response time from ATG/Cyclosporine

[SAA Mom]

How long did it take to see a rise in your CBC after ATG infusions/Cyclosporine treatments?

[Plsticmn]

SAA Mom,

Sorry to hear your son and family are going through this. I know how difficult it can be.

I was diagnosed in September of 2011. The AtG and cyclosporine treatments started in early October that year. I did not see any blood growth till January 2012. I was told that my situation was unique given that most patients have gradual blood growth starting within a couple months.

I was fortunate to make full recovery to this point. It took about a year to get the residual drugs out of my system. I now feel about 100% and my blood counts are normal. I am 55 and back to playing competitive tennis.

Best of luck to your family. Please let me know if you have additional questions.

Best

[SAA Mom]

Hi Plsticmn,
Thank you for your answer. My son was dx with SAA in June. He had 1 dose of AtG x 4 days. How many doses of AtG did you receive? Are you on Cyslosporine? If so, where do they try to keep your levels? My son was on 300mg every AM and 200mg every PM. He got horrible headaches, acne all over his body and some neuropathy within weeks of this dose. His AM blood level was getting to be approx 260 when the doctor decreased his dose to 200 2x/day due to the side effects.

[Plsticmn]

SAA Mom,

As I recall, the Atg dosage/time was similar. I was on the same dosage give or take as your son of the cyclosporine for 6 months.

My side effects were severe but different; severe anxiety, night sweats , hot flashes, numbness in my hands, extreme fatigue.

I have been an athlete all my life. However, nothing was more taxing physically, mentally, and emotionally than going through the cyclosporine therapy. I woke up every morning knowing that I would feel worse and worse as the day wore on. It was very dark period for me even though I had always been an upbeat positive guy.

What got me through was family, faith, and friends. I never stopped believing I would get better no matter how bad I felt.

The best advice I can give you is stay patient, stay strong, and stay positive.
Never, ever stop believing. I really believe that attitude will make a huge difference.

Let me know if I can be of further assistance.

Best

[SAA Mom]

I am glad to hear that the meds worked well for you. I pray that we have a similar response!

[ssdavi71416]

SAA Mom

My treatment H-ATG and cyclosporine took about 4 months to start working. At That point my numbers started improving slowly. You can see from my numbers below that I had SAA. By January I was at almost normal levels.I am still on cyclosporine atthis point.

[SAA Mom]

Thank you for your reply. We are a little over 1 month from AtG. It is great to hear how the tx worked for others- offers peace of mind.

[Plsticmn]

Originally Posted by ssdavi71416

SAA Mom

My treatment H-ATG and cyclosporine took about 4 months to start working. At That point my numbers started improving slowly. You can see from my numbers below that I had SAA. By January I was at almost normal levels.I am still on cyclosporine atthis point.

Scott,

Interesting that it took us about the same time for the treatment to work (4 months). I was 53 at the time. I wonder if age is a factor.

Wait till you get off cyclosporine. Food will taste amazing again! I hope good things continue for you.

Dave

[Karenish]

Mine took 10months!!!

[SAA Mom]

Karenish,
Did it take 10 months to reach normal counts or did it take 10 months for your counts to come up at all?

[BobbyJD]

SAA Mom, some people see a response within weeks and some it may take several months to maybe even a year. As long as the counts are not dropping, keep faith. Once you see a response and rise in counts you should know that a slow taper off Cyclosporine is important, so weigh the good and bad with side effects.

[SAA Mom]

We went for a 2nd opinion.
The director of that transplant unit feels my son should have a MUD transplant now since he has a clone of PNH. The Dr. said any clone is not a good thing considering he is so young, will probably grow at some time in his life. Then possibly wont be as healthy as he is now. Best outcomes happen up to age 20. Since my son is 21 that is him.

Our original doc responded : we don't have a sib match and gvh is always a huge possibility. My sons PNH is under 20%. If his counts come up with ATG / Cyclosporine, Put BMT off as long as we can. My son had ATG in June. No response. The original Dr feels if no response at all, get ready for BMT starting in 10/2013.

On our way out of the office I ran into a lady that I met when we were inpatient. Her husband has Leukemia and had a MUD transplant with a 10/10 donar. Her husband is on hospice dying of grade 4 gvh. She commented " 10/10 HLA means absolutely nothing".

