WG Newbie Question

Wegener's Granulomatosis
#1

Hi All,

I am glad there is a group to post to, and hopefully one of you may be
able to offer some advice. Best wishes to you all and many thanks in
advance.
I have read as much as I can digest about WG which my father has
recently been diagnosed with. He is on a course of Chemotherapy and
steriods. My main question is that he seems to be getting gradually
worse with new symptoms appearing (ie. stiffness on one side,
irritability). When he first presented to hospital he did not have
these symptoms (just a cough and shortness of breath), but now a month
later he does. Is this common - does he need to get worse in order to
get better, or should we be seeing a gradual improvment as opposed to
deteriotation?

Many thanks for all/any help!

Kind regards,

Matt

#2

I’m sure your father is still dealing with the shock of his diagnosis. The chemo and steroids are enough to make anyone irritable. Just tell your father, they won’t last forever. It took a year for me, but the doctor tapered me off. A few months after then, I began to feel almost normal again. My physical condition has deteriorated, but I can pretty much do whatever I want. Encourage your father to faithfully take his medication and when he feels tired, rest. Wegener’s is a life altering major event, but it’s not the end.

#3

Hi Matt. First let me say that I’m so sorry to hear about your father’s diagnosis. I’ve been living with WG for over a year now and am currently doing VERY well. I pray for a speedy recovery for your father too.

In answer to your questions, I’m not sure about the stiffness you’re talking about. I can say that not all symptoms resolve/improve immediately. I had a really hard time walking any distance whatsoever for a while b/c my legs would cramp so badly. It did get better. In reference to the irritability, it is almost definitely the steroids that are doing that. Unfortunately, that’s one of the side effects. Mood swings, irritability, night sweats, insomnia…etc. are all common side effects of Prednisone. They do get better as dosages are tapered.

Please feel free to ask any questions you may have. I think it’s very important for family to be aware as well as the patient.

#4

Matty,
Your concerns for your father and seeking knowledge on his behalf is touching. The steroids are very mood altering including confusion, irritibility, and in my case unable to stop some very snappy and uncalled for comments before they left my mouth. At times I felt “out of body” when I was on higher doses of Pred. One remedy that seemed to help was .05mg of Xanax as it took the edge off. Pred sometimes feels like you have drank a gallon of espresso.

There are many support sites that may be helpful to both you and your father. I found a really great one through doing a search with Wegeners in the search box, in Yahoo Groups.

This disease has as much of an effect on the caregivers/loved one’s diagnosed. Be sure to keep yourself well, educate yourself and those around your father as to the realities and his progress to treatment.

Bless you for caring for someone so much.

Lisa
dx June 2007