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  #1  
Old Tue Apr 17, 2012, 10:52 AM
glitterandlace glitterandlace is offline
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Was my dose of cyclosporin too high

Hi I am concerned,,, I was on chemotherapy for AA 5 years ago and currently relapsed. I am talking to a man in the same position as me. The subject of cyclosporin came up and I found out that he weighed 210 pounds and was on 300 mg of cyclosporin. I weighed 110 pounds and was on 600 mg of cyclosporin. I was also on 60 mg of prednisone. I am concerned now and wondering if my dose was too high or abnormally high?
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  #2  
Old Tue Apr 17, 2012, 04:54 PM
mscrzy1 mscrzy1 is offline
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Your drs. should have been monitoring your cyclosporine levels that whole time and probably were and you were unaware of their doing so. From what I understand, the cyclosporine dosage is different for everyone depending on how quickly your body metabolizes it in your liver. Your liver may have been metabolizing it quicker than that other man, therefore causing you to have to take a higher dosage in order to maintain the right amount of it in your system to get the treatment to work. He may have also had more side effects, causing his drs. to decide to lower his dosage. It's a tricky little thing.
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Angie

36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil
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  #3  
Old Tue Apr 17, 2012, 07:36 PM
glitterandlace glitterandlace is offline
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Quote:
Originally Posted by mscrzy1 View Post
Your drs. should have been monitoring your cyclosporine levels that whole time and probably were and you were unaware of their doing so. From what I understand, the cyclosporine dosage is different for everyone depending on how quickly your body metabolizes it in your liver. Your liver may have been metabolizing it quicker than that other man, therefore causing you to have to take a higher dosage in order to maintain the right amount of it in your system to get the treatment to work. He may have also had more side effects, causing his drs. to decide to lower his dosage. It's a tricky little thing.
They started me out on that dose from the very beginning. How did they know how my liver would react in the beginning? I was just wondering if any other female my weight was on a similar dosage to me. That's all. I have my own reasons for not trusting the doctors I had, so do not want to ask them.
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  #4  
Old Tue Apr 17, 2012, 11:29 PM
dfantle dfantle is offline
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From what I understand the dose is based on weight AND blood levels. My doc wants the levels in my blood to be around 200 ( can't recall the measurement, just the #). I'm just 2-1/2 weeks post horse ATG and started off taking 700 mg/daily. It's been a bit challenging to not be higher than the 200 level so she's gradually reduced my daily intake and I'm now at 650mg/ daily. Depending on my counts tomorrow, the daily intake may change again. I think there may be different schools of thought on the levels different docs want you to maintain. Mine has a ton of experience with AA and so I trust her judgement, but of course would rather take less if I could.
( my weight is 130 & I'm 5'8)

Sent from my mobile phone
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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  #5  
Old Wed Apr 18, 2012, 01:00 AM
Hopeful Hopeful is offline
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That's a high dosage...

Hi glitterandlace,

How long were you taking 600 mg/day?

The old standard protocol from NIH in the 1990's recommended 12mg/kg/day of cyclosporine for 6 months. For someone your weight, that would work out to 600 mg/day. The thinking back then was that more-is-better.

Some of the newer protocols recommend a maximum of 5 mg/kg/day, which is about 250 mg/day for you. The thinking now is that a lower dosage provides similar benefits with less toxicity. The newer protocols also don't set an arbitrary time for stopping the drug.

When I received ATG, my doctor was following the old protocol. I was 105 lbs and was taking 575 mg/day. I did this for a month.

I consulted with an AA expert, and he told me about the newer studies and said to lower my dosage to 5 mg/kg/day. He said to not even bother looking at my trough at this lower dosage. I metabolize cyclosporine quickly, so trough measurements aren't beneficial. My tolerance of the drug greatly improved at this lower dosage.

I really think you need to be your own health advocate with these diseases. Pay attention to how you feel, research side effects that you may be experiencing, and communicate your concerns strongly to an expert.
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48 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #6  
Old Wed Apr 18, 2012, 03:38 AM
glitterandlace glitterandlace is offline
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The real reason I asked this question

Hi... I was having symptoms of overdosing/allergic reaction on cyclosporin (swollen tongue, hives, itching), and I told my doctors this. They kept testing me and said I was fine. Turns out after a chat with the nurse almost 3 months later that I was NOT supposed to take the cyclosporin the morning of my labs... The doctors NEVER told me this. The first day, I took the labs correctly, my doctors immediately pulled me off Cyclosporin and told me my levels were toxic!!!!! I was off it a while and started back on a lower dose like 400-500 mg. But I was on that toxic dose for like 3 months!!!! I also believed the prednisone at 60 mg per day was too high. When I started complaining about it, I found out the doctor was on vacation and FORGOT to leave tapering directions for me. The new doctor wanted me to take 60 mg a day for 2 more weeks until my normal doctor got back, because he said I wasn't his patient so he couldn't lower me! I threatened to taper my self off, cause I had been on 60 mg per day for over 2 months!!!!! I have Organ damage now because of the MEGA doses. I had to go to the County Hospital because I had no health insurance. That is ONE of the reasons I am choosing not to do chemotherapy after I relapsed this time. Am I the only person this has happened to?

Last edited by glitterandlace : Wed Apr 18, 2012 at 03:48 AM.
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  #7  
Old Wed Apr 18, 2012, 05:38 PM
triumphe64 triumphe64 is offline
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My first doctor didn't know how to use Cyclosporine or even prednisone. She was just a regular oncologist. I now go to a hematologist at the local medical school who specializes in anemia.

