard on here, the best way to get the accurate diagnosis is a biopsy.

    Good luck and I hope you get moving in th eright direction soon!
    "Never go to a doctor whose office plants have died." - Erma Bombeck

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    Wanda,

    I SO sympathize with your frustration. I have been ill since Sept 2011 - and out of the blue my rheumy diagnosed "mild wagerers". I really question the diagnosis for a number of reasons and refused to go on the meds, till I get a more definitive diagnosis. A biopsy of the sinus is the least invasive - so I would advise going for that. My sinuses have cleared up too much in order for it to be effective - so I will probably have to have a lung biopsy.

    At any rate - you have found a WONDERFUL group of people. Even if I don't have WG - I plan to keep in touch with these guys. They are the BEST!!!!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

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    Wanda- Do you also have lung issues? Sorry, I forget. I would get a second opinion about the sinus biopsy in hopes that they can go ahead with that. I would not go with the lung biopsy unless it's the ONLY option. Or, if they could do a lung biopsy with a needle. From experience, a lung biopsy is not fun at all. Mine was an open lung biopsy that tuned into a lobectomy.

    Some on here may know more than me about why you can't go ahead with a sunis biopsy, but I would get more info for sure.
    "Never go to a doctor whose office plants have died." - Erma Bombeck

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    I had a biopsy of the lung and lobectomy in 1999. I think the biopsy was worse than the surgery, they kept me awake for it and I wanted to really inflict some pain on that Dr! I have read on here that the sinus biopsy isn't always reliable so that has me nervous. I had my turbinates cut back in the 80's (no one told me they grow back) and that was not fun either. I had a scope of the throat to check the laryngeal muscle to see if there was a blockage. Right now I just feel I am back to square one with sinus draining, bloody nose, constant clearing of my throat and joint pain in hips, knees and really bad headaches. My CT of the sinuses showed cysts in both the left and right sinuses.

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    Hi Wanda,
    my WG started with acute "atypical pneumonia" antibiotic-resistent. pred cleared my lungs but then my nose started to bleed. I did 2 biopsies from my nose, which was (and still) in terrible condition. they took about 10 "pieces" from the inflamtory area but the results of the biopsy were "no evidence to WG". it was in 2008. I have WG.
    there can be a problem with biopsy to nose, problem of "false negative" (=if it indicates "no WG" when there is WG). also, if you are on pred, risk of "false negative" is higher. maybe that is the reason you are supposed to stop pred.
    I think there is more : the pathologist who check the "pieces" must be someone who already saw WG. I think maybe one possible reason my biopsies returned "negative" was because it is so rare here. i never met here any weggie, and only 2 docs among 10-20 docs I saw all this years, ever have patient with WG. so if you are going to do nose biopsy, do it in a place who specialized in WG, and without being on pred at all. same about getting a treatment.
    good luck, and I hope for you they will find something easy to treat.
    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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    Hello Wanda and welcome to our family. I too have COPD and take Symbicort for treatment and Albutirol for emergencies. Although I am in remission at this time I was taking all the usual suspect meds as most on this forum. A couple of questions, how fast did you go from 60 to 5 with the Pred. Did you take cyclophosphomide (Cytoxin) at all? Last question is are you seeing a Vasculitis specialist? Last I knew the only one in Florida is in Jacksonville. If I remember correctly that is a hike from Titusville. All that being asked, anca tests seem unreliable to use as diagnosis. Which is why biopsy is necessary. Other than COPD did WG present in your lungs at all?
    Dale

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    Dale, I had CT done of the chest in August and it shows nodules but no one seems to be concerned. I was not happy with the Dr I had but was trying to stick with him because he seemed to be on the right track but was so elusive. Just do as I say...take this and you will feel better. The more I learned the more scared I became. As I said before I feel as though I have wasted 6 months of my life and now I still feel like I do not have the right Dr. It seems no one bothers to read your records. The first Rheumy seems to have dropped the ball so to speak and should have ordered a biopsy in the first place and ran more blood work. No, I was never put on Cytoxin. I have gone from 60 to 40 in January and then 40 to 5 starting in March reducing every 7 days by 5 MG. I haven't seen a specialist but will def. do so if this turns out to be what I really have. My Rheumy said to stop the Prednisone about 4 days before my biopsy. Like I said, I am dazed and confused and just want to know what the heck I really have.

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    Hi Wanda and unfortunately welcome to our group. I personally don't think you need to be off the preds. in order to get diagnosed. They should be able to tell from yr blood levels. I am still on 5 mg. of pred a day and get my blood work done every month. You really need to check with someone that is qualified. I know there is a Cleveland Clinic in Florida , I think it's in the Palm Beach area,(don't know for sure ) but you can google it. Also a biopsy is the best way to find out ......Good Luck !!
    Life isn't about how you survive the storm, but how to dance in the rain !

  10. #10
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    Hello Wanda, and a warm welcome to the family (which seems to be growing daily) who knows what WG is about and knows what it means to care about those in need with WG. All due respects to Led Zeppelin, you aren't dazed and confused...you're asking the very questions we've all asked at one time or another. Do not feel as if you can't ask all kinds of questions...remember the docs are in your employ, so ask away! For starters, all your symptoms sound like some form of WG or an AI at least. As for the pred, someone is reading out of a book on AIs, they do not appear to be experienced with WG. Such a huge and fast drop in pred dosage can cause all sorts of things including massive headaches...many on here have complained of headaches with pred reduction, and yours is way too fast. You can be tested whether or not you're on pred...an experienced pathologist in WG would know the numbers. MTX dosage can make one ill, but to change it up without giving it a chance may be a mistake without knowing to what degree the WG or whatever has affected you...rather your dosage should have been split over a 12 hour period and you may have felt better and by now it would have taken hold if it was the correct drug. There are others of course, but they are all stronger, and stronger is not always the answer. Best to you...keep at it, and please get at least one doc who knows WG to get a correct pathology and drugs if necessary. Oh, a lung biopsy is the best way to get an accurate dx...good luck.
    Last edited by Dirty Don; 04-13-2013 at 08:38 AM.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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