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Grandma2Katie
03-23-2009, 12:34 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, 01:50 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, 02:53 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, 03:01 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

Grandma2Katie
03-23-2009, 03:05 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.
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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, 05:04 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.

Jack
03-23-2009, 06:58 PM
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.com/forum/medication/22-prednisone-5.html#post1353 ), but I keep taking it!

andrew
03-23-2009, 07:19 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
03-24-2009, 12:51 PM
She is now on the right track. She is in ICU at Baptist Hospital in Winston Salem. Prednisone and Cytoxan were started today. I will see her tomorrow along with her parents. Andrew, you gave me hope saying you were back at work after being so very ill. I pray for the same type of results for Katie. Thank you for the encouragement.

Cindy

Sangye
03-24-2009, 01:39 PM
When you see Katie tomorrow, give her a big hug from a bunch of perfect strangers, would ya?

And hey now-- one thing at a time. She has to get better first. Then we can talk about her going back to work.... :D

Doug
03-27-2009, 03:47 PM
The number of Prednisone side effects mentioned on this site includes some I didn't experience. Out of curiosity, I Googled "Prednisone side effects" to see just how many side effects I could find. I sorted them alphabetically for ease of checking out how many you remember having or currently have. Mine are italicized. The one in red is troubling, and Cindy should make sure Katie's parents are aware that growth in children can be affected by long term use of Prednisone! I don't think this is the whole list, at that.


acne/ allergic reactions/ blood in stool/ bulging eyes/ cataracts/ coughing up blood/ dangerously high blood pressure/ dizziness/ extreme aggression/ fatty deposit on back of neck/ glaucoma/ headaches/ high blood sugar-diabetes/ increased sweating/ infections/ insomnia/ irritability/
low potassium/ mood changes/ "moon face"/ muscle loss/ osteoporosis/ pancreatitis/ psychotic reactions/ ruptured tendons/ severe depression/ severe fluid retention/ stomach irritation/ stretch marks, abdomen & stomach/ stunted growth in children/ thin skin/ vision problems/ weight gain (rapid)/ wounds healing slowly

Grandma2Katie
03-28-2009, 10:39 AM
While the side effects are alarming, is there any other treatment available?

Cindy

andrew
03-28-2009, 11:58 AM
Pred is basically THE treatment. Pred is a bitter-sweet pill to swallow (sorry - warped humour). The side-effects can be a pain but the fact that it can mean the difference between life and death is a big pay-off. I'm pretty sure though that the stunted growth will only occur after long-term use/high dosasges. Plus, Katie is 'lucky' in that she's contracted this disease before her teen growth spurt so, in my totally complete-lack-of-medical-training opinion, if she's n a low/no dose in a few years or so then effects might be minimal/non-existent. Dr Sangye?? Thoughts?

Doug
03-28-2009, 12:54 PM
Cindy-

Andrew doubtless is on the right track on the growth spurt business.

As for the business of feeling better, you need to understand "malaise", or the overall sense of being unwell. Most of us are well people who sometimes are sick. A person with malaise feels sick and despairs of feeling well. It isn't symantics: as a Weggie, you kind of slip into malaise, but the moment you pass into wellness, or recognize you are returning to wellness, you feel a deep joy and relief, let me tell you!

The first treatment of plasmapheresis brought me into that recognition that I was returning to wellness. I described it in an earlier entry: after blowing clotted blood into tissues all day for months, I blew my nose and there was nothing but lightly blood-stained mucus, wonderful mucus! And I didn't have to blow my nose again for a whole day!

The second treatment, and I felt well enough to go home. Weak, but I started to feel like I was on the mend, the malaise lifted.

Katie's experience may well be different. I had severe renal involvement that continued to be a problem for months after. Controlled, but a problem. The healing took over a year. If they plan six plasmapheresis treatments for Katie, that's four more than I can speak to.

If you look over your entries and our comments, Cindy, you will see a remarkable narrative, a real-time account of Katie's experience as a Weggie. Most of the other accounts, mine, are remembered accounts. In my case, I'm going back five years, sometimes, to pull out detail. What a gift you are giving some future parent or WG patient! You tell us when your granddaughter starts to feel better! It will be a real encouragement to her cheerleaders on this site, and a continuation of that narrative.

Regardless, I was cheered to read your last entry on Katie's condition.

jola57
03-29-2009, 01:38 AM
Its so individual, I started to feel the pain relief gradualy but quickly, the spitting blood part took a few days, kidney were never a problem. In Katie I suspect it will be very quickly, children are more resilient and bounce back quicker. It will be mostly looking out for relapses. Please make sure your daughter looks at our little forum, doctors are great (I'm married to one) but most don't have the necessary understanding of the disease since it is so rare and it's us the suferers that are here for each other with such wealth of information. I am glad you found us and we can share our little wisdoms with you.

