just been diagnosed April 2010

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I am a 38 year old married women and i have just been diagnosed after about 7 months of constant, what seemed like at the time, to be constant little illnesses.....now i finally understand. My symptoms started after a holiday and i thought i just had a cold and was a bit run down, following this i then had a permanantly bunged up nose and ears that were popping and getting blocked. Finally went to the doctor in March and was initially diagnosed with sinusitis and was put on a course of antibiotics which i had a reaction too. Was then switched to another antibiotic but this did nothing for me either.

Was finally referred to an ENT consultant and after just one visit he suspected that i might have WG and took a biopsy from my nose and organised an ANCA blood test. Was diagnosed at the end of April and am surprised after research how many of the symptoms i had had for a while. My joints have been really painful for a while and i just though i had a problem with my knee, back and was wearing the wrong shoes as my toes were excruciating. Waiting to see a rheumatologist so am not on any medication at yet except for anti inflammatory meds whcih help a little.

I am amazed at how isolated i feel, even when i go out i am not my usual self and just want to sit quietly without getting too involved. I cannot, at the moment, stay out for a complete evening out as i get too tired and start to ache. My poor husband is also tired as i am not sleeping properly and therefore waking him up too.

Any advice would be greatly appreciated on how best to deal with this.

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15 Replies

  • Posted

    Hi,

    Sounds like you had wegeners diagnosed at an early enough stage(hopefully)

    It sounds like none of your major organs have been affected...Surprised your doc has'nt started you on medication yet... the medication is normally the same for all wegener suffers and in my case I got pain relief immeadiatly and I'm now much better.

    Read my post to see how i was affected.

    Best of luck

    Mepper

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  • Posted

    I was very much the same as you illness after illness i had seen 13 diferent doctors before they found out what was wrong with me i had chemo which went well and 40mg steroids im now on the maintanance drug and in remission, which seems to be the general treatment for it, i found it hard in the way that if it was cancer every one seems to understand, i have only just found this web site i wish i had known about it 18 months ago. beleive in your self life may never be the same again but make the most of it. i still work i worked all the time i was having chemo i had a suportive family and medical staff read up about it on web sites talk to your doctors and give it all you have got we all get to a stage of tears and why me your going to but there is life and a good one after the treatment we got a pup last year to keep me active at the time hubby had to walk him i was not strong enough now i walk him half hour every day even the mornings when i have done a 12 hour night shift keep your chin up and keep ploding along one day you will wake up and feel some what better i wish you every luck in reaching remmision its al long road i started treatment nov 2008 and 3rd march this year i was told i was in remission it was a sunny day and i felt glad to be alive best wishes jill
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  • Posted

    Hi. I've just read your message and feel so sorry for you to have contracted this disease. I posted my details on December 5th last year which you may care to read. Like other sufferers, I can't understand why you have not started treatment, because this disease needs to be treated aggressively once it has been diagnosed. I am now 84 years old and have my dose of steroids reduced to 5mg per day + 2grammes of an immunnosuppressant drug called mycophenolate mofetil. I also take a cocktail of other drugs in small doses and I have to take this medication until the end of this year, then the consultants will review. I attend the clinic about every 5 or 6 weeks, where they check my bloods etc and I have a consultation with the doctors, who think, at the moment, that I am going towards remmission.

    I wish you well and sincerely hope that your doctors get WG under control.

    Kind regards - Mo Grant

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  • Posted

    Hi just wondered if you have been started on any meds yet as all us Wegeners sufferes know tot he key to this dreaded diseae to to get started on treatment usually high dose Prednisolone with another immuno-suppression agent ie Azzathioprine, Methotrexate etc depending onthe severity of the disease. i think its crucial you get on some medicine as ap.

    Hope you are well .

    Tracey

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  • Posted

    Hi and thanks for your posts,

    I have been started on medication and have gone from being on steroids only ay 40mg - felt great on this- then Methotrexate was added and this started me off again. I am now on Mycofenalate Mofetil 750 mg twice a day and 30 mg of steroids along with a few other things and i am still getting constant ENT pain.

    How long does it take before the right meds are established?

    Can anyone advise?

    Kazz

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  • Posted

    Hi Kazz - Mo Grant here. Just read your latest message and you are on the same medication as me but a different dose. I have been reduced to 5mg of prednisolone per day, but the amount of mycophenolate motefil is greater, I take 2 x 500mg twice a day making this 2grammes per day, whereas you take 1.5grammes per day. I also take 70mg of alendronic one a week, 2 x Adcal-D3 tablets every lunch time, 4 drops of betamethasone liquid in each nostril, morning and night and 2.5mg of bendroflumethiazide. The nostril drops are to keep my nasal passages healthy, as WG started here!

    I have been advised by the consultants at the hospital I attend, that I must continue this medication until the end of this year, then they will review my case. I go to the hospital clinic about every 6-weeks, as a matter of fact, I'm going tomorrow! Expect you will be on medications for a long time, as I will, but I began to feel better a few week after the treatment started, that would have been about July last year as I was discharged from hospital about the middle of June of that year.

