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Thread: just diagnosed and got lots of questions!!

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    Default just diagnosed and got lots of questions!!

    Hi All,

    I'm so glad ive found this website, and people that know what wg is without me having to explain!!

    I have just been diagnosed with wg after suffering with sinusitis and ear problems since may, its been a bit of a nightmare to be honest but im sure all of you have had similiar experiences!

    Im 27 female and i live in the uk with my husband and my 2 children who are 2 and 4.

    I have currently been on pred 60mg for about 4 weeks now and i feel 'normal' no pain, fuzzyness or runny nose! its amazing!! and on wednesday i have started mtx taken weekly, 10mg increasing to 20mg over 6 weeks and my steriods are reducing 10mg per month from now on.

    Not really sure where to start with all my questions really.....

    Firstly i appreciate that i may be in denial and the fact the steriods are making me feel so great after feeling so ill for the past 6 months, but im finding it hard to beleive that i really have this horrid disease. My kidneys and lungs appear unaffected and i have had a chest xray and all looks fine. But i have had no biopsy which i keep reading about, is this something all of you guys have had? they have diagnosed me on the fact that i have high ANCA levels and that i am responding to treatment well, after 1 week of pred my bloods showed no sign of inflamation apparently.

    Also im really concerned about being over medicated for a condition that is milder than usual, the side effects of the medication scare me, and the fact that im probably looking at a lifetime of problems due to the medication not the actual disease seems a little hard to get my head around. As it hasn't effected my kidneys and my lungs is it likely too in the future? i have always suffered from mouth ulcers, nose ulcers and fluid in my ears so i feel it is something that i may of been living with for a long time, until the major flare with my ears in may.

    Im a naturaly curious person and id really like to find a specialist (anywhere in the world! the american research seems a lot more indepth than the uk) that really understands this disease and maybe find out a little more about how it will effect me and the treatment i should be taking. Im currently under a rhemetologist that has treated other wg suffers before but with much more advanced disease. She has said that i will not be looking at coming of the mtx for at least 5 years, and she aims to keep me on it for 10! this seems so long, is this normal? Do you know of anywhere i should be looking to find a specialist?

    Also for you guys living on mtx all the time, do you feel well, or do you class yourself as an ill person on treatment? i have got to accept that i will always have this condition, but im struggling to find answers to whether i will always feel different, or i can carry on with my life hardly noticing it! im nervous about the steriod weaning as im sure i wont feel this well without them, i was on steriods for facial palsy in the summer and once the dose reduced i plumetted back to square one, but the course only lasted 3 weeks then.

    I understand what i am asking is how long is a peice of string and everyone is different, i'd just really like to hear how you all get on day to day with this and what changes have happened to you due to this.

    I hope i dont appear rude in asking so many questions, its just one minute i feel fine and then i remember that i have this condition, that is likely to seriously reduce my life expectancy and i find that so hard to understand!!

    Any input will be greatly received and i hope to get to know you all better soon

    thanks

    Jo

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    Welcome. It sucks you have this disease but at least you got diagnosed now.

    With the pred, you should be tapering now 5mg per month until you get to 10 then a slower taper is in order. Some docs are saying an even faster taper, but I'm not so sure.

    I think the UK research is prob just as good as the US. My doc is from Birmingham and is one of the leading Wegs docs in the world.

    As for life expectancy, I would say most Weggies go on as usual. We might have a few years cut off but not that much.

    Are you on an acid blocker like Nexium to protect your stomach from the pred? That is a must.

    Feel free to ask any questions or just rant any time you like. We understand. We are one big family.
    Phil Berggren, dx 2003

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    Welcome! Sorry it's under these circumstances that we have to meet. You have most certainly came to the right place. I was diagnosed Oct. 2011 and it's in both lungs. I started out on prednisone, bactrim and Cytoxan. I'm still on all meds and hope to come off at the end of the year.

    Ask away. These guys on this forum are good and helpful! More so than most docs I've met. I'm still in denial taht I have Weg's, it's a very odd feeling.

    Anyway, good luck and there are several on here that will answer your questions. Since I'm still fairly new, I'm still learning as well.

    Take care!
    "Never go to a doctor whose office plants have died." - Erma Bombeck

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    Welcome, Jo! We are all grateful for the existence of this forum and I'm glad you found it. We would be so much more in the dark without it. The beginnings of your illness leading up to diagnosis sound so familiar. I'm glad you have no apparent lung or kidney issues as yet. I had lung issues as well as sinus ones, so was put on CTX, which would have been a good one to get to skip, if I only had sinus issues like you. Now I'm on 10mg./wk MTX which is a pretty low dose, but even that makes me quite fatigued for a few days after taking it. I don't know how long I'll be taking it. From the way it sounds, you started improving fast when just on pred, which is a good sign. It doesn't sound to me like you are being overmedicated, though I agree the pred should be tapered soon. Not that I'm any expert. As for the high ANCA and lack of a biopsy, it seems plausible you could be dx'ed that way, but others can answer that better.

    Looking forward to hearing more from you!
    Anne, dx'ed April 2011

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    Quote Originally Posted by jsmith View Post
    Firstly i appreciate that i may be in denial and the fact the steriods are making me feel so great after feeling so ill for the past 6 months, but im finding it hard to beleive that i really have this horrid disease. My kidneys and lungs appear unaffected and i have had a chest xray and all looks fine. But i have had no biopsy which i keep reading about, is this something all of you guys have had? they have diagnosed me on the fact that i have high ANCA levels and that i am responding to treatment well, after 1 week of pred my bloods showed no sign of inflamation apparently.

