wegeners granuolomatosis any words of encouragement??!!

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hi all

diagnosed in early july and i believe very early with this disease which i had never heard of it before! it manifested itself as an ear problem in mid may and was initially treated by my GP's as an infection but after 3 seperate prescriptions of antibiotics there was no improvement and so in june i was referred privately to an ENT consultant. More and stronger anti boitics prescribed - another failure so within a week i had a CT scan which resulted in a Mastoid operation on my left ear to clear an infection - I also had a grommet inserted. The operation cleared my pain but i remained almost totally deaf in my left ear and still do. The ENT guy had sent material from my ear and bloods to the path lab - the result was that the bloods showed high ANCA levels and so i was referred quickly to a Rhuematologist who confirmed WG and i was immediatley prescribed steriods (prepnisolene) initially at 60mg per day but reducing by 5mg per 14 days so currently at 35mg.. on 26/7/11 i started a 6 month course (1 session per month) of chemo (cycloproshamide) and to date have had 3 sessions. I am told that i should regain my hearing in time and that the disease should be put into remission and be held there by further medication.

To date though i have felt no benefit from the steriods or the chemo and my hearing seems to be deteriorating. I am permanently fatigued and totally without energy although i am suffering no other side effects from the chemo. Looking at other \"posts\" it is clear that i am fortunate in being diagnosed early and that the disease had not spread to other organs for i read of a lot people who seem to be in far worse condition than me. Possibly because i was diagnosed early i maybe iexpect early improvements - am i being impatient? anyody out there with any words of advice, encouragement or with a similar experience that they can share. Also anyone with a similar hearing problem and was their hearing recovered - my excursions into this site anmd others in the USA don't exactly give positive feedback with regard to this!

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  • Posted

    Hi Cliff,

    I didnt start to feel better until the Cyclophosamide ended.. then I would have at least 1 good day in the week which slowly became two then increased as time went on.. It took a good year to get back to feeling normal.. Dont rush the recovery as it will set you back..

    I now am fit as a fiddle and I do look back at how ill I was but so I can remind myself of how far I have come.. Take care and be patient.. It for me was a slow process.. xxx

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  • Posted

    Hi Debbie,

    thanks for your encouraging reply.Consultant friday just to check that out. looking at other experiences I feel lucky and certainly hope that I follow the same route as you did. I hope everything goes well for you in the future. I had a review with my medical team on Mondat and they assure me everything is on course for a recovery but also tell me that i shouldn't expect to see any improvement until my course of chemo is finished. They also say that as my bloods indicate that the steriods are holding the disease if i am losing hearing it probably isn't related and so i am seeing my ENT Consultant friday just to check that out.

    Thanks so much again

    regards

    Cliff

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  • Posted

    hi cliff,

    as debbie has said dont rush things. i too expexted to feel much better as soon as i started chemo and it just did not happen. i had my chemo in 2009. i was lucky as i had it for a while before an eye specialist picked up on the fact that i had w.g. i also had ear infections and a loss of hearing i still now have my selective hearing days or that is what my hubbie calls it. i have my ups and downs but life is good, i was under the impression that a couple of chemos a pat on the head and i would be back to my normal self in a few weeks, its not all doom and gloom i still work and live life as much to the full, give it time talk to people on this site as it does help to talk to people who have w,g. take care let us know how you go on

    jill xx

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  • Posted

    Hi Jill,

    thanks for your words of encouragement. I,m very quickly learning that I've got to be patient - and the more i read of other WG sufferer's experiences the more i realise just how fortunate i am to have been diagnosed so early and before the disease had advanced further. My visit to see my ENT consultant last week was positive as he says i am not losing hearing in my right ear.

    Seems your hearing has returned at least to some extent and that you are in remission? Did you suffer in one or both ears and just how bad was it for you? When you say you have \"selective hearing days\" is this some form of temporary relapse and if so can and how do you control that - i see from some posts that people say a single dose of 5 or 10mg of steroids seem to work for them if they have a temporary relapse? My wife and I like to travel and obviously all of that has been put on hold for the time being with several flights cancelled. Have you flown since you went into remission - if so how was that experience?

    How many sessions of chemo did you have? Are you still on steroids - what dose?

    I'm sorry you also had problems with your eyes, has that been resolved?

    So many questions - hope you don't mind!!

    Best wishes and thanks again.

    Cliff

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  • Posted

    Hey Cliff.. I am now on 100mg Azathioprine and 4mg Steroid which maybe reduced again on Thursday...

    As for travel.. My Pal has had WG for 28.5 years..2 kidney transplants... she was on dialysis for 8 years waiting for the 2nd one.. She just booked ahead to the hosp.. Now she doesnt need to and travels safely everywhere... hope this is encouraging enough for you.

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  • Posted

    hi debbie,

    thanks for that - hopefully I'll get my wings on again soon. What was your experience of WG and how are you getting on?

    cheers

    Cliff

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  • Posted

    I was fit as a fiddle . had a small yukky chunk of stuff in my left nostril for 2 years but I just had to blow it out daily.. no problems with my 2nd pregnancy.. Had him then moved into my newly built house.. Felt tired but I thought it was the move and a new baby.. my eldest son took a sick bug then I did.. he got better I didnt.

    The bug feeling went but I got tired out. sore joints, night sweats, small nodules on my elbows, nose bleeds, cough, coughing blood, no appetite, weight loss sickness, I went yellow and couldnt pass urine.. I went to the Dr who was a Locum. She said that I was post natal and needed my kids taken away for a few days to rest... normally I would have argued that but I was too weak.. I went back to a more experienced GP and got bloods done.. I was told to get to Aberdeen hosp. Renal unit.. I was in acute Renal failure... My baby was 9 weeks old and I was fighting for my life..

