Aplastic Anemia Relapse

[alyse]

Hi:

Has anyone relapsed from AA. If so, what treatment did you follow the original ATG with?

I had amazing response to ATG in terms of my counts (although terrible serum sickness, fungus in my esophagus and felt lousy for months). I was on cyclosporine for 13 months and tolerated it pretty well. About 12 weeks after my doctor took me off cyclosporine, my platelets went from 160,000 to 20,000. Yesterday they were 5 and I have been transfusion dependent (platelets and now red) for four weeks.

I am considering another round of ATG vs. the Campath trial at NIH. Since I did so well with ATG (but suffered so much afterward), I am not sure what is the best route to take. I have heard that Campath doesn't have the many side effects of ATG and response rates to date seem about the same. But there is no long term data. My concern: what if Campath doesn't work for me? Then what?????

Are there any relapse patients out there who can comment on a second round of ATG or on Campath?

Many thanks.

Alyse

[Lisa Z]

Hi Alysse-

I hope you get some responses to your post. Let me know what decision you ultimately make.

Lisa

[Neil Cuadra]

Alyse,

You might want to read Andrea Pecor's Personal Profile. She's one of a number of AA patients who have had ATG more than once. Some patients who received horse ATG switched to rabbit ATG, or vice versa, looking for more benefit, while some used the same type because it worked before.

When Andrea had her ATG there weren't any other treatment options. It may be hard for you and your doctors to decide between treatment choices but it's actually a benefit to have a choice.

[Hopeful]

Hi Alyse,

At what point did you start tapering your Cyclosporine? How long were you tapering and at what rate? Also, how old are you?

One of my doctor theorizes that the marrow must be retrained to keep the bad cells in check and that longer term cyclosporine use helps facilitate this.

Of course, this doesn't explain why some people can achieve a good durable response with ATG and no Cyclosporine at all...

[Lisa V]

Alyse, from what I've read it seems that the majority of relapses do occur when the cyclo is tapered. That was the case with my husband, and there seems to be a growing trend towards a much longer, slower taper, or in some cases no taper at all. Ken is still on a maintenance dose of cyclo 4 years after his second ATG, and as long as he can keep his creatinine levels in check we have no plans for another taper.

His doctor felt that since he had responded reasonably well to his first round of horse serum, there was no reason to switch to rabbit or any other form of treatment. Better to keep those in reserve in case the horse stopped working. The only change was to double the length of his infusions the second time around (10 days, as opposed to 5 the first time), as he had been advised that the odds of success were improved if the number of days was increased with each successive course of treatment. We also had the advantage of already having tinkered with his other meds and knowing how he would likely respond to them, so we managed to avoid some of the problems he'd had with prednisone and cyclo the first time around.

He has shown a good response to the second round, and although slow, his counts continue to creep up gradually even now. He has reached much higher levels over time than he managed to before he relapsed, and I really feel the continued cyclo is the reason. Of course we know there may be an eventual trade-off for that in terms of his increased susceptibility to other illnesses, but at this point the benefits certainly seem to outweigh the risks.

Hope this helps,

[GretchenMW]

Alyse,
I was on Cyclosporine for a little over two years, most of that time being tapered very very slowly. I remember trying to take too large of a jump one month and the platelets took a nose dive, so we resumed the snail's pace...but in the end it paid off.

Keep us posted and god bless.

[KarenL]

Hi Alyse:

I relapsed in July as well. I had horse serum ATG in May of 2007. I began my taper off of cyclosporine in January of 2010. My doctor was advised to do it over one year; nice and slow. Unfortunately my taper went too fast and I was out of range by the end of April. Darn. Anyway my platelets dropped first and then my reds. My whites are slowly dropping too. To answer your question about ATG my doctor told me if and when the time comes to do the rabbit serum because you can have a reaction to horse serum if you've had it in the past. I would check on that with your doctor. We increased my cyclosporine with no results but now we are trying a month of Prednisone. I heard from NIH that it can take 1 to 3 months for results. My best to you; I will be thinking of you and check to see how you are doing.

[Hopeful]

Hi Karen,

I'm trying to better understand what may cause some people to relapse. Were you totally off cyclosporine when the relapse happened? Did you begin your taper only after reaching normal counts? Did you initially present with very low platelets?

Thanks for sharing and I hope you have a good response again.

