Prednisone

[Doug]

Good for you! I hope the 8mg works well enough you can try that 7mg again soon!

[jola57]

Too fast no good. I know how much we all want to wean ourselves of off the dreaded pred but do take is sloow.

[Sangye]

Jack, you know this already for sure, but try either staying at one level for a few weeks, or do the alternating day thing when you do drop (8 mg, 7 mg, 8 mg...). Maybe a combo of the two. But I'm still SO happy you're able to lower it!

[Jack]

Knowing something and taking your own advice are not always the same thing!

I needed a small kick in the butt to remind me to behave myself with the pred reduction and I got it. It is 4:45 in the morning at the moment and I'm watching TV, but feeling much better. Can 1mg of pred really do that? My intention now is to stick with 8mg for the next month. My agreement with my Consultant was that I would aim at getting down to 7mg by November by whatever means suited me best, so I have plenty of time.

[Sangye]

I often give good advice. Wish I listened to myself.

[Doug]

Good that you are on an upswing. here I am 4:00 in morning blogging and web surfing. I can't cuddle to my hubby of 25 years and sleep alone, all because of the pred yet being without it is unthinkable. I too hate my look, especially when I was on my cruise vacation and had to wear my fat clothes, but life goes on.

I just am not clever enough to exit and recover where I was before! I've tried sopme strategies: none worked! Anyway, for swimming exercise (think "therapy") contact the Canadian Red Cross and see what they might offer in your area for adapted aquatics. They may not have any program in Mission, but they may be able to give you more information on this type of swimming. Also, http://adaptiveaquatics.org/

[jola57]

Both our boys went thru the CRC to get swimming ribbons to almost life gurad, and Mission swimming pool has excercise for aged etc, it's just that the water is sooo cold to me. I am going to Harrison Hotsprings for the weekend and wallow in the hot springs for two days -- oh bliss

[Doug]

Both our boys went thru the CRC to get swimming ribbons to almost life gurad, and Mission swimming pool has excercise for aged etc, it's just that the water is sooo cold to me. I am going to Harrison Hotsprings for the weekend and wallow in the hot springs for two days -- oh bliss

Youch! I know what you mean about the cold water! Harrison Hotsprings sounds blissful! There are hot springs a couple hours and more in Wyoming (Thermopolis) and South Dakota (Hot Springs, at Evan's Plunge, a popular spring-fed swimming pool). Another possibility, motels with swimming pools that people can use at particular hours (usually early morning) their clients aren't using them. Your local CRC might know of such resources. In the meantime, enjoy Harrison Hotsprings!

[lbrant]

I have question to ask all of you. My mom was diagnosed a month or so ago with Wegners. She has suffered tremendously with major muscle weakness. She finally saw her W.G. specialist and he said she had Prednisone Myopathy and that the injection that she thought was the chemo drug was actually a high dose of Prednisone to jump start her right before she left the hospital. She has been on 80 mg of prednisone every day since then and her weakness and imbalance ( to the point that she fell over twice ) has amplified each day. Has anyone here ever experienced this and from what I read it could take weeks to months to regain her muscle strength and she may actually need physical therapy. If anyone has info regarding please contact me here or directly through my email . She is 70's year old and we are also dealing with memory loss with her .

[Jack]

I seem to have steroid induced muscle myopathy and now have difficulty with walking, but this has only occured after more than 20 years of use. As I understand it, the sudden onset type such as you describe your mother having is much more common. It is also reversible when the dose drops below some sort of undefined threshold. Sorry to be of little help, but information on the subject seems to be thin on the ground.
I have also been through several years of tests from every hospital department imaginable to rule out all the other possible causes. Has your mother had a definite diagnosis? It appears that this can only be done by a process of elimination. If this has not been done, I would be reluctant to accept a doctor's guess.
As for memory loss - Wegener's can also affect the brain, but I'm unsure of the symptoms. As with most things Wegener's related, they are probably different in every case.