    You should feel a vast improvement in your health as you continue with the medication, but like me, expect you get tired easily.

    My very best wishes - Mo Grant

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  • Posted

    I see you haven't been on this forum for a while.  I know exactly how you feel.  Yes feeling ok 1 minute completely exhausted the next.   Went to the show with my husband about a week ago felt fine, got in the car and on the way to the show already felt exhausted.  I though omg will I be able to stay awake in the show?  Regarding not being the same when you go out, I can relate.  Tire easily so difficult to get involved in a detailed conversation with friends.  Also, due to it being cold and flu season and having a suppressed immune system always on the lookout as people go out sick and I have to stay away from them.  I know it sounds crazy, trying to get past this and hoping this fatigue somewhat goes away.  I've had low iron for year's so this doesn't help and meds can lower white and red count as well
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    • Posted

      I've just seen your email! Not been on-line for about two weeks. I'm the same as you, can't face anyone but close relations, then I have a job concentrating on what they talking about! 

      I'm very tired most of the time and my knees ache. Sometimes the pain gets unbearable, I have to take strong painkillers always! My wife, who is 15 years younger than me, does all the driving, I've given up my driver's licence, because I get very nervous in the car, my wife is a very good driver.

      Keep smiling and think positive!  

      Yours Mo xx

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    • Posted

      Thanks Mo.  My main concern at this time is will I be able to stay awake all day to do my job?  Yes if very tired it's hard to concentrate.  I'm scheduled to go back to work March 30; seeing my doctor next week.  I've been driving for a bit but some days just feel too tired to do anything.  Sorry to hear you are in pain.  Have you had Wegener's for a long time?  I hope you feel better soon.  Yes I have to think positive.  I will say I was feeling not quite like myself for about 2 years before I got ill but had no idea this was coming.  Was fairly active at a gym, gradually been getting back to exercise.  Cardio helps, hoping I will be back to all weights within the next couple of months as I was fairly strong before I got ill. 
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    • Posted

      Hi! Thanks for your email. I've had Wegener's for 5 years or more. I'll be 89 years of age on May 2nd this so have done very well. I'm pleased to know you are getting back to normal, you are very brave.

      Best of luck with your progress with exercise and visits to the gym. xx

       

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    • Posted

      Thanks Mo.......trying to stay positive.  Will see what my doctor's say this week regarding my bloodwork.  Thanks re exercise yes I'm tired as it is without exercise would be completely drained.  I never heard of WG before I got this, I don't know anyone who has this, as it is quite rare.  Yes we all have to try our best to carry on as we always did.  I'm hopeful that when I go back to work I will be ok.  I think I will as long as I don't fall asleep at my desk, LOL.  I have been off work since last April as I got sick then, can't retire yet and wasn't planning on it, so hoping for the best....and lots to see and so many places to still visit.   Really puts everything into perspective what is important in life, family and friends.  Take care
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    • Posted

      Btw yes 89 years old........this is good to hear.  Hope you feel better soon

       

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  • Posted

    My 15 year old daughter feels tired all the time and it gets her down, havving said that she is amazingly brave and sodiers on. The thing with this illness is apart from looking itired you look well and so the outside world can't empathise with just how rubbish you feel. We still have glimpses of the old lively enthusiastic teenager before diagnosis, but it saddens me to see the other lethargic exhausted teenager that inevitably appears regularly with Wegener's. I can only advise that like my daughter you soldier on, keeping in mind that you have people that love you and care about you, and I hope for both of you that the tiredness subsides and that life gets nearer to normal in time.

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    • Posted

      Hi - I'm very sorry to learn that your daughter's come down with Wegener's granulomatosis! Wish her well from me, a fellow sufferer and I hope she is coping ok. Me I'm happy enough now but I felt dreadful when this disease was diagnosed, the doctor didn't know what was wrong with me and happily when I was in hospital for the second time, a consultant who was visiting the ward, saw me and said she knew what was wrong with me and transferred me immediately to another hospital for treatment. That was a number of years ago now and I'm still on drugs, although the prednisolone has been stopped several months ago. I feel fine at the moment, but still get very tired. But I'll soon be 89 years of age so have'nt done too bad! I hope your daughter soon recovers from this terrible disease. Yours - Mo Grant
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    • Posted

      At this time, the feeling tired all the time/often appears to be what most of us are feeling with WG.  I hope your daughter is sleeping through the night?  If she's up to it, starting regular walking daily/bike riding etc definitely helps.  Starting at 10 min per day and slowly increasing.  My doctor wants me doing cardio every day. I'm surprised as tired as I am, and sleep is poor I'm able to do cardio for about 45 minutes but the day I take my meds and up to 48 hours after (drained just want to sleep).  I really hope your daughter feels better soon.  Maybe her meds need to be adjusted again?   Take care Shannon
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