Lurker out of the Closet

[Girly3800]

Good Morning All –

I’ve been lurking around for a bit. Haven’t necessarily had anything to contribute but I have been collecting your wisdom and much appreciate it.

My husband was diagnosed with Wegeners this year. His case is a little atypical and that is all to his good. He had a quick onset of symptoms and was diagnosed relatively quickly – within about the 6-8 week time frame. Those weeks weren’t easy but once diagnosis was made treatment was started and he has been making progress – some of it dramatic, some of it baby steps. His symptoms leant towards the vasculitis side with nasty lesions on his extremities, neuropathy in both feet – right is worse, migrating arthritis, and minimal kidney involvement. There was also a huge soft pallet lesion but no other sinus involvement. His hearing was affected.

He had four Cytoxan infusion treatments four weeks apart and of course the usual prednisone. He started at 60 mg a day and is at 20 now, scheduled for 15 September 1. He starts on methotrexate this week. All but the deepest lesions on his legs are completely healed and had only had new ones when the prednisone was reduced a little prematurely in June. Upped it for a couple of weeks and now all seems to be well. Kidney function has improved and we’re trying to work on the neuropathy now. Hearing has gotten better.
Usual fatigue and the sun really knocks him out.

And then – we just returned from a six night stay in the hospital. He has developed pancreatitis – also quick onset. He had a 9 x 30 cm pseudocyst rupture. There are no baseline CT scans or MRIs so unsure of when this all started but the best guess in within the last two months. Unbeknownst to us. Some of the possible symptoms during those few weeks were attributed to the Wegeners treatment. The doctors are confident that the pancreatitis is not a manifestation of the Wegeners but open to the possibility that treatment caused it – or at least contributed. Given the treatment this past week and the necessary disturbance of his other (Wegeners) treatment we are hoping he doesn’t have a flare – there is always that possibility though.

So, now we are going up another steep learning curve – this time on pancreatitis. Has anyone on this forum had this development?

Aldena

[mishb]

Welcome to the forum, Aldena........I'm so glad you have come out of the darkness to say hello.

I don't know much about pancreatitis apart from it being a gland behind that stomach that can get inflammed.......reasons as to why or how......I don't know, infection I guess. Maybe it is a result of the medication......I'm sure there are a number of people on here that will have the answer for you.

Just wanted to welcome you and let you know that you are not alone and by now you would have seen that we have many carers on this forum as well.

I hope things start to get under control for your husband and maybe one day, he may even pop in to say hello

Take care

[Sangye]

Hi Aldena, welcome. I'm glad your husband was diagnosed so quickly before Wegs did more damage. I don't think there is a typical Wegs presentation. I thought mine was atypical, but have learned over time that it's not! LOL

I haven't heard of Wegs causing pancreatitis, but Wegs can involve any part of the body, including the pancreas. Good that he was properly diagnosed and treated.

[Lightwarrior]

Aldena, I'm so glad that you came out of the closet. I agree with Sangye, I haven't heard of pancreatitis but it is possible as your husband is proving. I hope they are giving him lots of fluid and pain medication while he is in the hospital. Meanwhile, how are you taking care of you? I am glad that you found us.

[jola57]

Hi Aldena and welcome. I am glad that the meds are working for your husband. Pancreatitis is possible from both, the meds and wegs so hard to say which caused it. As long as they are on top of it and he gets better I guess its now a moot point. Hope he gets better soon.