Doug
03-29-2009, 02:39 AM
I felt- and feel- my role as a Weggie patient is to let every new doctor I see know I am a Weggie patient in remission. Most of them are seeing a Weggie for the first time, so they get the full story, bless them! (You know I can go on and on!)

My pulmonologist is great! I always refer new doctors back to him, and, with my permission of course, he talks at length with them about my condition or shares data, whatever they need to feel comfortable with me.

I have had doctors who were unwilling to deal with my health issues because I am a Weggie, so I've had to find another doctor with a more open mind AND a bigger curiosity about an unusual medical condition.

Grandma2Katie
03-29-2009, 02:34 PM
If the entries here and in the other thread can help another family, that would just wonderful. This is a terrifying thing to go through. It was far worse when we all knew she was sick but didn't know why. Thank heavens the diagnosis was made as early as it was.

Cindy

jola57
03-29-2009, 03:45 PM
I know first hand how important our little group is, the wealth of information and just to be able to vent is wonderful. Knowing that others are experiencing the same symptoms and finding out that I can expect others gives me the courage to face whatever comes my way without fear of the unknown. Warm hugs to Andrew for starting it and all weggies in this forum.

Carol
04-03-2009, 11:10 AM
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, 01:36 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

Sangye
04-04-2009, 01:55 AM
Lisa, you're such an inspiration to me! You're helping me to reconnect to a spirit of optimism and hopefulness I haven't had since early on.

I look back and see it was the blood clots that just did me in--physically and emotionally. They happened within days of getting diagnosed and starting treatment. I was barely coming to terms with the Wegs and the drugs I'd have to take, and it just put me over the top to be even weaker, more damaged, have more dietary restrictions, and have to wear full-length rubber compression stockings through an entire sweltering summer while on high-dose pred. And it's not like it ended there--repeat clots, and lots of vein damage/ swelling in my legs has kept me from walking.

I'm starting aquatics physical therapy soon--that should make a big difference in getting stronger. Gravity just ain't working.

Anyway, thank you, and thank you to everyone for showing me what life can be like. :)

andrew
04-04-2009, 01:36 PM
I am enjoying this relaxing form of learning and I am slowly getting better just like with the WG.
LIsa

Sorry in advance for the totally off-topic post but....

That's great news, Lisa. I think I'd like to learn an instrument. I could play the piano and clarinet when I was in school and to a lesser extent, the saxaphone (Homer Simpson: 'Saxomofone'). Perhaps we can expect to see 'Lisa and the Weggies' or perhaps 'The Vasculitis Players' at a venue near you? :D

Hey!!! I reckon 'Cytoxan' would be a great name for a heavy metal band. What do you think?

Sorry ;)

Doug
04-05-2009, 12:40 AM
Don't know, Andrew. Heavy metal has been implicated as one possibility for development of Wegs. "Cytoxan and the Bunny Rabbits from Hell".:D (just add a guitar to the "New Posts" bunny)

Jack
04-05-2009, 01:21 AM
http://i25.photobucket.com/albums/c56/1955diesel/rockbunny.jpg

Sangye
04-05-2009, 01:31 AM
This just made me bust out laughing. I almost spit my oatmeal onto my monitor. :D Jack-- all of you-- you are hysterical.

Doug
04-05-2009, 03:16 AM
Thanks, Jack, meet the band in my garage in 30 minutes! They want to thank you for the cracking new logo!:D

Doug
04-05-2009, 04:46 AM
p.s. I created a T-shirt/bumper sticker design for the new band, but I'm not clever enough on the computer yet to post it. :mad::confused:

Jack
04-05-2009, 07:53 AM
To post pictures in the Forum, you first need to upload them to an image hosting service such as Photobucket. (http://register.photobucket.com/?ref=headerregister)
The photo will then be given a web address that you can paste into the Insert Image box at the top of the Reply page (the icon is a picture of some mountains).


This should probably all be posted in a different section. I think we've hijacked the thread!

Doug
04-05-2009, 10:47 AM
So true Jack! I opened a new thread called, of course, CYTOXIN And The Bunny Rabbits From Hell Band for all of these misplaced bunny rabbit entries. I confess to loving them- BR'S-, and feel they have given new hope to researchers asking that perennial question, "What exactly do these Weggies have in common that might lead us to a cure for weggieitis??" :D

Sorry, Andrew! I know we will have to behave better in future, especially since you are policing people from at least five time zones around the world, and those of us on Prednizone, not to mention those of us not on Prednizone, seem to relate BRs to some spiritually realized state of mind: "Yes, I do talk with bunny rabbits. They have a lot more to say than my African violets, and they are a lot less stressful than people.....!" :p

andrew
04-05-2009, 01:19 PM
HAhahaha..you guys are hilarious. LOVE the new bunny guitar logo.

