A very slow but very good recovery from SAA.

[egreg]

Hi everyone,

I was wondering if anyone can share their experiences with stopping cyclo. I spent 6 months on cyclo following ATG treatment for VSAA. My counts rose and I am now in "partial remission." Anyone experience a drop in counts at first then a subsequent rise?

Thanks.

[Rentzi]

Hello All. I have a few questions for you. First of all, we just returned from Rochester and there they lowered his platelet transfusion threshold to 10 instead of 20 in order to lower the # of transfusions he receives. He still has not had red blood cells yet but the levels have fallen to 8.5 so I imagine that is on the horizon. His white cells have climbed to 2.1 this last Monday but down to 1.9 today. Today his nurse told him there were some nucleated red blood cells in his CBC. From what I have read online, that is a bad thing but in Aplastic Anemia is it bad? We are only 3 1/2 weeks out from ATG treatment. What are your thoughts on platelet transfusions and nucleated red blood cells? Thank you.

[Hopeful]

Hi Rentzi,

I'd be very cautious with that low a platelet transfusion level. As you know, he is at an increased risk of internal spontaneous bleeding. Perhaps a 15k transfusion level would be a better compromise?

I am not sure what nucleated RBCs signify but do know that RBC dysplasia is seen in Aplastic Anemia.

Best of luck!

[Marlene]

John's threshold was dropped to 8K. In the beginning, before treatment and for about one year out of treatment, 10K was his threshold. Then we decided to see what he was holding at and 8K was the magic number. Of course, all bets were off if he started to bleed.

It helped to know what his clotting times were. And they were good at 8K. Your doc can run some test to assess it. I also had him on vitamin K as well as old fashion gelatin (animal source). Gelatin contains clotting factors.

Our doctor once told us that they will go as low as 5K in Aplastic Anemia.

Hopeful's suggestion of a trial at 15K sounds like a reasonable approach and if he does well at 15K you can step it down again.

[curlygirl]

Rentzi, if you google Nucleated Red Blood cells it all looks bad, but here is a good explanation of why it is good if you are recovering from Aplastic Anemia. My son's doctor got very excited when she saw Nucleated red blood cells and a metamylocyte in his blood 6 weeks after ATG.: http://www.pathologystudent.com/?p=318

[KMac]

Yes, I had the same experience as CurlyGirl describes. As I began to recover post-ATG, I had several CBC's with nucleated red blood cells, and my doctor said the same thing - that while these are typically not good things to see in the blood as they indicate a blood disorder, in recovery from SAA they provide evidence that the marrow is working hard to start producing blood again - a good sign in our case.

[Rentzi]

OK, thank you so much for your replies about the nucleated rbc. Another question for you. His WBC made it up to 2.2 and has been going down by .1 every other day to 1.8 but his lymphocites have gone up a lot to 762. Am I correct in believing these are mature white cells and it would be nice to see more bands? Also, I am getting scared about this new enterovirus D68 as we have four kids in school. Any pointers from you would be great. How did you all cope with the "hanging on to every blood test result"? We are sad to see the fluctuations.

[Rentzi]

I believe I meant neutrophils instead of lymphocites in my last post. It is the total count of segs and bands. This jumped from 348 on Monday to 702 yesterday, but WBC went down to 1.8

[Rentzi]

Rory had his first red blood cells this Monday. Gave him a bump to 8.5 on Wed and today it was 8.1. How long did you go between rbc tranfusions? His platelets remained at 30 from a transfusion on Wednesday. They were down to 8 and he had the red spots on his legs and in his mouth. WBC went up to 2.2 from 1.8 but neutrophils went down from 720 to 550. We are five weeks out from ATG and still on cyclosporine. Our town is having a benefit for our family this weekend and we will see many friends that we haven't for awhile. It should be a happy time and a bit difficult as its hard to be on this end. We are blessed. Have a great weekend.

[MtnGal]

Hi Rentzi,

Looking back, I was almost a month after ATG before I needed an RBC transfusion again (prior to ATG, however, I was having transfusions every 4 or 5 days!).

