Any questions that you want asked at conference

Karen,
I'm like you as far as the exercise goes. I do swim twice a week and do the weight-bearing exercises (running 3 miles). So far this has helped me through the years and I don't have any of the side affects. I'm 65 and also have a thin body (so far!). So, this will have to be a decision that you really think about. I also exercise because it helps keep my blood pressure down and also my colesteral.

My husband is also very active as we have a mini-ranch with two horses which keeps us both very busy! (By the way, my husband had asthma as a young adult and this is what brought it on--all the meds). So far neither one of us have not had any factures from the osteoporosis. He is always active with the yard work, horses, and loading hay.

I don't think my osteoporosis has changed in the last 15 years. It stays about the same.

I have to stay on prednisone now for my hemolytic anemia, I am hoping that I can do okay with 7.5 mg daily as this will be long term. My mother had osteoporosis with spinal compression fractures, she never took prednisone. I have osteoporosis now at age 61 and I take fosomax ,calcium/magnesium, and vit D daily. I'm going to switch to Boniva now.

I hate taking prednisone and am having trouble sleeping, some mood issues, fatigue and achy muscles, but I just going to have to stay on it. Am trying to exercise and do the things I can control to stay as healthy as possible.

Dru, I know it's hard to stay on prednisone when it has this affect on you. It did the same thing to me. But, for some reason the Decadron pulses didn't bother me as much--even though they are very strong. May be in the future they will find some other medication you can take. My mother-in-law also has osteoporosis, but she has taken a lot of meds the last 6 years for congestive heart failure and strokes. She is 84.

Just do your best to stay healthy in other ways.

Val:

Yes, I had all of my children before being diagnosed with ITP and Lupus. The odd thing is that I had APL antibodies prior to having children, but thankfully did not have a miscarriage. I didn't know until years after I had my kids that those antibodies were significant of what was to come. My sister had ITP at 16 and went into remission after a year. She had a baby at 19 and did just fine. Remissions are possible and having children with ITP is also possible. Sometimes is just takes some careful planning and two good doctors.

Karen:

I would not try TPO"s because of the APL antibodies. I already have one of the risk factors for clots and that would not mix well with the TPO's and that clotting risk.

As far as long-term Prednisone...I've been on it for the past 7 or 8 years and am beginning to have problems. I knew it would happen eventually. I've had two stress fractures in my left foot - didn't do a thing to cause it. I have also had problems with the disks in my neck collapsing which required surgery. I also have thin skin and bruise constantly.

Sandy,
Do you take the same dose as Karen? Also, can the doctors cut you back in the future? Sometimes it is so hard to determine what to take; all the meds have different side affects. I, too, notice I bruise easier since the Decadron pulses even though my platelets are still normal.

I am bruising very easily too even though my platelets are too high now.

DeeDee:

My usual daily dose is 15 mg's, but I have been on higher doses when I'm flaring (Lupus). My doctor and I have been trying to work toward getting off of Prednisone, but every med I try that would substitute for inflammation has given me more problems. They are the heavy duty meds like Methotrexate and Imuran. I've been trying for years to taper down, but the inflammation is really bad and pain meds don't work.

Sandy, I really love your new picture!! Do you feel a little better since you left your job? Being tired and stressed out sure doesn't help. But, I know you always like to stay busy! Hopefully, you will learn to rest a little more and this could help your symptoms improve; then, you could taper down a little more.

I wouldn't say I feel better since I left my job. The good thing is that I don't have the stress of getting ready so early in the morning. That was surprisingly hard to manage. I also don't have the job stress and having to stay stuck somewhere when I feel like crap. I still set my alarm and try to be as productive as I can. I always have projects and lists going at home and still push my limits, but I set the terms. I see my Rheumatologist today and we are probably going to raise the Imuran dose. We'll see how that goes.