You can actually attach images to your posts by clickin 'manage attachments' in the reply screen (you have to scroll down to see it).

coffeelover
04-06-2009, 12:59 PM
Hey guys! I love your creativity.

I have not been online for a few days and I come back with a smile that won't go away. Very good logo (album cover) If only our band could play as well.....
Lisa

Jack
04-06-2009, 04:41 PM
You can actually attach images to your posts by clickin 'manage attachments' in the reply screen (you have to scroll down to see it).

Ooo! I didn't know about that one. It saves all the PhotoBucket messing.

6

Doug
04-06-2009, 09:07 PM
On the other hand, I learned about Photobucket, a better option than keeping lots of phtotos, etc. on my computer. If you decide to release an image to the public, too, you can earn a little money in royalties. Just the ticket for a retiree, eh!? Haw! :D While attachments are a lot simpler than that, they can't be as much fun!

Doug
04-06-2009, 09:09 PM
Hey guys! I love your creativity.

I have not been online for a few days and I come back with a smile that won't go away. Very good logo (album cover) If only our band could play as well.....
Lisa

...or something other than that infernal heavy metal! The boys just don't have the bodies for it!

coffeelover
04-07-2009, 11:16 AM
Yes, neither does this girl! My guitar lessons are of the classical nature. Quiet, nylon sgtrings, not plugged in......but I still like the album cover.

Today in honor of our "funny bunny" stories, I bought a rabbit dressed in a winter coat (only 30 degrees today in MN) and hung it from my car mirror.

He makes me smile each time I look in that mirror.;)

Doug
04-07-2009, 11:47 AM
:D Yes, Boccherini wrote a real fandango for guitar!

I personally am a J.S. Bach fanatic for reasons that touch on one of two nixed topics. SDG, as he frequently signed off on his manuscripts, SDG. A little musician talk for you!

Time was I would go fishing, but I found the birds more interesting: they came around more frequently than fish, were pretty, and they sang, too. What follows is a birder (twitcher) story, no doubt more interesting to me than to you: Once, the first summer after I was diagnosed as a Weggie, i.e. six months later, June of 2004, I intended to clear out the previous year's litter from the hanging flower pots outside the kitchen window. But I hadn't the strength or ambition to do it. Never mind, a mourning dove pair started a nest. Hee, hee! "A nest", which for them is to stick two twigs together, then lay two eggs. I should laugh! They hatched! And there I was, proud uncle of two squabs. The squabs grew and become fledglings. "Aha!, now I can clean out the mess!" I thought. They laid two more eggs. And they hatched and grew into fledglings! I submitted: Two more eggs. Etc. Etc. "That's the spirit, Momma and Papa doves! That's the spirit! It took awhile, but I finally crawled on your wagon!"

Six babies total fledged from that nest in the hanging basket, their only protection from hawks and owls a few straws of last season's flowers and the vigilance of their parents. When the season ended, there was so much, umm, litter in the hanging basket that I, immuno-suppressed Weggie, was afraid to touch the darn thing! Ha! It took till the next summer for me to clean that particular hanging basket.

Am I in the right place? :p

Oh yes. The church in the avatar is the very one on the street in Paris (rue de la Montagne Ste. Genevieve) where a friend lives. The bells of that very church drove the Baroque court composer Marin Marais crazy enough to kiss a Hell Bunny. (Having done that already to obtain the court position, he thought better of doing it again.) He resolved the stress, this dissonance, in his life by writing a piece for viola da gamba that, well, makes you crazy enough to kiss a Hell Bunny. Coincidentally, in that church, my friend prayed for my recovery when it wasn't certain which side of the "90% live/10% die" divide I would fall. (And "marais" is French for "swamp", I believe, just to leave no threads untied. When your last name is Swamp, your first name probably translates as "Peat", or "Mud" or "Bog Lily", but French truly isn't my language!). When Marais died, from blood poisoning from an injury caused by bringing down his baton (or whatever the big walkingstick-looking thing they used to indicate tempo with in those days is called: la stick??!) on his foot, he spoke these last words :"Next time I kiss the blaggityblarmblit Bunny Rabbit From Hell!" Life wasn't easy in the 18th Century!

Now, you might say this was "fuer Elise". Or you might not: That was a bit over the top!

Jack
04-07-2009, 05:02 PM
Doug -
I think your medication needs adjusting! ;)

Doug
04-07-2009, 06:20 PM
Jack- When I was in that "90% live/10% die" stage, in University Hospital, Denver, trending toward the 90%, but closer to the 10%, I had a phone call from Nebraska. "The thing your father and I love about you is your quirky sense of humor," my mother said to me. I'm afraid the medication isn't at fault! Of six themes in the entry above, five are dead true, just livened up for my amusement. ;)