New to forums and talking about my life with wegeners/gpa !

Hi everyone , I'm Dave and a wegeners or gpa diagnosed patient of many years and I'm 42 years old, I've flicked through nearest of you and am wondering if anyone out there has been diagnosed POST 15 years. Just my curiosity getting at me as I know first hand how rough and stressful things can be . Wishing you all the best with the fight

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  • Hi Dave. I was diagnosed with Wegeners back in 2003. I'm now 41 and have struggled over the past 2 years. My main issues are breathing as it affects my upper respiratory system. My subglotic airway is unfortunately restricted and I'm on my second year of cyclophosphamide treatment which unfortunately has made very little difference to my breathing. I'm hoping to get the disease under control once again (I went 11 years in general good health with only a few flair ups) and hopefully then something can be done to improve my breathing. It's very frustrating as I've always been active, but over the past few years even climbing the stairs makes me breathless. I'm a very optimistic person so when things don't work out I always know there is something else to try.

    Best wishes and keep fighting

    Lee Porter

  • Lee, have they tried Rituximab? Do you mean that you have been taking Cyclophosamide for 2 years?

  • I had one infusion of rituximab but they have stuck with cyclophosphamide. I had six infusions last year and I've had 4 infusions this year. 2 more to go before the end of rather year.

    Unfortunately it doesn't seem to have improved my breathing.

  • Hi Lee,

    The NICE guidelines for Rituximab are very clear, it can be used if Cyclophosamide has failed to control symptoms, one infusion of Rituximab isn't going to do anything!

    nice.org.uk/Guidance/ta308

    Where are you seen, it sounds like you may need a second opinion or at least question your current Consultant about your treatment plan. Research shows that Rituximab is usually very effective when Cyclo fails.

  • I'm in Yorkshire. Cyclo has worked in the past to stabilise things but has done very little to help my breathing over the past 2 years. It would be interesting to know what treatment plan other Patients have followed whose symptoms are mainly upper respiratory.

  • Hello Leeboyp, my boyfriend 54yrs old was diagnose 4 years ago; his main struggle is breathing and fatigue now a whole on his palate that make it difficult to eat; he is starting a new treatment here in San Diego; 4 sessions of Rituximab since cyclo did not work for him..hang in there everything will be OK!!!

  • Hi there

    In 2003 when I was first diagnosed my palate perforated as well as my septum. The hole in my mouth healed very much after starting cyclophosphamide but I have a plastic piece in my nose.

    I also had a few largemouth ulcers and a lump on the side of my neck (glands) which slowly started to heal. Hope Rituximab starts working soon. Take care.

  • Hello Lee, I am happy (if I may ) to find someone else with the same issue as my boyfriend Robert. His palate is perforated in two different places becoming a big one, he is going now on his 3 infusion of rituxin, to tell you the true he looks and started to feel much better!!! they tried cyclo but was not doing the job. it is amazing now that the inflammation is going down i can see the difference on his nose..is about to collapse since according to the doctor there is nothing to hold it. later on they planing to do reconstructive surgery but wondering how the palate can be fixed??? can you give us some input. thank you for telling us about you. I appreciated...see..your making my life much easier....xoxoxox

  • Hi, hopefully Robert will start to pick up quite quickly. I was amazed how things changed for me in a positive way. I was in a very bad way as it took so long to diagnose. Once I started treatment all ulcers, perforations and swollen glands etc started to be less painful almost instantly and although it may take time, my body started to heal as it would do with a fully fit patient. Most things fixed themselves. My palette somehow repaired itself, although I did have a plastic septum button installed which has been present since about 2004. Touch wood I've had no issues with my pallete or septum since, although my gums have receded quite a lot but are still healthy.

    I do still get the odd infection in my nasal passage which is generally treated with antibiotics.

    Although Wegeners (GPA) is a terrible disease there is lots of hope and lots of treatment Unfortunately everybody is different, but once they get you on the right course of treatment things will definitely improve.

    If something doesn't work, don't lose faith as there is always another option or plan B.

    I may even be famous in some medical journals as my situation was so bad at the time, they took me to a specialist until at Leeds GI to photograph inside my mouth and nasal passage. Not very pleasant. Haha.

    Keep me updated. Things will improve. X

  • yes, you should see the big eyes doctors make every time they open Roberts mouth..is not funny, but is so funny!!!! I will keep you all updated. thank you for all your guys support!!

  • Hi Lee I'm glad you look at the bright side to its the only way I've kept going. I've had this 26 years now an although tried on many occasions to finish me I have not let it spoil anything to much. I have had a good working life although suffered much pain and discomforts over the years but also spent time working in jobs I have loved.at the moment I'm not working due to lets call them medical issues for now mate lol.

    Hope u stay as well as possible mate be lucky

  • Best Wishes Dave.

    Keep fighting.

  • Hi Dave, I was diagnosed in 2001 at the age of 42. In the last year I've been treated with rituximab and it has made a huge improvement to my general health. Whereabouts do you live as there are quite a few support groups now if you are looking to meet others ...

  • yea ive had wg 23yrs now and doing ok, had a flare up few wk ago but steroids put t right again.

  • Hi thanks for your reply it's good to see others who have managed a good length of time and are coping ok.I was diagnosed in 1992 and haven't had the best medical care but have survived some very rough times and enjoyed some good times as well. Ok have also never spoken to or met anyone else with wegeners in all these years!

  • I was diagnosed in 1989 when I was 19. I am 46 now. It attacked my kidneys and I was on dialysis for 13 years until I had a transplant. I endured many years of cyclophosphamide as the was nothing else. More recently had Rituximab which was good. beginning to flare up again in my sinuses.

    All the best

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