I know you really want to see a quick improvement in those blood counts, but unfortunately, it's going to take time. And trust me, you don't want too rapid of an improvement because studies have shown that "rapid responders" are more likely to relapse. (Although the jury is still out on how much my relapse was caused by my rapid response and fast cyclosporine wean or the undiagnosed thymoma that's coming out in November.)

Try not to get too fixated on the numbers, although I know that's all you have to go on at this point! In the early days, every time I'd have blood drawn, the doc would remind me, "This is just a snapshot of what your blood is doing today." In my experience, the numbers (especially WBCs and neutrophils) are going to bounce all over the place. What you want to see is a steady upward trend.

Thanks for keeping us posted on how your hubby is doing. Hang in there and be patient. It sounds like you have a lot of community support which is wonderful!

Joyce
DX VSAA 11/2012; Treated w/ ATG & CsA; Relapsed 1/2014; DX Thymoma, 8/2014.

[MsJeni]

I hope I am entering the information in the correct place.

I responded to the ATG surgery after nine months. There was no known cause for my illness. I was diagnosed in 2012. My hemoglobin was a 12 (highest ever) recently and my platelets were 90. I am concerned about the risk of cancer from these meds so I asked the doctor if I could wean from 100 mg to 50 mg. He said that I could and asked me to come in for CBCs within two weeks. I am now on 50mg. I read that you should only wean by 25 mg every three months and that a slow wean prevents relapse. I was originally on 250 mg. I do not remember when but the doctor started to wean me off slowly awhile back. What do you think? I was also wondering if we could be in touch via email. I also have skype (which does not require video calls if you are uncomfortable) but is a way to chat over the computer. It would be assuring to speak to someone who has survived this. I survived but not fully and now I fear getting my blood drawn tomorrow. I also do not mind if you call me and can give you my phone number via email. I can be reached at jennifersag@yahoo.com

[Hopeful]

Originally Posted by MsJeni

I hope I am entering the information in the correct place.

I responded to the ATG surgery after nine months. There was no known cause for my illness. I was diagnosed in 2012. My hemoglobin was a 12 (highest ever) recently and my platelets were 90. I am concerned about the risk of cancer from these meds so I asked the doctor if I could wean from 100 mg to 50 mg. He said that I could and asked me to come in for CBCs within two weeks. I am now on 50mg. I read that you should only wean by 25 mg every three months and that a slow wean prevents relapse. I was originally on 250 mg. I do not remember when but the doctor started to wean me off slowly awhile back. What do you think? I was also wondering if we could be in touch via email. I also have skype (which does not require video calls if you are uncomfortable) but is a way to chat over the computer. It would be assuring to speak to someone who has survived this. I survived but not fully and now I fear getting my blood drawn tomorrow. I also do not mind if you call me and can give you my phone number via email. I can be reached at jennifersag@yahoo.com

Hi MsJeni,

You may want to create a new thread for your questions so that more people can comment.

My first doctor was a big advocate of the slow wean. He thought that the dose should only be lowered by 25mg *if* the counts were stable for 3 months on the previous dose. If they were still rising (or worse falling) then the wean was stopped. This worked well for me until my insurance changed, and my new doctor wanted me off cyclosporine fast for reasons unknown. He weaned me off every month despite falling counts. Needless to say, I started to relapse. I left that doctor

My new doctor has multiple patients that have been on low dose cyclosporine for 13+ years. I have been on a low dose for 10 years now. Kidney transplant patients are on cyclosporine for life. So, although the prospect of being on a drug that can cause lymphoma is a little disturbing, it is better than the alternative for those of us that are cyclosporine dependent!

Be cautious about tapering if your counts are still rising. There are still gains to be made. Also don't be in a rush to taper completely off. The goal of the slow taper is to find the minimum dose by which you can maintain your blood levels. If you taper down too quickly, you won't know what that minimum dose was and may need to save things by either starting back on a high dose of cyclosporine or resorting to ATG.

Good luck! Be patient!