Ah I see, thanks for the info, JeanMarie. I am on immunosuppression for renal tx and have been a long time. I notice here that some are fully taken off the immunosuppression when wegeners is in...
Type: Posts; User: kmac14
Ah I see, thanks for the info, JeanMarie. I am on immunosuppression for renal tx and have been a long time. I notice here that some are fully taken off the immunosuppression when wegeners is in...
Hi, I have been reading a lot of posts which mention Ritixumab. This is a drug that I have not come across before and it seems that it is somehow related to lung and stenosis issues in particular? I...
Don't have a saddle nose but very big hole in septum. Docs often use the term 'ooh it's definitely abnormal' when they have a look in ears or nose. I always think to myself 'aims to please!' They...
Hi Gilders, hope things are OK today with you and that Norovirus has shifted. I am a UK Wegeners and I noticed that they did mention. Dr. Jayne earlier in this thread. He is the uk and really a world...
I didn't get the saddle nose and that has been a very long time. They diagnosed by taking a huge chunk out of my nose (horrible and very painful memory) and I do have a damaged septum inside my nose....
Hi Velma, just been reading this and you are similar to me with the length of time living with wg and the lung/scarring/stenoses issue. I had the lazer burning too but when I moved home, they cut off...
Exactly! The renal team are so fantastic and a brilliant support. They have a modern outlook and they involve me in everything. The pulmonary just add worry and fear to me with the absence of...
Will look into these stents, thanks.
Hi Mrtmeo (again:), my stenoses are small and many. Certain lobes have gone but it has been over a very long period of time (decades) and so the working lobes have kind of overcompensated and got...
Long term, I think that cyclophosphamide damaged my lungs far more that they had been. I agree that prednisolone long term does do damage. I have been on low maintenance dose of pred 5mg forever and...
Same here. Migratory pains. I was a teenager and they just didn't take it seriously when I said that the pain would flit from shoulder to elbow to each joint on the finger to my hip to knee etc. at...
In my experience, the ear 'infection' was one of the first things that I presented with. It was wegeners. Lots of fluid build up behind the drum. I wear two hearing aids and have no problem with...
I have stenoses and this wheeze sound on exhale is very distinctive - they listen for it and it is the stenosis issues. My lungs are very stenosed. At one point, I was having lazer treatment to...
Hi mrmteo, thank you. I am not sure how much I can offer because I am UK so a very different system, drugs, etc it seems on reading some threads. But I am happy to share what I have experienced. I...
I have never had to wear deodorant and have the hard ear wax. People who do have the gene variant generally don't even really know it because it is the societal norm to spray deodorant so they do....
Don't know if this helps but I was on cyclophosphamide for a good few years - back then in 1987, they were far too over zealous with the immunosuppression and it was not as sophisticated as it is...
Ah well. Thought I'd ask. It could have been something quite common in wegeners.
It has been something which I have often wondered. There is a gene variant called ABCC11 and about 2% of people have it. Well I have it and it means basically that you don't get body odour and don't...
Hi Donna, lovely to hear from you. Yes I think that it has made my life something different from what I would have been. I feel very strongly that I did what I wanted to do and did not let anyone...
I had a second tx around 2 years ago which is doing great so all really good at the moment. During decline I did have difficulties with managing BP and oedema. Decline was not due to active wegeners...
Thanks Rose, I will do and I will read your story. Great talking to you tonight.
I have had two kidney Tx's and with the first one, function slowly declined over three years. Everyone is different but it is possible to stay for a long time with a GFR which is quite low. E.g 15 -...
Is it possible to change username once registered?
RGU is a great uni, Rose and Aberdeen is a great city for student life. What is your daughter studying? Could I ask your story? Sorry not sure of the ways of the forum yet.
Hi Michelle, thankyou....
Thanks so much Rose. I am from Ayrshire and reading Lauren's story is so close to home for me. I don't really know how I actually did live back when I first developed the wg. It was months and months...