Cyclosporine Taper.

[ssdavi71416]

So I visited my Hematologist today and she has decided to start a taper. I am currently on 300 mg/day and as of today I will go to 200 mg/day. After two weeks I will go to 100 mg/day and then 4 weeks from now I will be off cyclosporine. I am excited yet a little apprehensive. I received my ATG treatment in April 2012 and since then have had my constant security blanket of cyclosporine. My Hgb is 13.5 and my WBC is 4.3, but my platelets went from 130 to 110 since last month. I am looking forward to better kidney functions, lower blood pressure, fewer headaches and maybe eventually playing in the dirt again. What are your thoughts or experiences with cyclosporine taper?

[Hopeful]

First off, congratulations on your great response to the ATG!

Ahhh...the cyclosporine taper....questions near and dear to my heart

First I will share what my AA/MDS experts told me on this issue. Then I will share what my own experiences have been.

If they read your thread, my experts would probably say, "Why the rush to taper?" Have your counts plateaued for 3 months? If they are still rising, they would say to delay the taper.

Then my experts would say, "Why are you tapering so quickly?" They recommend tapering only 25 mg every 3 months! The time when this is most critical is when you are dropping below what is considered the minimum therapeutic dosage of cyclosporine, believed to be 2 mg/kg(of body weight)/day. The reason for the slow taper is because if you started relapsing or turned out to be cyclosporine dependent, you would want to know the lowest possible dose that you would need to take to maintain counts. Otherwise, you would have to restart on a high dose. Also, I believe, your marrow needs time to adjust to fighting-the-fight on its own. That bad T-cell clone is still there after ATG - although hopefully much, much smaller in size.

Now my experience...
My local doctor is not an expert in ATG. He wanted me off cyclosporine as quickly as possible. So, it was always a struggle to follow my expert doctor's advice. I started tapering while my platelets were still slllooowwwlllly rising, against my expert doctor's opinion. I tapered 25 mg every 2 months at first (my idea of a compromise to the two opposing doctors' views). Sure enough, once I dropped below 2 mg/kg/day, my platelets stopped rising. They plateaued as I continued my slow taper over the next 9 months. My expert reminded me that I should not have rushed to taper nor should I have rushed the taper. Mind you I had been on cyclosporine for over a year when I started tapering and my tapering was pretty slow by most standards! I've been cyclosporine free for about 4 months now. It's nice being off. Since stopping cyclosporine, my platelets have slowly been trending down. I am still hopeful that they will plateau again, albeit at a lower level. Of course, I am also nervous for my next CBC until this happens!

If I had to do it again, I think I still would have started the taper when I did, but I would have hung out at that minimum therapeutic dose until my platelets had plateaued for 3 months.

Best of luck with your taper decisions. I hope it goes well for you! You had a much quicker response to the ATG than I. So perhaps your marrow is stronger as well! I am interested in hearing your experience with it as well as others.

[ssdavi71416]

Hopeful

Thank you for your response. I know it sounds a bit extreme as far as the taper goes but it seems that I have been stable for a long time. The insecurity of going off the cyclosporine is a lot scary. but I guess nothing ventured nothing gained. Hopefully if my counts go down quickly then I will be able to go back o quickly. It is interesting how to determine the therapeutic dose. Maybe all will be good. I have heard that sometimes cyclosporine has its own toxisity and suppresses the marrow itself. Not sure if this is antidotal or not but I guess with the rarity of AA all things are somewhat antidotal.

[KMac]

Scott,

It truly is uncanny how closely our paths fighting SAA have corresponded. Just yesterday my doctor started me on the cyclosporine taper as well! Also with a 100 mg/day decrease, although I have been on 500 and now will be down to 400.

I asked my doctor the same question you brought up in your last post, i.e. whether cyclosporine may have a marrow toxicity and thereby sometimes reduce counts. He basically said it was possible but not likely.

My largest issue is neutropenia - leukopenia in fact (low WBC across the board). Broadly speaking, I've found reports on line at the FDA website stating each of the three drugs I am on (cyclosporine, acyclovir, amlodipine) very occasionally reduce WBC. So as I taper, I very much anticipate seeing what my WBC will do. My doctor says it is unlikely the Meds are keeping my WBC down, and I know he is statistically correct to say so, but the thought that I could get better with fewer instead of more drugs is sure appealing. We can hope!

