Hello

[purr6]

Hi Jan,
My Wegeners was diagnosed after a trip to ER coughing up blood. I also had the numb foot at that time, skin lesions, sinus issues for 9 weeks prior to that, fever, weight loss, dehydration, slight kidney involvement and severe joint pain. The Anca result was what they really went on for the diagnosis, but a skin biopsy was taken as well. I DID start treatment prior to the skin biopsy results coming back, but I am unsure as to why that was the case.

The foot pain is something that none of the doctors really can give me any definite answer about. I am going to physio twice per week and things have improved, but not to the point of feeling "normal" again (if that is even possible). Initially, shower water on my foot was excruciating, but now that has improved. I DO believe that the foot issue is a Wegeners thing definitely. I am sorry to hear that you have had so many other issues as well. Do you feel that your foot has improved at all? I am taking Gabapentin for pain. Are you able to take something for the pain to help? I am in the process of hopefully switching to mtx from the ctx at my request to my rheumatologist.

Stay positive and thanks so very much for sharing your story! I appreciate it sooooo much!

[purr6]

Hi Jolanta,

Thank you for your response! Do you happen to know the name of the doctor doing WG research in Ontario?
Sorry to hear about your foot pain and numbness. I know how difficult it is. Wow, Three years is a long time to live with that numbness. It is such an odd feeling. It has been 4 months for me and sometimes it is easy to get discouraged.

I hope that other than the foot pain, you are feeling well!

Take care and thanks for sharing your story with me!

[purr6]

Hi Doug,
I know the feeling of walking on bruises--or I guess I have sometimes thought of it as walking on pins and needles. Were you taking anything to help with the pain associated with it? I know how uncomfortable it can be. I am glad to hear that you have had some improvement and I hope that continues for you!

[Sangye]

Purr6--I suggest calling and/or emailing the VF to ask for their help. The Ontario doc is at Mt Sinai. I think the study (and contact person) is listed on the VF website. VF folks are very good at guiding Weggies from all over the world.

I imagine they started your treatment before waiting on the biopsy result because you had alveoloar hemorrhage. That can be deadly very quickly, so there's no time to lose waiting for results.

[jola57]

purr6 her name is Dr. Katherine Siminovitch.

[purr6]

Thank you Sangye. I appreciate you sharing your knowledge on this. I will check out the VF for the doctor at Mt. Sinai. It was good to know about the alveolar hemorrhage as well as the urgency of things was never relayed to me. Now I will know to act accordingly (considering it can be deadly quite quickly) if I have a recurrence. I think that is one of the most challenging aspects of all of this--not knowing what to look for in a recurrence.

Thanks again!

[purr6]

Thank you Jolanta,

I will check into contacting her!

[Sangye]

Purr, last summer I knew I was flaring but my docs weren't sure. I was going downhill for several months. One morning I was much worse and I paged my Wegs doc to ask if I should go to the ER. While I was waiting for him to call I coughed up some blood. When he called I told him about it and he said to get to the nearest ER immediately--preferably by ambulance. You can go from coughing up blood to massive pulmonary hemorrhage instantly. My local hospitals are horrible and I'm too far to take an ambulance to JHU. I told him I'd have a friend drive me to JHU as fast as possible. He was really upset-- I live 1.5 hrs away. I knew the risk but took it anyway. My local hospital are that bad!

He said coughing up blood is ALWAYS a trip to the ER. So now you know at least one thing to look for!

[pberggren1]

My local hospital is bad too. I wish I lived in Saskatoon where my Rheumy is.

[purr6]

Thanks so much for the info. I am sorry to hear that you have had such a terrible time with things. I agree that it is soooo difficult to be treated properly when no one really knows much about this disease. As a result, sometimes we are at the mercy of the health care professionals. I have tried to make it my mission to find out as much is possible myself about this disease so I can at least know what is happening to me.

My hopes are that you will not have to have any more trips to ER, Sangye!