AA outcome

[JEZ]

I recently came off of Neoral (cyclosporine) when my creatine went up to 1.6 and my GFR went down to 33. Prior to that I had excellent course of recovery and my labs gradually improved to normal levels over 2.5 years while on 200 mg. of Neoral per day. Two months ago I started Imuran.... took it for 2 weeks with the Neoral then stopped the Neoral. My labs are trending down... My platelets dropped from 138,000 one month ago to 88,000 today. Of course I understand that I can live with platelets at this level and even much lower. But I am so grieved that they are trending down and rather rapidly and that my "remission" appears to be gone. What is to become of me? I do not want to go thru the trauma of platelets so low that I need transfusions every week... I know many of you are struggling with devastating marrow problems.... I hate to whine. I am fraknly afraid for my future now.... is there anything besides Neoral that can get my bone marrow going again but not mess up my kidneys?

JEZ

[michelle_lapuz]

hang in there Jez - I've heard people talk of their numbers dropping after coming off of cyclo but then stabilizing. Unfortunately we can't control these things - I find my greatest comfort is just letting go and accepting life as it comes, the good and the bad. Hopefully some good comes your way ;)

Michelle

[Hawaii Bill]

Hi JEZ,

Like you were, I am recovering my counts using 200mg of Neoral (but twice a day); so far my kidneys are hanging in there, but I am worried that eventually I might have the same problem as you, or when I eventually start to taper, the counts will drop.

I agree with Michelle, though. I remember that after my first round of ATG, when the doctor started tapering the CsA, my counts would drop, but then go up again (I was getting weekly CBCs).

It may be too soon to tell what is going to happen, but there is the hope that this is only a temporary drop, and that the Immuran will start to do its job, but that may take a while, too.

I guess all you can really do is watch and wait; but I understand how you feel... my counts dropped a little last month, and I was scared for the whole month until I got another CBC.

Please keep us posted, and know that we are all wishing the best.

[Hopeful]

Hi JEZ,

Did your kidneys recover after stopping Neoral? Are your creatine and GFR again at a safe level? If so, I wonder if you can continue Neoral in parallel with a much lower dosage. I've read that some people need as little as 25 mg bid to keep from relapsing. Of course, your kidneys must be recovered to try this experiment!

Also, I'd check to see if your doctor will let you monitor your chemistry panel more frequently while changing medicines or dosages so that you can catch the effects earlier.

I hope it is just a temporary slide while your body adjusts to the new meds. Hang in there!

[B-OK]

JEZ,
may be you can increase the dosage of Imuran?
Looks like it is less efeective and can be much safier? But only with creatinin tests

[JEZ]

Hi JEZ,

Did your kidneys recover after stopping Neoral? Are your creatine and GFR again at a safe level? If so, I wonder if you can continue Neoral in parallel with a much lower dosage. I've read that some people need as little as 25 mg bid to keep from relapsing. Of course, your kidneys must be recovered to try this experiment!

Also, I'd check to see if your doctor will let you monitor your chemistry panel more frequently while changing medicines or dosages so that you can catch the effects earlier.

I hope it is just a temporary slide while your body adjusts to the new meds. Hang in there!

Yes, my creatinine dropped to 1.2 and GFR went up to 43, which still is not fully recovered but much better. I like the idea of trying a "smidge" of cyclosporine with the Imuran....
JEZ

[JEZ]

Thank you all for encouraging me... I guess I kinda freaked out... our own platelets are so precious... and these particular ones were 2 years in the making... it just hurts to lose them, doesn't it? I am going to enjoy how good I feel off the cyclosporine and just flow with my doctor's adjustments. I am thankful that I have a good doctor.

JEZ

[Hawaii Bill]

Hi JEZ,

I think that Hopeful makes a good point about getting back on the CsA at a lower dose to help with the counts. Maybe your doctor will consider it if you bring it up, especially if your counts continue to decline.

Any news about your counts?

[Hawaii Bill]

Hi JEZ,

I read your post on the bleeding gums thread, and thought it would be better to respond on this thread re the CsA and kidney function.

My creatinine when measured by the hematology lab stays around .9 or 1.0, and my GFR has been 89. So far so good.

Were your levels as good as mine earlier when you started to take the CsA? Or were they borderline before they crossed into the danger zone?

Hopeful's experience and yours makes me wonder what happens to kidney transplant patients who are on CsA for good (as I understand it) but whose kidneys then begin to be threatened by the CsA? Perhaps they can be helped by Immuran, as you are. I will have to ask my hematologist about it. Maybe shoot off an email to Dr Paquette, too.

