Cyclosporine taper question

[holmg418]

I have been trying to taper off cyclosporine for over a year. I was at 400 mgs per day a year ago and currently I am at down to 175 per day. I am more nervous about this process now because I am just below the recommended csa trough level. If I have a relapse I would like to know as soon as possible so we can just up my csa dosage and try to regain my counts and avoid going through the whole ATG process again.
My question is about the frequency of monitoring my blood counts. With this slow taper I am only seeing the doctor and getting lab work every three months. I am fine with only seeing the doctor every three months but I would like to have the lab work every 4 to 6 weeks. Does this seem reasonable or am I just a worry wart?

[Chirley]

I have been stable since last April. My new doctor told me last week that I only need a blood test every 6 weeks instead of every 3.... I told him that I won't know if I'm sick

It is scary being monitored less and less but it's part of the healing process.

I'm sure if you explained your concerns that your doctor will be happy to continue more regular testing.

Good luck

Regards

Chirley

[holmg418]

Thanks for your advice, Chirley. I will see my hematologist next month and voice my concerns. I am the first AA patient that he has had so we are both learning.

[ssdavi71416]

I would definitely ask for more frequent blood draws if you need them. As you indicated probably a talk with the Dr would be the best way.

[Hopeful]

I have had my blood draws once a month during my taper. It is hard to spot trends if the draws are spaced out every 3 months.

[triumphe64]

Since your doctor is new to AA, I think once a month is a good choice.

[Susan Ferreira]

I was diagnosed with AA in April 2011. Did ATG in Sept. 2011. Have not had a blood transfusion since Dec. 2011. Took 600 MG Cyclosporom for close to 9 months. Did taper in next 3 months and have not had any since Sept. 2012. Have still not had any blood transfusions since then ( 5 months.) Counts have been stable. Still far below normal,,,HCT 39, WBC 3.0,plateletts 58 but still no transfusions. My Dr. believes at some point the Rx is not keeping numbers "normal", that the treatment (ATG) is working and is not necessary to keep up the cyclosporum. This is hard for patients to accept. For me it has been true. If it comes back I think that I would have to think about 2nd round of ATG instead of going back on cyclosporum. Call me if you want. 860-651-9791. I also see Dr every 3 months now, but choose to have blood tests at lab every 6 weeks if I feel like it. I have a standing blood test form on file at lab.

[Lisa V]

I think once a month would be good under the circumstances too. Ken is 7 years out from his last ATG, and has been stable for quite a while now, but it's only been within the last year or so that his CBCs have gone to every 2 months instead of monthly. His doctor visits are less frequent.

We've found the doctors quite willing to tailor the schedule to what feels comfortable for us, particularly if there is any reason to monitor it more closely. After all, It's not costing them any extra to test more often!

[bochs4]

My brother never went more than 4 wks. without seeing doctor during his taper. His doctor was his hematologist. A can't imagine a doc with his first case of AA

[Lisa V]

Just out of curiosity, is there a reason you're seeing a doctor with no experience with AA? You're not far from Moffitt Center. I'd think they would have more expertise in that area.

[triumphe64]

Originally Posted by Lisa V

Just out of curiosity, is there a reason you're seeing a doctor with no experience with AA? You're not far from Moffitt Center. I'd think they would have more expertise in that area.

I had the same question. I know from experience that an experienced doctor is of great benefit.

[dfantle]

I've been out of touch lately because I just had a donor SCT 10 days ago.

What I reminded myself in December, when I totally stopped the cyclosporine in preparation for my SCT is, as I had been told by my Dr who has extensive AA experience (1), tapering is different for everyone & until one experiences how it affects them unfortunately there is truly no way to predict this.

1 week after stopping the cyclosporine, my transfusion & GCSF requirements started decreasing again as my counts started increasing, rather than decreasing as I feared. For me, it's possible the cyclosporine may have been holding my red cells, white cells & platelets at the low levels, which apparently can happen for some. Although I should mention my system tends to react differently to things than the majority of AA patients & this is why I mention it is different for everyone. Truly we won't know for sure if this improvement would have continued because of my impending scheduled transplant, which I had already delayed 3 months, hoping for improvement.

(1) I only mention my Dr's extensive experience so when I list drug levels, doses, share what she tells me... you'll know this is from a Dr who has treated AA patients for more than 20 years, has been on the AA/MDS advisory board for many years, has presented teleconferences for the AA/MDS foundation...BUT this said, everyone reading this has a history different than mine, Dr's with different patient experience & philosophies... & should NOT rely on my info for any medical decisions.

(To limit the length of this reply, I'll include more detail in a thread soon when I talk about my transplant & why I decided to proceed with the transplant instead of waiting several more months to see the true impact after stopping the cyclosporine)

Best of luck!

Sent via my smartphone, pls excuse typos.

[Neil Cuadra]

We're glad you made it through the transplant, Dena. You've got a brand new immune system!

Take care of yourself. We look forward to hearing more about your experience.

[MelanieW]

There is a lot of food for thought in these posts. I had ATG in March 2012 and last transfusion in April 2012. Counts have held low but steady - last month WBC 3.6, HGB 9.0 and PLT 34,000. I am ready to start tapering tacrolimus at the one year mark which is coming up soon - by coincidence next doctor appointment is one year to the day since my last Tx. Please note that my dr. feels otherwise and has indicated he wants me on full dose indefinitely (or I should clarify - until counts are at normal levels). I do think that the meds are holding back my body's ability to grow new blood cells.
Susan F. - I like you only see the dr. every 3 months with labs in between at the 6 week point if needed. I too feel that is plenty.
Dena - we emailed in the past. Best of luck to you - I am looking forward to reading your story when you are up to it!