At times I feel we will make it thru a MUD BMT, we can do it. At other times I think wait until they have improved the process and can identify better matches or decrease the gvh. At other times I am just terrified! I hate this. My son was perfectly healthy and felt great the day he had routine blood work and got the new. One thing I know for sure I hate this.

[Hopeful]

Hi SAA Mom,

I can understand your exasperation in trying to decide the best possible treatment for your son.

I just thought I would throw in my two cents...Don't rush to transplant if you don't have to. If your son gets his AA under control and his PNH is stable or improving, why not wait for more advances in medicine before taking this gamble. I was 42 years old at the time of my diagnosis. 40 is another magical number for transplant statistics. I remember agonizing over the transplant decision because I had a sibling match and was only getting older. I'm so glad that I chose not to, even though I am not "cured". I'm not sure where I'd be today if I had gone the other route.

It's been my experience that transplant doctors are biased towards transplants. If you are more confused than ever, consult with another doctor that specializes in PNH (these are even rarer than MDS/AA doctors!)

Here is a recent article that describes how PNH clone size can decrease after IST:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2895030/

I'd also recommending reviewing the presentations on PNH and AA at the AA&MDSIF on-line learning center, if you haven't already done so. They usually are excellent, and knowledge is power!

https://live.blueskybroadcast.com/bs...?Client=680927

Hopefully you will see that rise in your son's counts soon!

[NLJabbari]

SAA Mom, today there was a live Webinar presention on the topic of PNH on the AAMDS website. It was very informative to say the least.

After the presentation someone asked the Dr. about patients that present with AA and PNH. The doctor said something to the effect that might be an indicator of a good response to IST. He also mentioned that for some people the PNH clone actually disappears, but they're not to sure as to why yet.

Please do go check the Webinar. You might find answers to your questions.

Take Care

[StephM]

Hi! I reopen this thread to get your opinion about early responses to ATG/cyclosporin. My brother finished ATG about 3 weeks ago and is out of hospital today with a light dosage of cyclosporin.
His hemoglobin has been stable since his last transfusion one week and a half ago and has even rised a little. He won't need the next tranfusion.
Platelets are still low. Would you call that a response?
I read several times that early response was an indicator of future relapse. The longer it takes for the counts to rise, the better.
Are there any early responders on the forum who could contradict that?

[Hopeful]

Hi Steph,

I think you are mixing up things a little. Seeing some kind of response (like rising HGB) within the first 3 months is a positive sign that your brother will respond to the treatment.

The groups that tends to have a higher incidence of relapse are those that have a complete response very quickly. They tend to be taken off cyclosporine very early (sometimes in less than 6 months), which may contribute to their higher relapse rate (in my opinion).

[StephM]

Thanks for your quick answer Hopeful! I may be mixing up things I admit
But I've been reading so much lately about things that escape me. I guess I'm just scared. I know the only thing to do is to wait and see what happens in the long term. But I can't help trying to interprete every single sign.
Thanks. Your reply -and your signature- conveys the optimism I need...

[KMac]

StephM and Hopeful,

If memory serves me, I think you are both correct. This seems to be such an unpredictable disease, you can find studies on response time vs relapse that indicate both.

And same thing with response times/relapse (or no relapse) of folks I know personally in my SAA support group here in Denver.

I responded so slowly StephM. I wasn't where your brother was at week three, until after month 4. My hemoglobin didn't even reach 9 until month 6. Those were long tired months! I was so worried too. But now a month 20, I'm doing pretty well as per my counts below, I work full time, exercise, and have my life back. But I can't tell you how much I envied the early responders in those first frightening months!

Then I know a patient who responded very quickly like your brother, and she is doing just great 11 months post ATG.

I do recall that NIH studies correlate a fast response to good prognosis.

[Hopeful]

Hi Steph,

Just following up...

Is your brother still on the very low dose of cyclosporine?
Are the doctors monitoring his trough?
Has his kidney functionality improved? If so, do the doctors plan to increase his cyclosporine or are they monitoring his trough level to make adjustments?
Also, was he tested for PNH?

