WG

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I was diagnosed 2013 with WG shocking rash all over my kidneys bleeding out fatigued couldn't breath nasal issues I was fit walking 4 km everyday and now I can hardly do housework had to leave my job as a pathologist. As I have no immune system I so depressed :-(

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    Sounds bad dona I hope you are feeling better I've had WG for 20 yrs now and all sorts of probs your life will never be the same now but it's SURVIVABLE so take heart, keep taking your meds and believe that you can have a good life all the best Ian xx

     

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    • Posted

      U are amazing when was reading your story :-) I'm in Australia but my parents are Scottish lol. I'm 43 now I have 3 teenagers all girls they seen me go through alot.what sort of food can u eat to try keep healthy as I never seem to be Hungry
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    Hi Dona well nutrition is important but as long as it's balanced should be fine, I'm 52 now and it seems I've had WG forever lol I watch my diet close now as believe it or not I'm competing in an over 50s Bodybuilding show next year in June ( Mr Scotland) natural of course lol remember tons of fruit and veg and lots of water keep well hydrated good for the joints maybe a good supplement like multi vit-min should do and vit c good for connective tissue repair but you seem quite calm with your condition so long it may last for you and don't forget your prayers lol xx
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      Hey thank you for that I will get those vitamins cause I was talking with my sister about what to take that's g8 I will do that. How awesome u doing a body building comp. You put me to shame lol. I try to stay calm about it but it really can get me down as I had to stop working u was in pathology and of course no immune system so I was getting sick from other people's colds. I am cortisone still and antibiotics. They gave me infusions of retixmab not sure how to spell it cause my kidneys were bleeding out :-( for ages apparently but trying to stay strong. :-)
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      Where in Scotland are you? I been over there in my 20's I took my mum as a suprise to see her family. I loved it.
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      And my liver is damaged from it also I can get pain sometimes it's awful do you get pain from it? :-)
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      Thanks for mentioning about your Bodybuilding, this is so good to hear, good for you.  I was doing weight training, mainly for toning started back with this but nothing steady as energy low, doctor telling me to do cardio every day.  Well have to get back at it still a cough, been 2 weeks with flu etc.  My daughter is a powerlifter.
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    Hi Dona I live in Largs (North Ayrshire) from Irvine originally moved here 4 yrs ago, I had 2 yrs of Rituximab infusion did nothing for me I have had Trachea Stenosis ( Narrowed Windpipe) for 5 yrs had 4 balloon dilutions to open it which last only a few days and now they send me to Addenbrookes in Cambridge for Laser treatment which lasts about 8-10 weeks a lot better, I hated Steroid treatment was on them for 7 yrs straight gained a ton of weight but not had them for 10 yrs now hope I never go on em agn change everything about you including your mind lol but I'm sorry you seem to be having a rough time Dona I'll say a wee prayer for you, anyway take care stay STRONG xx
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      Hi Ann I hope you doing better you have been so sick I feel for you. Rituximab worked for me I hope it still working. But I just found out today I have plursey in both my lungs I had a flu now I have that not very good. It gets depressing one min u feel okay and the next you just are crappy. God bless u too you can chat to me anytime.
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    So sorry to hear you had to quit your job dona.  I was diagnosed with Wegener's in May of 2014.  I'm just going back to work tomorrow starting at 4 hours a day.  I have a very busy demanding job, I'm hoping I will be ok to work/make it though an entire day as in no time I will be back on full time.  I hear you about the housework, my energy is very low.  Exercise helps but really have to push myself to do this.  I was quite fit myself, before I got WG.  Considering I almost died in the hospital last May I'm not doing bad.  Just wondering if I will ever feel like myself again. 
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      Oh wow you going back to work your amazing :-) my job was taking blood so I couldn't be round unwell people but I would love to study at home maybe do medical transcription. I hear you about will we ever be the same, well I have had it since 2013 and I am still having my good and bad days I also ended up with depression cause I just couldn't believe it. One min I was fit and doing well and know I just don't know what I should be doing I have 3 teenaged girls and it's been hard on them I'm lucky I have them they are a g8 help.
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      Thanks Dona your funny.....well I didn't win the lottery so I have to work but was off almost 1 year and all this time thinking about will WG come back again omg, not healthy.  Oh I had really bad depression when I weaned off prednisone, especially it being the winter months.  I have a daughter she is in college, oh yes I know what you mean.  This is one crazy autoimmune disorder.  I have to get back to the gym in the next couple of days; with catching some infection and going on antibiotics, coughing etc wasn't well enough to go to the gym.  Really trying to stay positive.  Oh yes I hear you with the taking blood, on no wouldn't be good with WG.  Well you take care.  I really like music so if I start thinking too much about this WG crap I listen to my Rock videos, comedy is great......Go for a walk, really helps anything so you aren't sitting in the house too much thinking about this.  Even though we are really tired, I know go out with a friend.  Take care
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      Thank you for your reply :-) I don't believe it but I have plursey in both lungs I been in hospital I home now but still not good. I so sick of getting sick :-(
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      Hi Dona:  Sorry for my late reply....so busy since I'm back at work.

      Still have low iron,, but going up as meds put me into early menopause; but this disease omg yes it makes me so tired, affects my sleep and with overactive bladder for years not easy.  I hope you are feeling better?  Sorry to hear you have been sick.  I'm tired of being sick too.  2 weeks before going back to work ended up on antibiotics, fever cough etc and then shortly after I finished these antibiotics picked up a very bad sinus infection (know I got it from someone at work) can't prove it but I know and this person was sitting at my desk and I didn't know they were sick until after I touched keyboard etc.  Anyways, I'm on my second set of anitibiotics for this sinus infection, think it's finally going away.  Doesn't help that my immune system is suppressed with methotrexate, very strong medication.  I've been away from the gym for probably 2 months, sinus infection really been draining me and working full time. Hoping to get back on track with the gym this week.  I now take my meds on Friday after supper so I'm tired All weekend.  I just push myself as we have to go on and like I said to my husband I can't work all week and lye in bed all weekend.  It's tough some days but I remain very positive as I have to and was active before and will get back to this.  Take care

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