    After Chemo 3.5 months, Pred, Plasma exchange, biopsy, transfusions, I slowly regained strength.. I had a breakdown after 3 months and had to go into the local hosp to rest.. I thought I was going to die and leave my boys.. I got in touch with others and they helped me the most.. I have had WG since Jan 2009 and I would say a year later was my turning point.. My marriage failed and I lost my home but as I cycled alot in the hills I thought Im getting fit again.. I bought a new road bike and built up slowly my fitness.

    I am now in a cycle club. I can cycle good 50 mile rides and have been raising money for research at Abdn University.. I am doing the E'tape Caledonia in May to raise cash again... I am very fit very well apart from when I do pick up a cold it can quickly go into my chest..

    Cycling has made me physically and mentally fit.. Well Im off to Aviemore for a camping trip with the kids.. Life stopped for me for a year but I make the best of it now. WG will not stop me having a life.. I do get tired but I am a single Mum of two small boys, I work nights so I blame that not WG.. take care Im in hosp Thursday so Im hoping to have another Pred reduction..

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  • Posted

    Debbie,

    your experience and the others I have read on this site make me feelike a wimp!! Thank god I was diagnosed early with so few minor symptoms and that WG hadn't progressed so far as it has with others including you! Life has been so so difficult for you and you are such an inspirition by getting up and fighting back with such fantastic determination. Good luck with your cycling efforts and enjoy your camping trip with your boys! I hope your wish for a Pred reduction is granted on Thursday. Your experience and your attidue in going forward are words enough of encouragement for me - I hope things continue to improve for you.

    kind regards

    Cliff

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  • Posted

    Hi cliff,

    both my ears were bad and sometimes i still get that i cant hear so well hence the selective hearing and sometimes im fine. it feels like i have been underwater for ages and they need to pop. i was on 40mg of steroids for a long time then they started to recduce them by last christmas i was down to 5mg, but i took ill in feb with my kidneys and they put me back up to 15 mg for a month, i have since the beginging of oct been on 2.5 mg its been 3 and a half years now that i have been on steroids. i had 10 sessions of chemo before i went onto azathioprine (150 mg ) and i did not seem to benifit untill i was at the end of my chemo. having said that you mention travel always up for a challange i went on holiday while i was having chemo i started chemo in jan and went away at the end of june to tunisia now im not saying that anyone should do that and it was a bit much for me and not much of a holiday for my hubbie he spent the whole week running after me and i had to sit in the shade due to the chemo. you last question my eyes they are a lot better but sometimes still get sore and after 3 yeats the eye hospital still see me every 6 months to check every thing is ok chin up and life can be good again not always problem free but do what you can a bit at a time take care jill xx

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  • Posted

    Did anyone have trouble concieving a child after diagnosis. I have a friend who's spouse had it as a teenager and when through chemo and she is worried that it may cause issues with trying to conceive a child.
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    • Posted

      Really sorry but I can't answer your question. I haven't seen any one comment about this anywhere in the forum discussion. If you haven't already you need to put this question to the whole forum group. Good luck - I really hope you get the answer you want. 
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    • Posted

      Hi, I was diagnosed at 14 and treated with very harsh treatments cyclo & methotrexate as well as having cancer at 23. I then got married and we now have a beautiful 6 year old daughter. I will admit that I was worried carrying her to term as we're drs but I was on Imuran (anti rejection drugs also used in WG cases) and strongly believe this helped. I did fall pregnant last year and miscarried at 6 weeks maybe the Imuran did help?

      Hope this helps. Good luck with it all. Dani

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  • Posted

    Hi Cliff,

    After a few years reprieve I have just been diagnosed with the same issues with my ears. I see it has been quite a while since you posted this. How did you ge on? Did you get your hearing back?

    Dani

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    • Posted

      Hi Dani

      sorry that you have suffered a relapse which is affecting your ears. Sadly though I have to say that I didn't fully recover hearing and now only have about 20% in my left ear. My right ear wasn't affected by WG but although my hearing is deteriorating in that ear as well (my age!) I find I can hear to a reasonable level in most situations but occasionally use a hearing aid in my left. 

      Good luck - I hope after whatever treatment you are having now that all ends well. Perhaps you will let us know?

      regards

      Cliff

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  • Posted

    Hi cliff sounds like you've had a rough time never had any trouble with ears though but woke up one morning in 1994 age 32 with deviated septum(nose) and had nothing but problems with WG since done all the meds (Azathioprine,Prednisolone,Cyclophosphamide,Rituximab, and all Painkillers) throw in a couple of heart attacks with stents fitted and now Trachea Stenosis (narrowed windpipe) Waiting to go down south cambridge hospital Addenbrookes for resection op oh dear lol I live in Ayrshire so a wee trip for me but in all of this cliff my point is this I'm Still here WG can get you down but not out so hang on in there buddy you'll cope with everything it throws at you so good luck with them ears lol take care 

    Ian Anderson

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    • Posted

      Hi

      i don't consider I've suffered at all when I read other posts on this website and now especially having heard your story. You seem to have suffered more than anyone else that I have heard about. Apart from loss of hearing  I suffered nothing else since my Consultant got my meds right and I went into remission- my life is pretty much the same as before WG. 

      In getting my Meds right my consultant initially prescribed Azathioprine and I reacted badly to that so he prescribed Methotrexate and Prednisolene. He is currently reducing Prednisolene and hopes to have me off that by early next year if my monthly blood tests don't show an adverse reaction. You don't mention Methotrexate - has that ever been prescribed? It certainly seems to have worked for me.

      i am pleased that you are hanging on through what has obviously been a tough battle. Good luck with the upcoming op in Addenbrookes, I know it is a long way to go but to what I hear is a really good place. Let me know how you do. Good luck going forward 

      cheers

      Cliff

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