Mother with WG

[dpatrickwg]

Hello all,

My mother was recently diagnosed with WG. Went in because she had a few little dots of blood when coughing and a Kidney specialist happened to find the WG before anything serious started to sprout up. Was curious as to if most patents find themselves going into remission within months of treatment.

[drz]

Most do with proper treatment.

[mishb]

Hi dpatrickwg - welcome to the forum.

I'm glad you found this site for your mum and I'm very happy that the doctors found WG so quickly.

Medicated remission can happy very quickly, as drz said, with the proper treatment.

What medications do they have her on and what is the prognosis for her kidneys?

[dpatrickwg]

Thanks for the responses. I can't quite remember I do know they are two common drugs used for wegeners one a chemo and another started with a P. Believe by the grace of god the doctor managed to find it as quickly as she did since most cases go on for quite awhile before its caught. I remember the kidney specialist said that her kidney had a mild inflammation and went from 1.6 to 2.3 but stayed at a 2.3 for a few days. She seen about 12 cases herself so knew right away what was going on. None of my family or friends have heard of the disease which is a shame as even though its a rare condition, getting word out about it is crucial just because its hard to pin point what's going on.

[mishb]

What Country, State are you from.
It's so lucky for your mum to have been seen by a doctor who had already seen other cases before

[Barry Forshaw]

The drug starting with P is probably Prednisone (prednisolone) which is a steroid. It would typically be given in quite high doses to start with and then be reduced over time as you go into remission. Up to 90% of Wegener's sufferer's go into remission but over 50% of them will have a relapse within a couple of years.

A doctor who has seen 12 cases before must be something of a record. In that regard your mother is very fortunate! Please let us know how things go.

[dpatrickwg]

Thanks for replies, we were very fortunate to have caught it so early . I truly believe it was the grace of God that a kidney specialist was there the day my mother went into the hospital and was able to catch WG very early. Our prayers is that not only my mother receive a speedy recovery into a remission with no relapses but our prayers and thoughts go out to all those who catch WG as well.

[annekat]

Welcome to the forum, dpatrickwg. You and your mother are indeed fortunate that it was caught early and that you have experienced docs on her team. Everyone is different, but it sounds good for your mother, and she should show great improvement over the next few months and go into what would be called a medicated remission. This would mean the symptoms are greatly reduced or eliminated, but drugs would be maintaining her in that state. She may be moved to a milder drug than the one she started on, and as Barry stated above, the prednisone will be tapered over time. It can be difficult for many to get off the pred altogether because the body has become dependent on it due to the adrenals having shut down over time of long term use of the drug. But with gradual enough tapering, the adrenals can be coaxed to come back on board and resume their function. Some people on here have gotten into a drug-free remission in not a lot of time, but it is more common for us to need the meds for at least a period of years, to prevent relapses.

You have found the very place for info and support for anyone with WG. I hope you will keep us informed on your mother's progress.