How Long Before You Began To Improve?

[Doug]

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]

While the side effects are alarming, is there any other treatment available?

Cindy

[andrew]

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]

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]

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]

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]

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]

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]

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]

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