I suggest you find a GOOD doctor rather than your do it yourself approach.
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Dallas, Texas - Age 72 - Pure Red Cell Aplasia since March 2005 - Tried IVIG - Then cyclosporine and prednisone in ever changing combinations. Then Danazol, was added. Now only on Danazol and counts are normal.
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  #8  
Old Thu Apr 19, 2012, 11:58 AM
dfantle dfantle is offline
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Talking

Regarding the high levels of prednisone you were on for 2 months, that's terrible. No excuses on the docs part. Also, the lab should have been asking you the last time you had taken the cyclosporine (mine does every time).

If you have relapsed, I wouldn't let that that deter you from seeking treatment, however. I personally would base it on how transfusion dependent you are, and would look into seeing if the National Institute of Health would accept you as a patient. Although you have to pay for housing which can be pricy where they are, all medical care costs are 100% free for everyone who is a patient there, and the Drs are the best. They have a team who treats this so know exactly what you need before, during and after treatment. They'll then also work with your team when you return home to make sure they follow the protocols. A number of people on this site can help you figure how to contact them, if you want to.

Its crazy how on top of your own care you have to be. When I left the hospital following my ATG treatment they hadn't prescribed the prednisone so I asked about it and the Fellow who checked me out ( though not the main doc, should have known) said no. I am SO thankful for this site because I remembered reading about the prednisone and luckily have my Drs email address. I asked on this site, was told I needed it and wrote my Dr. who immediately responded and prescribed it *-the hospital had messed up. *I did miss 1 day of it, but fortunately that was all and at 3 weeks out, no serum sickness yet. Today I'm reducing to just 5 mg so almost off it .

Best,
Sent from my mobile phone
__________________
Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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  #9  
Old Sun May 27, 2012, 05:50 AM
glitterandlace glitterandlace is offline
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Hi Thank you so much for answering. I was originally diagnosed in 2007. I was on 600 mg a day for like 3 months before they lowered it. I wish I would have known then, what I know now. Like when they said not to eat raw fruits and Veggies. That was the time in my life where I should have been eating the most raw fruits and Veggies. I wish I would have researched the doses and educated myself a bit better. I strongly advise patients of AA to get 2nd and 3rd opinions and to education themselves on those dosages and side effects of all the possible medications they can choose from. I am glad I wasn't the only one who was MEGA dosed. It brings some comfort but still doesn't take away the fact that it was done me. It traumatized me so much, that I am refusing the treatment this time around when I relapsed. =-( Thank you for sharing your information with me.

Quote:
Originally Posted by Hopeful View Post
Hi glitterandlace,

How long were you taking 600 mg/day?

The old standard protocol from NIH in the 1990's recommended 12mg/kg/day of cyclosporine for 6 months. For someone your weight, that would work out to 600 mg/day. The thinking back then was that more-is-better.

Some of the newer protocols recommend a maximum of 5 mg/kg/day, which is about 250 mg/day for you. The thinking now is that a lower dosage provides similar benefits with less toxicity. The newer protocols also don't set an arbitrary time for stopping the drug.

When I received ATG, my doctor was following the old protocol. I was 105 lbs and was taking 575 mg/day. I did this for a month.

I consulted with an AA expert, and he told me about the newer studies and said to lower my dosage to 5 mg/kg/day. He said to not even bother looking at my trough at this lower dosage. I metabolize cyclosporine quickly, so trough measurements aren't beneficial. My tolerance of the drug greatly improved at this lower dosage.

I really think you need to be your own health advocate with these diseases. Pay attention to how you feel, research side effects that you may be experiencing, and communicate your concerns strongly to an expert.
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  #10  
Old Sun May 27, 2012, 05:54 AM
glitterandlace glitterandlace is offline
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Do they do alternative therapy there? The whole purpose of prednisone is only to prevent serum sickness from the ATG right?

Quote:
Originally Posted by dfantle View Post
Regarding the high levels of prednisone you were on for 2 months, that's terrible. No excuses on the docs part. Also, the lab should have been asking you the last time you had taken the cyclosporine (mine does every time).

If you have relapsed, I wouldn't let that that deter you from seeking treatment, however. I personally would base it on how transfusion dependent you are, and would look into seeing if the National Institute of Health would accept you as a patient. Although you have to pay for housing which can be pricy where they are, all medical care costs are 100% free for everyone who is a patient there, and the Drs are the best. They have a team who treats this so know exactly what you need before, during and after treatment. They'll then also work with your team when you return home to make sure they follow the protocols. A number of people on this site can help you figure how to contact them, if you want to.

Its crazy how on top of your own care you have to be. When I left the hospital following my ATG treatment they hadn't prescribed the prednisone so I asked about it and the Fellow who checked me out ( though not the main doc, should have known) said no. I am SO thankful for this site because I remembered reading about the prednisone and luckily have my Drs email address. I asked on this site, was told I needed it and wrote my Dr. who immediately responded and prescribed it *-the hospital had messed up. *I did miss 1 day of it, but fortunately that was all and at 3 weeks out, no serum sickness yet. Today I'm reducing to just 5 mg so almost off it .

Best,
Sent from my mobile phone
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  #11  
Old Tue Jun 5, 2012, 01:17 AM
dfantle dfantle is offline
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Yes, my understanding is prednisone is just to prevent serum sickness.

The NIH definitely does the standard treatments but also has studies for patients who have relapsed. The big advantage would be they are very experienced with AA, will definitely dose you correctly, and your only costs will be travel to and from and housing. All medical expenses are completely covered while there. The disadvantage is having to stay there for a period of time they set for you if you opt to do treatment there. But once they see you they also may decide to guide your treatment where you live.

Excuse typos, sent from my cell phones
__________________
Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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