    Also im really concerned about being over medicated for a condition that is milder than usual, the side effects of the medication scare me, and the fact that im probably looking at a lifetime of problems due to the medication not the actual disease seems a little hard to get my head around. As it hasn't effected my kidneys and my lungs is it likely too in the future? i have always suffered from mouth ulcers, nose ulcers and fluid in my ears so i feel it is something that i may of been living with for a long time, until the major flare with my ears in may.
    Pretty natural questions there. I would say don't be concerned about over-medication if the meds are working. While it hasn't affected your kidneys or lungs, it could if you don't get it controlled. It's a weird disease and doesn't follow any rules. Some people get dreadfully ill, others are less so, but generally still pretty miserable when it acts up. Regardless give yourself time to understand how it affects you and don't underestimate it. That said, a lot of people seem to get in remission and do quite well, so don't get too down either.

    I've had this a bout 2.5 years now and still have a million questions, so don't fret about asking
    ~ Bob

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    Welcome Jo,

    I'm glad you found us. I hope we can help as you deal with this stupid disease. Your diagnostic process sounds similar to mine - a process of elimination. When I became ill in December 2010, I had rarely been sick, but I went downhill pretty quickly and spent a week in hospital in January 2011. When I was admitted, the only thing they ruled out right away was cancer (whew!!). They thought I might have TB or some type of pneumonia. When none of the other possible diagnoses matched my symptoms, they saw the high ANCA test and zeroed in on WG. When I asked if they had another possible diagnosis, they said no. They explained that the risk of treating me for WG and me not having it was pretty low - and that if I didn't respond to treatment, they would have to figure out what else it could be. I responded pretty well to treatment and enjoy pretty good health today.

    Many doctors use MTX as a maintenance drug after a medicine-induced remission is achieved. Initial treatment at disease onset is usually cytoxan or rituxin for 4 - 6 months plus prednisone and bactrim. My current meds are 15 mg/week of MTX, 7 mg/day of pred, and a bactrim tab on M-W-F. I'm having no issues at this point. I began the year at 40 mg/day of pred and have slowly come down to 7. My rheumy wants me to taper at 1 mg/day less every two weeks. I'll continue that as long as I'm feeling good. I'll call her at the first sign that all isn't well - especially after I try to get below 5 mg/day. My rheumy also said not to ask her about coming off MTX for at least two more years.

    Some things to be concerned about with pred that the others didn't mention is that with long-term use, you may experience a lessening of bone density - osteopenia or osteoporosis. I take a daily calcium and vitamin D supplement upon my doc's suggestion as I do have a little osteopenia.

    I took a look at the Vasculitis Foundation website (EUVAS The European Vasculitis Society) and found that there is a WG specialist at Addenbrooke's Hospital in Cambridge:

    JAYNE, DAVID, M.D.

    Box 118, Renal Unit
    Addenbrooke’s Hospital
    Cambridge CB2 2QQ
    United Kingdom
    Phone: 44-1223-217259
    Fax: 44-1223-586797
    www.vasculitis.org

    I know nothing about this doctor, but perhaps some of our friends in the UK can enlighten us.

    Good luck, and don't be afraid to ask questions, etc.
    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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    Hi Thanks for replying

    Quote Originally Posted by pberggren1 View Post
    . My doc is from Birmingham and is one of the leading Wegs docs in the world.

    As for life expectancy, I would say most Weggies go on as usual. We might have a few years cut off but not that much.

    Are you on an acid blocker like Nexium to protect your stomach from the pred? That is a must.

    Feel free to ask any questions or just rant any time you like. We understand. We are one big family.


    I am on Omnaprozol for my stomach, but i think this is making me feel sick, and was going to ask if there is anything else i can take instead.

    You also mention your consultant is in birmingham? could i have his name, as that is pretty local to me and would like to see someone with experience of this disease, even if they say the same as my current consultant, it'll just stop me from fretting!!

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    Thanks Pete, i will look into all that,


    Another question is that i have reduced my steriods on wednesday and now i have pain when i sneeze again (ive become very sneezy again!) and my ears even tho not painful and i can actually hear a little better today, (im stone deaf in my left with little hearing in my right generally) just feel a bit fuzzy again, should i worry about this? or just give it time to adjust to the different dose of medicine. I think i may be coming down with a cold, but not sure!

    I have an appointment monday with my ENT consultant about my ears, but feel hes just going to dismiss me from his clinic now as im under rhemetology, does anyone else here suffer from deafness, and if so has it improved at all, i cant find any answers to if i'll ever hear again!

    Ive been made to feel like such a neurotic fool with the hospitals and consultants leading up to diagnosis the last thing i want to do is 'bother them for nothing' after that is what they said i was doing for the past 6 months until this diagnosis a few weeks ago!

    Im also on Calcius for my bones, but i keep forgetting to take it!! must try harder on that one!!

    Thanks for all the replys tho, still getting my head around the fact that there is no definitive answers and thats just the way it'll be, but positive to hear from so many of you.

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    Many of us here have lost our hearing to Wegs so a quick response to any hearing loss is very important since the best chance of restoring it comes with early treatment. I lost all my hearing and balance in right ear and had poor hearing in left ear already and that is a big handicap. High steroid treatment is usual response to try save hearing.
    You also need vitamin D to help absorb the calcium There are several options to prevent GERD. I found protonix works best for me. 40 mg twice a day for me.
    Good luck.
    Last edited by drz; 11-11-2012 at 11:31 AM.

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    i didn't realise hearing loss was so common, can it be fixed at all!! im so fed up with not being able to hear my children speak to me, i keep thinking it'll return, but ive not been able to hear since may :-(

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