[KarenL]

Hi Alyse:

I began the taper in January of this year. My platelet count reached 160,000 at that time and whites were normal. My reds always needed a series of Procrit shots periodically (about every 3 months) to perk them up. I found out from Dr. Paquette's webinar on the AA website that he recommends 25mg reduction every three months unless there is a drop in counts. That should have taken me a year and a half. I was down to 50 mg/2 day in April and that put me out of range of effectiveness. Dr. Young at NIH said that's like not taking any drug at that point. My platelets dropped first, then reds, and finally whites. So now I take 125 mg/2day and Prednisone. But sadly I have had to have 9 platelet transfusions starting on July 15 and 2 units of reds. No response yet. Did I answer your questions? Sorry I didn't check back sooner to respond to you. How are you doing?

Karen

[paulaespada]

Alyse


As you can read in my posts, my husband relapsed 4 months after finishing cyclosporine.

In June he had ATG, 2nd course, just 2 years after the first.
He is recovering.

Both times it was rabbitt because in Portugal horse serum is not used.

I hope everything will work fine with you!

[Candy S]

In response to HOPEFUL.....

My daughter has had two rounds of IST (no response the first time, we started with Rabbit). She had her second round at NIH with Dr. Young (used Horse ATG this time). She has, what they consider a partial response. She has been transfusion free since March of 2010. Dr. Young (who apparently wrote the book on AA and conducts all the trials) put Mia (my daughter) on a fast taper. She finished her Cyclosporine on September 7, 2010. Her numbers have been holding and even climbing a little bit.

However, I just read an article in the AA&MDSIF Insider Newsletter where Dr. Young summarized the newest research findings on AA and its treatment. (Published in the January 2010 edition of Biology of Blood and Marrow Transplantation). "There are several late complications that can occur after IST, Relapse occurs in up to 30% to 35% of patients when CsA is withdrawn at six months. A more prolonged course of Csa with a later slow tapering of the drug reduces the relapse risk to around 13% to 16%. About a third of patients are CsA-dependent and require a small dose long term."

Interesting that he wrote the article in January and in April advised us to use a very fast taper. All is going well for now....so we will keep our fingers crossed. The less drugs my daughter is on, the better!!!!

[Lisa V]

Originally Posted by Candy S

Interesting that he wrote the article in January and in April advised us to use a very fast taper.

I agree that is odd, Candy. Have you asked him about that? Since the taper is kind of a hot topic among AAers, I imagine many of us would be interested in hearing his response.

[Candy S]

Mia (17 year old girl) finished her second round of IST in mid October. Her CsA went up and down all along, but she was usually taking anywhere from 275 mg. twice a day to 325 mg. twice a day.

On 4/26/10 she was at 225 mg. twice a day -- the new (fast reduction) dosing schedule began. She was reduced 25 mg. every two weeks. She finished the CsA on 9/6/2010.

Hope that helps answer your question. Time will tell how it all works out.

Candy

[Candy S]

We go to NIH in mid-October for another bone marrow biopsy for Mia. I intend to bring the Newsletter and ask him specifically about it.

Hey, I'm all for no drugs...and if she starts to falter we can put the drug back on...but he was the one who said to me "I was the one who wrote the taper schedule in the first place..." because UCLA, Standford, and all my other AA friends out there going by the book that NIH wrote were appalled that we were doing it so fast. UCLA (where Mia gets treated/overseen on a regular basis) was very much opposed to doing it....we had a few tense appointments, but I DO feel very confident in the hands of the doctors at NIH.

Besides, if all these huge teaching hospitals don't have the funds to document what their AA patients are doing out there -- how are we ever going to find some common denominators? Most of these facilities only have one or two AA patients a year!

Candy

[Hopeful]

Thank you for your replies. I think the report on slow tapering of cyclosporine was based on this study done with pediatric patients in Europe by A. Bacigalupo, who is also a leader in Aplastic Anemia.

http://onlinelibrary.wiley.com/doi/1...7.06903.x/full

I am also curious why Dr. Young recommended a fast taper. Maybe because your daughter is a transplant candidate???

[Lisa V]

Candy, I'm all for no drugs too, but once my husband's counts started crashing (following a too fast taper), resuming the cyclosporine alone did nothing to turn it around. He had to do a second ATG in order to get the process going again. All things considered, that may have been a good thing, as he has had a better response this time, but I feel like we're all just learning as we go along, and if someone else can benefit from our experience, so much the better.