How Long Before You Began To Improve?

**Grandma2Katie** · 03-23-2009, 01:34 PM

Hello Everyone. I'm Katie's grandma. She was just diagnosed with WG this past Wednesday. She is declining at an alarming rate and treatment hasn't begun at this point. She is seeing a pediatric oncologist/hematologist tomorrow. I am hoping he will admit her to the hospital immediately.

Once you began treatment with chemo and prednisone, how long did it take for you to begin to feel a little better? Any encouragement will be appreciated for we are all very frightened by her decline.

Cindy

**germaine** · 03-23-2009, 02:50 PM

Hi Cindy,
I clearly remember taking the medication at 9 pm and within about an hour some of the pain was gone, and my nose felt clearer, the first relief in what felt like a long time. That was the prednosone. I was amazed. I improved rapidly for about a week, then gradually after that. When she starts to feel much better, be sure she rests enough so she will keep feeling better. The prednosone gives you false energy and makes it hard to sleep. At least thats what happened to me. As a grandmother, I feel deeply sad about her health, but want to say that with information and all the new medication, there is much hope I think. I will add my prayers for Katie.

**Sangye** · 03-23-2009, 03:53 PM

I was started on IV prednisone (1,000 mg), which is as high as it gets. I was in severe pain all over for months, and within about 3 hours of the IV, the pain was gone. I didn't start the chemo for almost 2 weeks. But I was on such high pred, I was doing well (not counting the side effects, which were horrendous).

**Grandma2Katie** · 03-23-2009, 04:01 PM

Sangye, what were the side effects from the pred? I've taken it myself for arthritis in my spine but that was only for a brief period. I know about the weight gain. What else does it do long term?

Cindy

**Jack** · 03-23-2009, 07:58 PM

Originally Posted by Grandma2Katie

What else does it do long term?

Long term, the effects can be bad, but the alternative is worse. However, there are so many different treatment regimes that long term steroids may not come into it. I've had plenty of bad experience with Prednisolone ( see - http://www.wegeners-granulomatosis.c....html#post1353 ), but I keep taking it!

**andrew** · 03-23-2009, 08:19 PM

Hey Cindy...
If she's declining rapidly then she really should be taken to emergency and a course of treatment started immediately. This thing can get worse really quickly and it sounds like it has gone past waiting for the docs.

As far as feeling better is concerned. I was in a coma for the first couiple of weeks and then in ICU for four more so I really didn't start feeling 'better' until after I was moved from ICU. Wtihin 5 months of diagnosis I was back at work though.

**Grandma2Katie** · 03-23-2009, 04:05 PM

Originally Posted by germaine

Hi Cindy,
I clearly remember taking the medication at 9 pm and within about an hour some of the pain was gone, and my nose felt clearer, the first relief in what felt like a long time. That was the prednosone. I was amazed. I improved rapidly for about a week, then gradually after that. When she starts to feel much better, be sure she rests enough so she will keep feeling better. The prednosone gives you false energy and makes it hard to sleep. At least thats what happened to me. As a grandmother, I feel deeply sad about her health, but want to say that with information and all the new medication, there is much hope I think. I will add my prayers for Katie.

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Germaine, thanks so much for the prayers and encouraging words. I will pass the info on to Laura about not over doing once Katie starts improving. God willing, that will be soon.

Cindy

**jola57** · 03-23-2009, 06:04 PM

My prayers are with Katie and all of you. Please let Laura know to talk tot he doctors. If Katie is feeling so bad, they must start her on prednisone . Your Daughter must talk to a rheumatologist as well as the oncologist. The biopsy should confirm Wegeners and treatment would start right away. good luck, I will think and pray for Katie all thru the day. I have two boys 21 and 24, and with just a flu one is having my hart is heavy. Warmst hugs to you.

**Carol** · 04-03-2009, 12:10 PM

Hello Cindy
Within a few hours the pain had gone for me but it has been a long road to getting well. With Katie being so young it will be hard for everyone to understand the adjustments YOU will have to make. Katie will probably only do what she is able to do and you will all have to go along with that. It is so important to understand that there will most likey be a long period of convalescing. I had never used that word before I had WG but it is a very useful word(perhaps old fashioned) as people see it then as a longer term thing. I think it is also a positive word as it implies that there is an improvement in heath. Make sure that Katie understands the value of rest. I had 4 places I slept in the house. I never slept in my bed during the day only at night. I have a white bedroom which had sun on the bed in the mornings so I slept in the sun. I meditated in a corner with a couch with woollen covers and a woolen blanket, a feather pillow and a wood heater beside me.Very comforting. Then I had the couch where I watched TV and had visitors. It was nice to have this variety. Perhaps this is useful to you and others.

**coffeelover** · 04-04-2009, 02:36 AM

Carol,

I like your idea of different rest places in the house. I did that with two seperate rest areas after my trach surgery and used one for days and the bedroom for nights.
Another thing I started after surgery and diagnosis to rest, but keep my mind in motion is I started guitar lessons. I am a musician and my "first" job was as a band teacher, so I have played numerous wind and keyboard instruments, but never a stringed instrument. I am enjoying this relaxing form of learning and I am slowly getting better just like with the WG.
So I am suggesting possible alternate activities to keep the mind busy and find that feeling of accomplishment and control that you do not always feel as a weggie survivor.
LIsa