Hi, just found this site. I was diagnosed with Wegeners in October 2008, I had had painful joints from May 2008, struggling to do most things which is hard running round after 2 children and trying to run a pub. In beginning of Oct 2008 I began to feel ill with what i thought was flu. I had put myself to bed for a week and still there was no change then i started to develop black blisters on my face and chest. Again I didnt think too much about them and just thought i was really run down. I then developed mouth ulcers and coldsores all over my mouth this is when I couldnt take it any longer, i had been taking painkiller after painkiller very strong ones because of my arthritis and ibuprofen 600mg tablets along with codeine, i had run out of codeine and asked my other half to take me to a and e at our local hospital, saw a doctor who diagnosed my black blisters as impetigo and prescribed me some more codeine and a cream for the blisters. I didnt get the cream because the blisters looked nothing like impetigo. 3 days later I was screaming in pain so my partner once again phoned my doctor where the receptionist deemed i wasnt ill enogh to warrant a home visit from my doctor, so he put the phone down and dialed 999. I was rushed into hospital on the Friday afternoon and transfereed the day after to Hope hospital in Salford onto the renal ward. I was really poorly and didnt have a clue what was going on. I had a kidney biopsy the following day which confirmed the diagnosis of wegeners and was put onto cyclophostamide (chemo) the day after. Along with the cocktail of all the other tablets they prescribed. I was in hospital for the next 3 weeks and they had stabalised the condition luckily my kidneys responded and went from working about 15% to now at 30%. The doctor is happy with my progress for the time being and i am responding to the treatment thank god, although my kidney function had gone down again last time i had blood tests but they are not sure if it was because of an infection i had picked up, i pick a lot of infections up because the chemo supresses my immune system. I am at the moment feeling well apart from the pain in my feet, ankles and knees. Hopefully my kidneys will improve but my doctors thinks i will be looking at dialysis at sometime in the future when we dont know but, that was our main reason for coming out of the pub life so now i can rsst at home on the days i am bad.
i've just read your post and read you have 2 kids like me. I to have kidney issues. I am amazed at how this disease presents itself so differently in people. How old are you and how old are your children. Are you in touch with anyone else? Debbie X ****
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i am 33 years old my children are 11 and 7 and i havent really spoken to anyone about it i discussed it with my partner but you know what blokes r like i look ok so i must be better. At the moment i feel ok like i said its just the pain in my knees although i do get down every now and then why did this happen to me etc. i try to carry on as normal and have a tendency to burn myself out which isnt good but being only 33 and with 2 kids i try to keep life as it was 12 months ago. how did your symptoms show themselves? i am glad i have found this site it gives u a chance to talk to people who know how u r feeling.
Hi Lisa. If you go onto the posting headed Personal Experience of Wegeners That is me. I would like to talk to you at length but the Forum doesnt allow email addresses or numbers. Let me know if you would like us to talk on the phone and I will try through the Stuart Strange Vasculitus Trust for us to get in touch. I felt so alone until I spoke to others and I have met 3 of them It really helps. I suppose I have been drawn to you as you are around the same age and a mum. My steroids have just been reduced to 7.5 and I'm a little tired but I'm on night shift tonight. I get pain in my back but I have a heafty 10 month old to carry. I blame everything else but Wegeners. Probably a denial thing. Much love Debbie
it would be great to get in contact with you, i have had a quick glimpse at the stuart strange trust will have another look and sign up. will look for you on there and hopefully we will be in contact soon.
Just been on the site cant see anywhere to sign up let me know how you want to get my details or i get yours. Are u on facebook? We can maybe do it that way. if u search for me i am under the manchester network and the picture is of me eating an ice cream in a restaurant. my name is lisa ****. i did a quick search for you but didnt see anything. hope to be in touch soon. also i am a member of a local forum if you want to do a search for that it is in little lever my name is lisa on that maybe you can send me a message that way.
hi debbie i have just private messaged you (pm) if you look in my space just under the green banner you should be able to get it, i think. i have put all my contact details on there.
