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Drugs and Drug Treatments ATG, Cyclosporine, Revlimid, Vidaza, Dacogen, ...

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  #1  
Old Sun Jul 19, 2009, 02:15 AM
B-OK B-OK is offline
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Cyclosporine: best scheme of intake

Dear friends,
at what time is it better to take cyclosporine capsules?

Oyr doctor said that it is better to take 1st half of daily dosage after breakfast and 2nd - after lunch.
But I guess that it is better to take to take 1st half of daily dosage after breakfast and 2nd - after dinner.
What do you think?
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  #2  
Old Sun Jul 19, 2009, 09:14 AM
JEZ JEZ is offline
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It is my understanding that the two doses should be taken 12 hours apart and that is what I did... one at 7 am and one at 7 pm... I always took mine after eating because I got so nauseous otherwise... some take it without food.... I think the important thing is to do it the same each time, with or without food... do not eat grapefruit at all or it will interfere with the cyclosporine. Side effects that I had were fatigue, excessive hair growth, swelling in my lower legs and ankles (airline compression hosery to the knee worked GREAT on that), over growth of my gums, some fluctuating nausea, and hand and leg muscle cramps (but that may have been due to the very high doses of steroids I had to take initially for the ATG related stuff)... but the cyclosporine really helped me regain marrow function.... slowly over two years mine steadily climbed... the generic did not work on me tho.... I had to take brand name Neoral. It seems some have different side effects than others. Also. the fatigue and nausea becomes like "background" in how you feel over time, not so intense. Hope this helps...JEZ
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JEZ, 50s, diagnosed AA Dec 2006, ATG one time, serum sickness resolved / took cyclosporine (Neoral) with delayed response but now with good labs/ recent kidney toxicity, so off of cyclosporine now and trying generic Imuran
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  #3  
Old Tue Jul 21, 2009, 06:38 PM
triumphe64 triumphe64 is offline
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Take Magnesium Oxide to offset muscle weakness that is caused by the cyclosporine. There are several magnesium products in the drugstores but usually only one brand of magnesium oxide.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #4  
Old Tue Jul 21, 2009, 07:44 PM
Hawaii Bill Hawaii Bill is offline
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Ever since I was treated with ATG and CsA, I have been taking potassium and magnesium supplements to offset the side effects of CsA, per the doctor's prescription.

My doctor has been monitoring my potassium and magnesium levels, and 10 Meq of potassium has been adequate (that amount requires a prescription, I think). I take the potassium with the CsA in the morning, and the bottle says to take it with a lot of water, and not to lie down for 30 minutes afterwards.

It has taken some time and experimenting to get the magnesium levels up to normal, and when it is low, I tend to have muscle cramps a lot. The magnesium I take is Magnesium Oxide, and for me, it works to take 2 400mg tablets in the morning with the CsA, and 1 400mg tablet in the evening with the CsA. I do not know if it the magnesium helps with fatigue, but it does keep the cramps from happening.

As far as the CsA is concerned, the insert says to take it at evenly spaced intervals and either with food or without, but to eat the same amount and type of food each time in order to keep the dosage constant. I don't do so well at following THAT, but I probably really should.

HTH
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Male, 56, dx Nov2006 VSAA (BMA:0%). Responded to ATG/CsA/Prednisone/Neupogen Dec 2006, but relapsed in June 2007. Counts are responding to using CsA 200mg bid alone since Jun 2008. Last PRBC tx: Jul 2008.
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  #5  
Old Tue Jul 21, 2009, 08:31 PM
JEZ JEZ is offline
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Quote:
Originally Posted by Hawaii Bill View Post
Ever since I was treated with ATG and CsA, I have been taking potassium and magnesium supplements to offset the side effects of CsA, per the doctor's prescription.

My doctor has been monitoring my potassium and magnesium levels, and 10 Meq of potassium has been adequate (that amount requires a prescription, I think). I take the potassium with the CsA in the morning, and the bottle says to take it with a lot of water, and not to lie down for 30 minutes afterwards.

It has taken some time and experimenting to get the magnesium levels up to normal, and when it is low, I tend to have muscle cramps a lot. The magnesium I take is Magnesium Oxide, and for me, it works to take 2 400mg tablets in the morning with the CsA, and 1 400mg tablet in the evening with the CsA. I do not know if it the magnesium helps with fatigue, but it does keep the cramps from happening.

As far as the CsA is concerned, the insert says to take it at evenly spaced intervals and either with food or without, but to eat the same amount and type of food each time in order to keep the dosage constant. I don't do so well at following THAT, but I probably really should.

HTH
I had such bad muscle cramps while on the cyclosporine but did not realize it was from the low magnesium... Wish my doctor had known that... I do know you have to be carefully monitored if you take potassium as if it goes to high it can cause cardiac problems..
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JEZ, 50s, diagnosed AA Dec 2006, ATG one time, serum sickness resolved / took cyclosporine (Neoral) with delayed response but now with good labs/ recent kidney toxicity, so off of cyclosporine now and trying generic Imuran
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  #6  
Old Wed Jul 22, 2009, 12:51 PM
Hawaii Bill Hawaii Bill is offline
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All in all, my doctor has done a really good job, considering how rare this disease is. He used to work at City of Hope, so I guess he's seen a fair share of bone marrow disease patients when compared to the average hematologist.
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Male, 56, dx Nov2006 VSAA (BMA:0%). Responded to ATG/CsA/Prednisone/Neupogen Dec 2006, but relapsed in June 2007. Counts are responding to using CsA 200mg bid alone since Jun 2008. Last PRBC tx: Jul 2008.
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  #7  
Old Wed Jul 22, 2009, 01:31 PM
triumphe64 triumphe64 is offline
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I have found out that it is best, if possible, to go to a doctor that teaches as well as seeing patients. My first hematologist worked mostly with oncology patients and didn't really know the nitty gritty of working with the cyclosporine.

I was getting good care, but now I go to a professor of hematology at the local medical school as well as Dr. Maciejewski at the Cleveland Clinic. They have really helped with working with the meds.
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #8  
Old Wed Jul 22, 2009, 06:20 PM
Hawaii Bill Hawaii Bill is offline
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Funny you should mention a medical school, as I was talking to a doctor friend of mine just last week and she said that the doctors that teach at medical school are apt to be better because they must keep up with current medicine... your post says the same...
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Male, 56, dx Nov2006 VSAA (BMA:0%). Responded to ATG/CsA/Prednisone/Neupogen Dec 2006, but relapsed in June 2007. Counts are responding to using CsA 200mg bid alone since Jun 2008. Last PRBC tx: Jul 2008.
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