Just been diagnosed with WG
Posted , 8 users are following.
Hi,
I was diagnosed with WG 3 days ago. After months of very painful joints, I finally got an appointment with a rhematologist who carried out loads of tests and has now told me I have WG, and my treatment will be taken over by the vasculitus team.
Suddenly so many symtoms I have been brushing off as nothing look like they play a part in this illness; constant tiredness, blocked ears, soar throats, runny/blocked nose, feeling like I constantly have a cold about to start.
The rhematologist painted a very positive picture. Saying there were lots of goods treatments now that could put me in to remission. That the hospital had a very good vasculitis team and I would be getting the best care. I like to think I'm a strong person and left thinking I can do whatever it takes to get well again.
Since then my rhematologist has said he is recommending a kidney biopsy because of the results of one of my tests. Maybe rather foolishly, I've been trying to find out more on the internet, but I am struggling to find anything positive about this disease. In fact quite the opposite, and the positive strong attitude I thought I had on Thursday is starting to get eroded.
I've stumbled accross this site now and read some of your comments. So I've decided to get some of what's going on in my head out and down in writing as well. I'm not sure what I'm trying to achieve. Maybe it makes me think \"well at least I'm doing something\". Maybe I'm hoping someone will respond and tell me that I can still look at it positively. I guess I have to.
I live alone and work full time doing what is usually a very stressful job. I haven't told anyone about this yet. I'm scared about the future and worried about wheather or not I have what is needed to get me through this. I'm hoping this is just me feeling sorry for myself, and I'll be able to give myself the kick up the backside I need to fight it and keep my life normal.
I apologise for my ramblings, but any comments, words of wisdom or even that kick up the backside would be gratefully received.
My best wishes to you all, Rebekha
0 likes, 37 replies
TWATSON
Posted
Hope you are well. thank you for noticing i had not been on nothing to worry about thankfully just my daughter was unwell with her asthma so didnt get much timet o myself. Since we spoke i have had a check up with my consultant who confirmed that I am in \"clinical remission\" both symptomatically and biochemically (bloods) which is great Im now down to 5mgs Prednisolone with 2gs Cellcept so we are exactly the same now.
I see you have a check up on WEdnesday and I so so hope you are close to remission you have been through so much it would great news for you to be told that. Anyway you appear to be jogging a long nicely and keeing us well advised so keep it up lol.
Regrds,
Tracey - Let me know how you go on Wednesday. x
Rebekha
Posted
Glad to hear you're ok and in remission. That's brilliant news. I hope your daughter feels better soon as well.
I've ended up on Cellcept by random chance really. I signed up for a research programme. The hospital is researching patients on Cellcept and Cyclophosphamide. Usually the med given would be the Cyclo, but if you go on the programme, the computer randomly decides which one you go on. The hospital then monitors everyone's progress. I think the hope is that eventually instead of automatically giving everyone the more toxic Cyclo, they can give the cellcept instead, which has to be a good thing if it works. I was relieved to get the Cellcept if I'm honest. I wasn't keen on the alternative. I'm on the programme for 18 months and I have to give extra bloods, but that all gets done at my usual visit anyway, so there's no additional effort required from me really. As long as it's working, they'll keep me on it, but if it doesn't, they'll put me on the Cyclo. Fingers crossed.
Mo,
I hope all goes well on Wednesday and you get good news. You certainly deserve a break. Let us know how you get on.
Bye for now, and take care, Rebekha x
TWATSON
Posted
Tracey
Mo_Grant
Posted
Just back from the hospital and I asked the consultant if she thought I was in remission. She said that I was going towards it, but my antibody count is still too high but is gradually reducing. When I was critically ill, my anti-body count was off the radar, so to speak but I have been having treatment now for about 16 months and the consultants would like to get the anti-body count in negative territory. It was off the graph when I first started the correct treatment and it came down rapidly at first, but its now hovering just above the zero line, but stubbornly refuses to go below it! To get into negative territory and full remission may take some time, so I am afraid I will be on the same medication for the forseeable future. Oh well! At least I'm alive and sort of enjoying being still around.
Tracey, I hope your daughter is well again, after her bout of asthma and that you are feeling OK.
Rebekha, THank you for asking how I got on today. Hope you are feeling better now about Wegener's. When are you departing for Oz?
Kind regards to you both - Mo x
TWATSON
Posted
Glad to hear your well ! considering just how severe your WG was i guess it may take sometime to get the antibody to zero but your perserverance and good spirit will pay off I guess I got to remission quickly as the disease seems to be limited at present to my sinuses and upper respiatory tract. the main thing is you are going in the right direction and feel good that accounts for alot.
I think Rebekah has got a hold on this and appears to have a good attitude which is great. Her time in Oz will be great for her.
Take care and chin up.
Luv,
Tracey
Mo_Grant
Posted
Debbie_Ley
Posted
Did you start up your dancing again??????
Much Love Debbie