[LoveRapheal1]

Originally Posted by triumphe64

I had the same question. I know from experience that an experienced doctor is of great benefit.

Yes I have a great doctor who is a specialist. I do know this because
I have read a lot of literature and have spoken with many specialists and he is the best one. He is the one with the best feedback and the most clever of all. I believe you find this out when you visit other doctors and get second opinions.

[LoveRapheal1]

Yes but I am a bit confused. You mentioned that you stopped the cyclosporine and your counts increased as a result. You also mentioned that you have decided to postpone the transplant 3 months.
Is this because your counts have increased and you want to see if they stabilize within the next few months? I would like to hear what has happened as a result of this decision. Another member on the forum mentioned that she threw her cyclosporine pills away and her counts increased. I would not risk that but maybe this can happen or just happen temporarily depending on the individual.

Originally Posted by dfantle

I've been out of touch lately because I just had a donor SCT 10 days ago.

What I reminded myself in December, when I totally stopped the cyclosporine in preparation for my SCT is, as I had been told by my Dr who has extensive AA experience (1), tapering is different for everyone & until one experiences how it affects them unfortunately there is truly no way to predict this.

1 week after stopping the cyclosporine, my transfusion & GCSF requirements started decreasing again as my counts started increasing, rather than decreasing as I feared. For me, it's possible the cyclosporine may have been holding my red cells, white cells & platelets at the low levels, which apparently can happen for some. Although I should mention my system tends to react differently to things than the majority of AA patients & this is why I mention it is different for everyone. Truly we won't know for sure if this improvement would have continued because of my impending scheduled transplant, which I had already delayed 3 months, hoping for improvement.

(1) I only mention my Dr's extensive experience so when I list drug levels, doses, share what she tells me... you'll know this is from a Dr who has treated AA patients for more than 20 years, has been on the AA/MDS advisory board for many years, has presented teleconferences for the AA/MDS foundation...BUT this said, everyone reading this has a history different than mine, Dr's with different patient experience & philosophies... & should NOT rely on my info for any medical decisions.

(To limit the length of this reply, I'll include more detail in a thread soon when I talk about my transplant & why I decided to proceed with the transplant instead of waiting several more months to see the true impact after stopping the cyclosporine)

Best of luck!

Sent via my smartphone, pls excuse typos.

[dfantle]

Hi, sorry for the confusion. 2 delays. The first was me putting off the transplant as long as I could in case my body all of a sudden decided to let the ATG work. Although I said I delayed it 3 months. Truly I delayed it for 6 months from when it was recommended & I authorized the search. I was fortunate the search team at my clinic found me a number of 10/10 matches, one in particular hit all the right marks for me: his young age (20), 10/10, same blood type, and also CMV negative like I was. For an unrelated donor this was considered a perfect match.

There is always a risk of delaying transplant because of susceptibility to infection. I had 3 small skin infections over the summer in the same area, which impacted my counts. These were isolated and never showed up in my blood cultures but started 3 months after the ATG. Following the 1st, my Dr suggested we may need to start a donor search so set things in motion to allow this search to happen quickly should we need to. The 2nd infection followed the 1st by 4 weeks and my Dr. told me it was time to start the search. If I had had no infections following the ATG she would have waited longer to confirm if the ATG had worked, and if not maybe done a 2nd ATG. However the infections basically proved my marrow wasn't strong enough to withstand them. White cell & neutrophils would fall very low, instead of rising to fight the infection as they were supposed to. The antibiotics impacted my counts and the GCSF shots stopped producing much while I was on antibiotics...
I authorized the search but was still hopeful that once off the antibiotics my blood counts would again rise. They started to once again end August but then a 3rd infection hit end Sept requiring an extra week on antibiotics which finally cleared the pesky skin infection. However it took a full month before my counts recovered to their pre ATG Severe AA levels. if I had any additional infections I'd risk becoming resistant to the antibiotics.

It was after this 3rd infection it became clear to me I needed the transplant, much to the relief of my Dr.

My 2nd delay was because once I authorized the transplant, they could have done it in early November. However, I really wanted to wait until end December to allow our 2 children who are college to finish their final exams without the distraction of my having the transplant. Fortunately I was able to stay healthy prior to transplant so the wait was OK, but it was risky. My team scheduled the transplant to occur January 7, but due delays in insurance company approvals due to the holidays, it was delayed until Jan 28. I had gone off the cyclosporine early December, anticipating the January 7 date, now I would have to be off it longer. It made me very nervous because I thought my counts might drop once I was off the cyclosporine, but they rose instead.

So it became a head game. I was nearing the end of the 6 month hold for my perfect donor. My team had already changed the date once due to insurance delays and my donor’s agency doesn’t take kindly to continual date changes. Was it worth postponing the transplant again, and risk the up and down counts I had for over 1-1/2 years. With my history the past 23 years of lowish counts not needing treatment, and the past 1-1/2 years when we had several glimmers of hope when it looked like things started improving, but then again crashed, the reality was this would likely have happened again for me so I decided to continue to transplant. I was ready!

Also an added bonus with the donor transplant is several leading Aplastic Anemia experts and Amyloidosis experts are certain that with the new immune system I now have, this will also likely cure the Amyloidosis which was my initial diagnosis. To date Amyloidosis has not been curable. So this was another reason to continue with the transplant. Only time will tell us for sure though.

Originally Posted by LoveRapheal1

Yes but I am a bit confused. You mentioned that you stopped the cyclosporine and your counts increased as a result. You also mentioned that you have decided to postpone the transplant 3 months.
Is this because your counts have increased and you want to see if they stabilize within the next few months? I would like to hear what has happened as a result of this decision. Another member on the forum mentioned that she threw her cyclosporine pills away and her counts increased. I would not risk that but maybe this can happen or just happen temporarily depending on the individual.