New to group looking for info

[Wheels]

Hi new here my husband was diagonised dec 6 2012.
I have reading post here since then. He sounds like most. No kidneys problem. Sinus airways and lungs and joints. Has been really good since April This week steadily getting weaker and tightness in head and pains in upper stomached took him to emerg this morning. And they are telling they think it is a ulcer. Has anyone had the same problem????

[pberggren1]

Does he have a specialist looking after his case? How close are you to Toronto? Having a top doc is so key with Wegs I just can't stress that enough.

[Wheels]

Yes he does have a top doc in Thunder Bay we are 12 hours from Toronto stomached problem is new

[pberggren1]

What does the doc think?

[Wheels]

The doc we seen today is a GP. She thinks ulcer. We main doc on Friday. He has a fever now for two days and headache for 4 days. He takes 15 mg prednisone. mtx 250 mg

[Dirty Don]

Welcome...if your quoted mtx dose is correct, that is waaaaay too much...could be reason for stomach.

[Wheels]

Thanks his doc weight him and gave him that dose 3 in morning and 2 in evening. Azathioprine is the same as mtx?? He also takes sulfatrim 3 times a week. He is 15 ml prednisone tapers 2.5 ml every 28 days. He started at 60ml. He is not feeling good at all. By the way my name is Debbie and my husband is Garry . We live in northwestern Ontario

[Alysia]

Hi Debbie,
welcome to the forum. I believe you can find here info and support from the kind and amazing friends here.
considering your husband's stomach pains:
when he was on big doses of pred, did he take omperazole or losec to protect the stomach ?
I have also colon involvement, although it is rare in WG. check with expert gastro doc this option. it is terrible stomach pains. I did calprotectin test which showed colitis, other then the known ones.
one more option: since the immune system is fragile, I can't eat foods which are not "clean".... germs in food cause me food poisoning. I can be "restaurants critic" telling how clean is the kitchen...

[mishb]

Hi Debbie - (wheels is a cool name) - welcome to the best place to ask questions.

The first thing I thought of was - oh my, I hope he has been taking an acid/reflux tablet to protect his stomach from the high does of pred.
- good pick up Alysia.
(maybe to 2.5mg taper every month is too fast/much for him)

MTX is not the same as Aza - the highest dose for MTX, I think, is 25 mg. I don't think it would be possible to take 250mg of MTX because you would be popping pills all day.
250mg of Azathioprine is more like it and, as far as I know (just from reading on here), that dose is correct.

Alysia, you are so correct about the restaurants and food.....combined, you and I would be feared if we were restaurant critics.

Debbie, I have Garry is feeling better in the next few days, and they can get to the cause of this.

[annekat]

Welcome to the forum, Debbie, and I wish the best for Garry. Others have answered your questions better than I could have, but I will say that his case sounds very much like mine, with the sinus, lung, and joint involvement, and no kidneys. Because of the lung involvement I was put on Cytoxan (CTX), a stronger drug than MTX or AZA and wonder if Garry should also be on something stronger. Another stronger one that is becoming preferred is Rituxin (RTX). But then I don't know the extent of his lung issues, and I know you have other concerns at the moment with the stomach issues, etc. I also had a tightness in the head, especially around the eyes, which no docs had much to say about at the time. That is all gone now, I'm now on MTX, and doing a lot better. Garry will improve with proper treatment and start to feel like his old self again.

Hang in there and keep visiting the forum. Share and ask whatever you want, browse and search the archives, check the Weggie Map at top of page, get to know us, we are here for you and each other. I would be lost without this forum.