Thursday, September 20, 2012
Sleepy
The burning in my stomach only happened the first few times I took the Cyclo. So far I haven't really noticed anything else. There's some extra hair on my face but that might be left over from the Prednisone. I've gotten shakey a couple of times but who knows where that's from. But I am SO SO wiped out right now. I just feel like crap. I'm extremely tired but have a hard time going to sleep at night. I also have a head ache today & my muscles are really sore from my workout Tuesday. I think the fatigue & head ache might be from weaning off the prednisone & I'm sure my blood protein is getting lower since I'm still spilling so it might be hard to recover from workouts. Who knows. But I skipped the gym for the first time in a month yesterday. I had a busy day but I was also just wiped out. I'm considering skipping it again today. That's when you know I'm really tired!
Thursday, September 13, 2012
Cyclo Day 1
My new tiny little pink nasty pills cost me ONE HUNDRED BUCKAROOS.
I told the pharmacist that insurance was pointless.
Then he told me without insurance it'd be $700.
Fine. Humph.
I took my first dose at 9pm. My stomach feels like its burning from the inside out.
This is awesome.
I told the pharmacist that insurance was pointless.
Then he told me without insurance it'd be $700.
Fine. Humph.
I took my first dose at 9pm. My stomach feels like its burning from the inside out.
This is awesome.
Wednesday, September 12, 2012
Reconfirmed- I really like my new doc
I'm back to my happy place so that's good. I wasn't able to get my hands on the Cyclo today- pharmacy has to order some. I should get it tomorrow afternoon. I've done more reading on message boards about others' experience on Cyclo. Across the board, the opinion is that it's way preferable to steroids. Most people said the side effects were negligible. Also, many said the GI problems get better after the first couple of weeks. Some had some bad reactions but I'm hoping to not relate to that group.
I got TWO calls from my neph's office today. The first was from the MA I saw who just wanted some more info on my recent labs. Then, this afternoon, Dr. R called for more info. He was just reviewing my charts and wanted to make sure he had everything. Very thorough. I was so glad he called
because I had forgotten to ask him a question yesterday.
The question was about my anxiety. It started back up again around the time I relapsed and has gotten pretty bad some days, even with as much as I've been exercising. Dr R listened to what I said & we had a good conversation about my options. We decided that I'll wait to get off the pred & see where I'm at, since steroids can contribute to anxiety. I feel good about that.
I feel like I'm in very good hands and the communication is excellent. So happy I switched. SO SO HAPPY.
Oh and P.S. - in the spot check he did yesterday, I'm spilling an estimated FOUR GRAMS of protein now. It went up a whole gram in just a week! Even on 30mg of prednisone! Crazy.
I got TWO calls from my neph's office today. The first was from the MA I saw who just wanted some more info on my recent labs. Then, this afternoon, Dr. R called for more info. He was just reviewing my charts and wanted to make sure he had everything. Very thorough. I was so glad he called
because I had forgotten to ask him a question yesterday.
The question was about my anxiety. It started back up again around the time I relapsed and has gotten pretty bad some days, even with as much as I've been exercising. Dr R listened to what I said & we had a good conversation about my options. We decided that I'll wait to get off the pred & see where I'm at, since steroids can contribute to anxiety. I feel good about that.
I feel like I'm in very good hands and the communication is excellent. So happy I switched. SO SO HAPPY.
Oh and P.S. - in the spot check he did yesterday, I'm spilling an estimated FOUR GRAMS of protein now. It went up a whole gram in just a week! Even on 30mg of prednisone! Crazy.
New Doctor, New Drug
Yesterday was my appointment with my new doc, Dr. R. He was really nice. I really like the Baylor Clinic where I saw him-- everything moved quickly & everyone was super nice. That means a lot to me. Its almost more important to me that I like the office staff than it is if I like the doctor. Almost. Anyhow, Dr. R didn't say anything new or mind blowing-- just stuff I already knew; whatever the research says.
To back up to yesterday morning, I got my latest results from my 24-hour urine collection-- I'm back up to spilling 3 GRAMS of protein. WOAH. I totally didn't expect that, especially since I'm back on a higher dose of prednisone. But it was good to have that information going into my appointment because I am sure the prednisone isn't working like it did the first time around. My only other option with the prednisone, besides to get off of it, is to go back up to 60mg, where I started in March, and start over. Uh, no thanks.
So the next drug you try is called Cyclosporine. Its the same drug most transplant patients are on. It totally kills your immune system, so that sucks. But it seems to work for a lot of people with FSGS. The benefits, as compared to prednisone, are that there are fewer side effects. I should be able to loose the weight I've gained, won't get moon face, mood swings, hormonal changes, etc... but Cyclosporine is known to mess with hair growth. Some have reported loosing hair & a lot have a reported more hair growing on face, arms, back {awesome}. It also can cause severe tremors in your hands, GI problems (burning in your stomach) & weird tingling sensations in your hands & feet. There are a lot of other reported side effects but those seem to be the main ones.
Dr. R said once you go on it, you stay on it for a year or two. This is bad because I really want to have another baby & while there are many people who have had babies while on Cyclosporine, its considered a "Class C" drug for pregnancy, which means its not desirable to take it while pregnant. It does cross the placenta. I've read a bunch of studies & the findings are that it doesn't cause birth defects but can contribute to low birth weight & premature birth. Prednisone is only slightly safer for pregnancy so I wouldn't necessarily want to be one that either.
I'll see Dr. A (my high-risk OBGYN) on November 8th & go back to see Dr. R on Nov. 13th. So by then, I'll be completely off prednisone & I'll have been on Cyclo for 2 months, so we'll be able to see what's what. It'll be very interesting to see what Dr. A will say. I was really hoping to be in remission & off drugs completely when I see her but that's clearly not happening. I'm sure Dr. A won't be thrilled about me wanting another baby.