Hi Lisa, I hope you are keeping well. Are you having the swine flu jab? I am well. I have just got rid of the cold. I about to start nightshift what a thought. Love Debbie
Hi Debbie, yes going to get Swine flu Jab and Flu jab but not feeling too well at moment gong to wait a couple of days and then going to get an appointment with the doctor hopefully, and look at getting the jabs next week. How r u I see u have been busy organising halloween parties and such glad u are feeling loads better by the sounds of it I am starting to get pain back in my shoulders again but not sure if its just aches and pains from the cough i have got its driving me mad and of course we cant take cough medicine so got a linctus today to try and soothe my throat. Its nice to hear form u I have spoken to Steve a couple of times which has been good. Hope u r looking forward to christmas as I am this year me with the added bonus of no pub to run and we all can enjoy christmas day as a family and hopefully I will make it thru the whole day and night without becoming too tired, I cant wait this time last year I didnt have a clue what was going to happen and I expect u was going thru the same thing, but we are still here to tell the tale and lifes not too bad is it. Take care, speak to you soon Lisa xx
Lisa. I had my swine flu jab on Monday night and the next day I felt like I had been run over. I had been feeling a bit off colour anyway as my kids have got the cold. I needed an antibiotic for my chest as I picked up an infection. I have been having lots of blooded crusting in my nose and my heels were sore. going downstairs was like before I was taken to hospital and going upstairs was on my hands and knees like before. I then panicked and wanted a blood test to check im OK. I had that I dont want to get out of bed feeling and desperate for bedtime. I havent felt like that for ages and it feared me. Today I feel normal again and less worried but I have to get another jab in 3 weeks. You will get a sore arm for a few days. Much love Debbie. ps Party was a riot
hope u feel better soon. i have been feeling really tired recently like i could sleep for a week, but put it down to doing too much, i hope u have slowed down a bit and are taking your time to get over it. i have stopped running around after kids all time but the problem is we feel loads better so think life is back to normal, but then we get a sudden reminder that it isnt but at least we get warnings and can slow down. I am going to go and get jabs next week. Need to pick up my prescription anyway. I still get really out of breath very easily do u ? Anyway its great to hear from u. Hope we both get better soon and survive the dreaded winter without too much infection.
Hi Lisa. To be honest I feel just like I did before WG. Sometimes I think am I really ill? Then I remember January! I have no fatigue no breathlessness. I have trouble getting WG out of my thoughts and I get emotional at times over the kids . It is coming up to a year for me and perhaps this time of year will be a bit tough. On the positive side I have met some great folk and noticed that everyone is willing to support eachother I certainly dont feel alone anymore. I never leave much until tomorrow and now I will do things that I want to do rather than want to do it and never carry it out. I do get miffed at the weight gain and my face is not slim like it was and I do wish I had the carefree days without thinking of ill health and ANCA. This year I am busy arranging Christmas and I am going to enjoy it. I will phone you sometime soon for a real chat. Im off to a posh do tomorrow through Stuarts work all paid. Food Drink and a bed for the night. Much Love Debbie xxxxxxxxx
Hi was at clinic on Friday for routine checkup and have been diagnosed with a relapse. My kidneys are back down to 15% again and they but me back on the cyclophostamide yesterday and upped my steroids back up to 60mg again. Was quite shocked because although i was feeling unwell over xmas and new year with cough and colds etc. was actually starting to feel better last week. The only good thing i can take from this at mo is at least i didnt feel anywhere as ill as what i felt in oct 2008.
Hi Lisa, How are you keeping now after your relapse? I am about to start my nightshifts so I may give you a call once I finish.
Back at hospital later today for blood tests will find out if they need to do another biopsy. I have to have 6 lots of cyclophostamide again over the next 6 months. My face has swollen up again and this time my ankles and feet have swollen up. Dont feel too bad but not great if u know what i mean. Oh well better get ready for school run. Speak to you soon x
Keep your chin up. Had a biopsy myself so I know what its like. Lets hope you dont need one. Thinking of you. Debs
Hi been in hospital for a week, my kidney function is at final stage now so had the kidney nurse at home to discuss dialysis and what type to have. Now kidney function at 11%, last lot of chemo didnt work had another lot last week but wont find out whether it has done anything for a couple of weeks. Just waiting to see surgeon now for fistula and then dialysis will begin. Not had best of week but it is just another adjustment to my daily lifestyle. Feeling a bit down about it at mo cos was doing so well and when they let me out of hospital my kidney function was stable at 15% and the doctor had said i will prob need a new kidney before i am 50 which i was just getting my head round and then when i went for chemo last tuesday (4 days after being discharged) they wouldnt give it me cos my function had gone down again to 11% and everything else was up. went back next day and they gave me chemo but said it might work will have to wait and see. Not feeling too good today i feel sick and just fed up with it all. This disease is so complex, my worry now is if they manage to get the wegeners back into remission and i get a new kidney (have to go on transplant list now) what will happen if i have another flare up. have asked but no answers at mo. I am at renal clininc on thurs this week to see consultant so will hopefully get a few more answers there. but my blood results wont be true because my body will be dampened down from the chemo last week, and my last lot of bloods after the first chemo were goodish, then 2 weeks later i was in hospital again for a week and my bloods were rubbish again. Oh well suppose will have to wait and see what happens.
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