[StephM]

Hi! His cyclosporin dosage was diminished after they found lot of blood in his urine. Now that they have fixed this, they increased his cyclosporin a little (2x 1OOmg a day).
On the report they gave him when he left hospital yesterday, they say they did not find any clones (but I don't know if it was in the BMB before ATG or if they retested him after) His next appointment is on Friday for a platelet transfusion and in November with the hematologist. I'll try to ask about that.

As for his "trough", I'll have to do some research in a dictionary. I thought it was the place where cattle go to drink ((I'm French and I'm having a hard time trying to understand all those medical terms...)

KMac: Thank you. I hope you're right.
Here's the article I read:http://onlinelibrary.wiley.com/doi/1...181.x/abstract

[Hopeful]

Hi StephM,

That is good that he doesn't have PNH. PNH is not something that you need to check often. I was just curious if they did check it, since his urine was so dark.

Your English is so good that I forgot you are French! The trough measurement refers to the lowest level of cyclosporine in his body. Cyclosporine generally follows a bell shaped curve after ingestion. The peak levels are ~2 hours after taking it. The lowest levels are 10-12 hours later, or just before taking the next dose. Doctors usually check this lowest level (or trough) to make sure that a patient is not on too high or low a dose of cyclosporine. This is all very controversial, as some people metabolize the drug very quickly. It would be interesting to see what level your brother is at because his dose is so low. If the cyclosporine "trough" reading comes back really low, you may have an argument to increase his dosage. Typically, doctors like to see it around 200. If it is above 400, he is taking to much of the drug. If it is below 50, he may not be getting enough. Anything in between is another data point, in my opinion.

[Karenish]

Originally Posted by SAA Mom

Karenish,
Did it take 10 months to reach normal counts or did it take 10 months for your counts to come up at all?

Sorry, too busy living my life to the full to visit here that often thank god. took 10 months until any change in my counts, plates hovered around 20, then went to something like 25, next week 30, and have been slowly climbing for 3 years, last draw and plates have gone to 95 - all other counts normal, so i was very slow to respond, I had rabbit. I am one of the lucky ones, i had the whole thing quite easy compared to others, not much serum sickness, not too many side effects from cyclo, starting incredibly slow taper after christmas, so fingers crossed.
By the way, my doc reckons that because I was so slow to respond, means that the marrow is more than likely recovering much better, as in slowly slowly catch the monkey!! he said he will taper real slow so as not to shock the system and the theory is that the immune system and the marrow will slowly get used to each other again and all will be well. I hope that is true, its been a long 3 years! Remember research is on very little numbers, not many of us get this, although in the UK figures have doubled within 10 years and my hospital alone gets one every 6 months!!
I think this disease will soon get noticed as more and more will get it. I blame stress, and pesticides and drugs in our food. I now live organic, drink plenty of water, perfume on clothes and use Arbonne beauty products. Treating my immune system as I would a new born baby xx

[Relentless Against SAA]

Originally Posted by Karenish

took 10 months until any change in my counts, plates hovered around 20, then went to something like 25, next week 30, and have been slowly climbing for 3 years,

Karenish,
How long did it take for your RBC and Neutrophils to respond?
Thanks,

[Karenish]

Neuts came back fairly quickly but they were at .95 at diagnosis, they jumped straight to this after ATG, they slowly climbed too, and are now around 3 - Red blood, again took about 10 months, although I never really got lower than 7 in the early days as they would transfuse me, but the 10 month, it went to 10.5 - then from then a slow but steady climb, now currently 11.8 and have been around this through virus's etc never dropping below 11.5.

[StephM]

You're doing really great Karenish! I also read that the slower it takes for the counts to raise the better.
Have you been on cyclosporin for 3 years? What is your current dosage? Did you have any side effects?
My brother is still at a very low dosage because of side effects. At first, it was blood in his urine and now it's joint pain- especially in the knees and sometimes the elbows- that make it difficult for him to walk or to carry anything. He has 125 mg twice a day.
He is young and he was very sporty. He worked as a gardener. Now he can barely climb the stairs
We have an appointment with the hematologist soon and I'll ask him if there's another drug he can take. I saw on this site that some of you were taking tacrolimus.