So now to how I'm feeling... I've noticed a pattern in all of this. Whenever I get bad lab results, a change in medication, doc appointments, etc... I go through a day where I'm ticked off all over again that I have this freaking disease. I mean seriously... I'm 30 years old. I eat healthier than most. I exercise 6 days a week. I just want to be HEALTHY! This is a chronic illness; one I'll deal with forever. There's a chance I could have a great life (health wise) but it seems like I probably won't. It'll probably get worse. Regardless of what the doctors say, the pattern seems to be that if prednisone doesn't work, you start on this list of drugs & treatments & never really get off that train. This all just really blows. I'm young. I should be able to just have another baby if I want one & can afford one. I shouldn't have a pill box like some 70 year old. Its ridiculous.
I'm still kind of in that ticked off mode... I'll be over it soon. I have a lot of anxiety about starting Cyclo but at the same time, I'm really REALLY excited to get off prednisone. It'll take about 5 weeks. CAN'T FREAKING WAIT. It better be worth it.
To back up to yesterday morning, I got my latest results from my 24-hour urine collection-- I'm back up to spilling 3 GRAMS of protein. WOAH. I totally didn't expect that, especially since I'm back on a higher dose of prednisone. But it was good to have that information going into my appointment because I am sure the prednisone isn't working like it did the first time around. My only other option with the prednisone, besides to get off of it, is to go back up to 60mg, where I started in March, and start over. Uh, no thanks.
So the next drug you try is called Cyclosporine. Its the same drug most transplant patients are on. It totally kills your immune system, so that sucks. But it seems to work for a lot of people with FSGS. The benefits, as compared to prednisone, are that there are fewer side effects. I should be able to loose the weight I've gained, won't get moon face, mood swings, hormonal changes, etc... but Cyclosporine is known to mess with hair growth. Some have reported loosing hair & a lot have a reported more hair growing on face, arms, back {awesome}. It also can cause severe tremors in your hands, GI problems (burning in your stomach) & weird tingling sensations in your hands & feet. There are a lot of other reported side effects but those seem to be the main ones.
Dr. R said once you go on it, you stay on it for a year or two. This is bad because I really want to have another baby & while there are many people who have had babies while on Cyclosporine, its considered a "Class C" drug for pregnancy, which means its not desirable to take it while pregnant. It does cross the placenta. I've read a bunch of studies & the findings are that it doesn't cause birth defects but can contribute to low birth weight & premature birth. Prednisone is only slightly safer for pregnancy so I wouldn't necessarily want to be one that either.
I'll see Dr. A (my high-risk OBGYN) on November 8th & go back to see Dr. R on Nov. 13th. So by then, I'll be completely off prednisone & I'll have been on Cyclo for 2 months, so we'll be able to see what's what. It'll be very interesting to see what Dr. A will say. I was really hoping to be in remission & off drugs completely when I see her but that's clearly not happening. I'm sure Dr. A won't be thrilled about me wanting another baby.
So now to how I'm feeling... I've noticed a pattern in all of this. Whenever I get bad lab results, a change in medication, doc appointments, etc... I go through a day where I'm ticked off all over again that I have this freaking disease. I mean seriously... I'm 30 years old. I eat healthier than most. I exercise 6 days a week. I just want to be HEALTHY! This is a chronic illness; one I'll deal with forever. There's a chance I could have a great life (health wise) but it seems like I probably won't. It'll probably get worse. Regardless of what the doctors say, the pattern seems to be that if prednisone doesn't work, you start on this list of drugs & treatments & never really get off that train. This all just really blows. I'm young. I should be able to just have another baby if I want one & can afford one. I shouldn't have a pill box like some 70 year old. Its ridiculous.
I'm still kind of in that ticked off mode... I'll be over it soon. I have a lot of anxiety about starting Cyclo but at the same time, I'm really REALLY excited to get off prednisone. It'll take about 5 weeks. CAN'T FREAKING WAIT. It better be worth it.
Saturday, September 1, 2012
Shoulda been
I shoulda been done today. If I had not relapsed, today was the scheduled day I would have taken my last little 2.5mg of the drug from hell. Instead I went up to 30mg today.
Who the heck knows if going up again was smart but 20 sure wasn't doing anything so might as well.
One "comforting" thing I found out today is that all of this crappy weight I've put on this week may just be water after all, even though the Lasix didn't take it off. A friend in my group said she finds she has to take it a few days in a row consistently for it to come off. So I've added it back to my pill box for the next few days. Cross your fingers for me.
It makes me feel so vain that the weight is the biggest deal to me, immediately anyway. But it's not about vanity. It's about normalcy. A normal person isn't as unhealthy as I am while focused so much on their health. Plus the looking different is hard on my psyche.
I'm really praying this new doc has some answers for me. I need clarity. I know I'll get much sicker than I am now buy I just don't like changing my doses willy-nilly & not knowing what the crap is going on.
Who the heck knows if going up again was smart but 20 sure wasn't doing anything so might as well.
One "comforting" thing I found out today is that all of this crappy weight I've put on this week may just be water after all, even though the Lasix didn't take it off. A friend in my group said she finds she has to take it a few days in a row consistently for it to come off. So I've added it back to my pill box for the next few days. Cross your fingers for me.
It makes me feel so vain that the weight is the biggest deal to me, immediately anyway. But it's not about vanity. It's about normalcy. A normal person isn't as unhealthy as I am while focused so much on their health. Plus the looking different is hard on my psyche.
I'm really praying this new doc has some answers for me. I need clarity. I know I'll get much sicker than I am now buy I just don't like changing my doses willy-nilly & not knowing what the crap is going on.
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