One weird thing with my WBC that makes me wonder if the meds could be keeping it down, is that my lymphocytes never recovered post-ATG. They were well over 1000 pre-ATG, now they run about 500-600. I attended an NIH webcast where Dr. Townsley had a graph of lymphoctyes post-ATG (horse vs rabbit). In the graph, those counts are hit long term with rabbit, but not horse. I had horse. My Mom asked her why this could be the case with me, and Dr. Townsley basically said my low lymphocytes are unexpected. So, could something else be keeping them down? Could it be cyclosporine or the other meds I am on?

One more thing, I have found it fairly easy to raise my often borderline-scary low ANC. It rises dependably when I get sick (knock on wood), and I fight off the infection without additional drugs (last month with a sore throat my ANC went up from 640 to 2040, an I was better within a week). And it appears to rise when I exercise - last week my ANC fell to 560. My doctor was concerned and wanted to see me again. Yesterday I jogged 1.5 miles to my clinic appointment, arrived sweating, took my CBC, and my ANC was 1480 (this happened once before when I jogged to clinic). So I'm sort of like a snow globe - shake me up with exercise, and watch the white come out !

...all good signs hopefully that contributed to my doctors decision to try the taper (That and my tired kidneys, high serum creatinine, and high blood pressure - and maybe my frequently asking "can I start the taper yet?").

Of course I too worry about falling counts with a taper, but after 18 months I am very ready to give it a try.

Best wishes on your taper!
Kevin

[Chirley]

That leads in to my question.

If the Hb rises due to haemoconcentration (dehydration) does the ANC also get a false elevation?

[Hopeful]

My doctor told me that exercise right before a CBC would cause a temporary rise in WBCs.

[Neil Cuadra]

Originally Posted by Chirley

That leads in to my question.

If the Hb rises due to haemoconcentration (dehydration) does the ANC also get a false elevation?

No. The ANC computation depends only on the white count and the distribution of the types of white cells.

[Chirley]

Thanks Neil.

[marmab]

I am one of those people who had an adverse response to cyclosporine. In me, in addition to the widely known, common side effects, it triggered hemolysis. My red cell count only went up after discontinuation of CsA. Interestingly, doctors at Dana Farber (whom I saw for a second opinion) said that this is more common than most people believe. Also interestingly, the doctors said that cyclosporine is not used at that institution at all.

[MelanieW]

I also go to Dana Farber where they use tacrolimus instead of CsA.

I started a tacrolimus taper in April 2013 at my own insistence - despite partial response. By July 2013 counts were up slightly and this time my hema. was more on board and reduced another 1 mg.

For what it's worth, at the rate I am tapering (1 mg every 3 months) it will be 2+ years until I am (hopefully) completely done.

[miraclesheals]

Dear Ssdavi

I was ever grateful for the hopeful message that you sent me when I was receiving blood and platelet transfusions. I was a late responder. I did not respond until the 9th. month. I received the ATG Treatment in October of2012. I was struck by hurricane Sandy shortly after. Four unrelated donors offered me their bone marrow at Sloan Kettering. The doctors felt like I was in grave shape and that they were concerned that I might not respond to the transfusions anymore. I saw five doctors and finally found a great doctor who said that he had "cautious optimism for me." His name is Dr. David Araten. He is an intelligent and compassionate doctor. He helped council me when I was living in the hotel. I decided to wait and finally received a response to the ATG treatment.
I was afraid that although the transplant could cure me that it could also kill me. I waited and I have been transfusion free ever since. My hemoglobin is 11.8 My platelets are 70. I was told that cyclosporine can damage the liver. My hematologist told me that stopping cyclosporine can sometimes have an adverse reaction and that people's counts can increase. I can not give advice on what to do but I asked the doctor not to decrease my cyclosporine anymore because my hemoglobin has been on a slow rise. I was taking 250 mg originally and now he has me on 150. I am actually avoiding going there unless I feel I truly have to go get my CBCs done because I do not want him to wean me off these drugs. I do not advise anyone to do that but I am not going to risk a relapse. Many people speak about falling once they are off the 25mg. dosage.
Either way I have continued my spiritual work, improving my lifestyle, praying and eating more organic fruits and vegetables.
I told all of my friends how grateful I was for this forum. Just a few words can really encourage a person. I am back home again. I was living at a hotel without an immune system shortly after my ATG as a result of Sandy. I am ever grateful for this site.
Blessings and I do hope you collect as much information as possible and speak to a few professionals. I don't believe in weaning off these pills if your levels are falling. My platelets have been fluctuating and I am not risking it right now but that is my decision. I may be wrong. Blessings