Makes me also wonder if I shouldn't try lowering CsA my dosage (with the doctor's approval, of course), just as a precaution against overloading the kidneys.

[Hopeful]

Hi Hawaii Bill,

Here is the RxMed website where I learned about nephrotoxicity and the 30% creatinine rule. This rule applies to patients treated with CyA for non-transplant reasons:

http://www.rxmed.com/b.main/b2.pharmaceutical/b2.1.monographs/CPS-%20Monographs/CPS-%20(General%20Monographs-%20N)/NEORAL.html

Scroll down to "Precautions".

[JEZ]

Hi JEZ,

I read your post on the bleeding gums thread, and thought it would be better to respond on this thread re the CsA and kidney function.

My creatinine when measured by the hematology lab stays around .9 or 1.0, and my GFR has been 89. So far so good.

Were your levels as good as mine earlier when you started to take the CsA? Or were they borderline before they crossed into the danger zone?

Hopeful's experience and yours makes me wonder what happens to kidney transplant patients who are on CsA for good (as I understand it) but whose kidneys then begin to be threatened by the CsA? Perhaps they can be helped by Immuran, as you are. I will have to ask my hematologist about it. Maybe shoot off an email to Dr Paquette, too.

Makes me also wonder if I shouldn't try lowering CsA my dosage (with the doctor's approval, of course), just as a precaution against overloading the kidneys.

My creatinine before taking CsA was 0.7 and GFR calc >85.

[JEZ]

Hi JEZ,

Did your kidneys recover after stopping Neoral? Are your creatine and GFR again at a safe level? If so, I wonder if you can continue Neoral in parallel with a much lower dosage. I've read that some people need as little as 25 mg bid to keep from relapsing. Of course, your kidneys must be recovered to try this experiment!

Also, I'd check to see if your doctor will let you monitor your chemistry panel more frequently while changing medicines or dosages so that you can catch the effects earlier.

I hope it is just a temporary slide while your body adjusts to the new meds. Hang in there!

Labs today (in parentheses are labs when came off CsA May 21 and had been on 50mg Imuran generic 2 weeks): Platelets 88,000 (148,000), WBC 5.00 (7.80), RBC 3.45 (3.60), Hgb 11.6 (11.4), Netrophils 60 (61), Creatinine 1.0 (1.6), and GFR calc 57 (33). So the good news is my kidneys have completely recovered and my RBCs so far are holding. The platelets and WBCs are trending down but not crashing as I feared they would after my last lab a week ago. My doctor increased the Imuran dose to 75mg today... hopefully that will do it. She does not do "booster" doses of CsA with Imuran... I am on Imuran only now. Thank you for your support.

JEZ

[JEZ]

Hi JEZ,

I read your post on the bleeding gums thread, and thought it would be better to respond on this thread re the CsA and kidney function.

My creatinine when measured by the hematology lab stays around .9 or 1.0, and my GFR has been 89. So far so good.

Were your levels as good as mine earlier when you started to take the CsA? Or were they borderline before they crossed into the danger zone?

Hopeful's experience and yours makes me wonder what happens to kidney transplant patients who are on CsA for good (as I understand it) but whose kidneys then begin to be threatened by the CsA? Perhaps they can be helped by Immuran, as you are. I will have to ask my hematologist about it. Maybe shoot off an email to Dr Paquette, too.

Makes me also wonder if I shouldn't try lowering CsA my dosage (with the doctor's approval, of course), just as a precaution against overloading the kidneys.

I think if your creatinine and GFR are doing so well you should stay the course, don't you? My doctor said I need to trust that if things don't look good she will respond. And that is what she did when the creatinine went up. Now that the platelets are falling, she has responded to that (see answer to Hopeful).... your kidneys seem to be doing great so.... I guess different people tolerate CsA levels differently. I appreciate your insights and thank you for responding to my worries!

JEZ

[JEZ]

I made an error in reporting my Imuran dosage. I was taking 100 mg and my doctor increased it to 150 mg daily. OOOOPS! I thought the pills were 25 mg each but they are 50 mg. My doctor is on vacation so I wait 3 wks. now to get more labs.... trying to trust and be patient....

JEZ

[JEZ]

For those of you interested in the use of Imuran when Csa has to be discontinued because of kidney toxicity, my labs today held at the same level they were at 3 weeks ago. I am very happy to have the platelets stay at 80,000 and the WBC, RBC, and Hgb remain good. For me, a dose of 150mg of Imuran per day seems to be what it takes. It is such a relief to know the platelet decline has been arrested. I go back in 2 months for another lab... Thank all of you for supporting me through this worrisome time. Hopefully things will just get better again from here.

JEZ