Prednisone

[Sangye]

I encourage you to get your mom into physical therapy as soon as possible. I don't technically have steroid myopathy, but even more than 2.5 years after stopping steroids, I have almost no muscle mass and have a very difficult time forming any. I've only recently started pool physical therapy and it's wonderful. I'm not falling anymore. I should have been put in PT way back and I wouldn't be in this shape. My Wegs specialist is the one who finally mentioned it.

[lbrant]

Jack and Sangye thank you both for your quick replies. This is very hard for me because my parents live 4 hours away from me and my sister is dealing with most of this. to complicate things my dad has just finished radiation treatment for throat cancer. An update as of today, My mom was sent to the emergency room because she seemed to be disorientated and her blood pressure had plummeted. The ran tests and gave her some fluids and oxygen and she seemed to improve. Unfortunately this hospital does not deal with W. G so she was transported to another one . As of this moment the doctor there said that they have not found anything on the blood test and he would run a few more tests. He also told my sister that she has become deconditioned and that could be the cause of her lossing her breath when she walks. We have talked to mom about physical therapy and she is fighting it but maybe we can convince her to use a cane or walker to help her feel more secure so that she can walk more. I will relay your message about the physical therapy especially the pool type. Keeping our fingers crossed that they figure out what has caused this new development. She is also on Cyclophosphamide and Batrium along with her thyroid medication and blood pressure meds.

[Sangye]

Why is she fighting physical therapy? I can understand fighting the drugs, procedures, etc... We ALL get pretty sick of that stuff!

I hope they figure out why her bp dove. You've got to get a Wegs specialist involved. Not just a doc who's heard of Wegs or maybe has treated a few patients with it.

[Cindy M]

Hi Gwenllian, I noticed under your name it says Ritixumab success. On August 6th I did my first round of IV with ritixumab. I haven't really noticed any improvement. I have been experiencing a bit of an upset stomach. I was wondering how long before you felt better? Was it immediate or did it take some time? I go for my second round on August 20th.

[Sangye]

And Gwenllian, you must have had your baby by now. Boy, girl? How did it go?

[Jack]

I think I can understand why she is fighting physical therapy - at her age and being that unwell, she just wants to be left alone.

[Sangye]

That makes sense. Even at my age, I often want to curl up in a corner.

Plus, a lot of people think PT is only exercise, so if they're already struggling to get around, they can't imagine doing more.

[jola57]

My mom has some osteoporosis and for ages has been complaining about pain in all her joints and muscles. Nothing has ever been found besides just 3 to 5% osteoporosis. I think she has firbromyalgia. She has always been active in community service and still is now and then, BUT she shuffles when she walk, walks extremely slow, and hates any type of excercise. Talking to her about excercise you would think I am committing a crime. In the past year she has fallen 4 times, thankfully just suffering from some bruising. She takes insulin everyday for the past 6 months, but would do better if she was on a diet and excercise. There is just no talking to her about it or letting her know that if she picked up her feet higher she would have better ballance. Talking to our parent will always be the same as when we were little kids, so having a third person with authority might do the trick. She does listen to her doc but it lasts only for a few weeks.

[Shannon T]

Well I had been able to reduce to 10 one day and 5 the next; however my hearing loss has increased greatly so the E,N,T put me on 80 for 3 days, 60 for 3, 40 for 3 then 20 for 3. There is a chance for some hearing to return with this big dose. Hope so. Very hard to work if I can't hear my clients or the court.

I had just started to look like myself again, w/o the round face, and to lose weight so this is depressing.

I did get hearing aides I can function with less insecurity. Asking people to repeat is boring for them I know. But now I can hear and I am so grateful.

I hate the weight gain and the rounding of the face most of all. Vanity. The rest of it I don't notice. I'm not all that emotionally consistant to begin with so I doubt I would notice mood swings as unusual. Gained about 15 pounds but I am tall so it could be worse. However I still struggle to stay in the game and resent the setbacks.

I have remained up late all my life so wouldn't notice that either. I do feel more energetic and I like that effect. As I said, it could be worse.

[Jack]

BUT she shuffles when she walk, walks extremely slow, and hates any type of excercise. Talking to her about excercise you would think I am committing a crime ...........There is just no talking to her about it or letting her know that if she picked up her feet higher she would have better ballance.

I think you are on a loser there! That is exactly how I walk and I'm only 54 with full knowledge of the benefits of physiotherapy.

Sangye will nag me again now.