my counts are up!

[misscakes]

i havent taken the cyclosporine in 2 weeks and this week my counts are the highest they've been in a year and a half! not getting too excited, i know these things fluctuate. but you have to celebrate the little things too my platelets are up to 54!!

[mausmish]

Great news! Yes, it is important to celebrate the small victories, too.

[Lori Patrick]

Kimberly, Congratulations! Good "little things" lead to more good things! Blessings, Lori

[mscrzy1]

Congrats! Yes, you should celebrate all the little things!

[Marlene]

Great news!!!!! A little celebration is in order.

[julestheo]

Great News! Every positive is to be celebrated!!
Keep going and keeping positive

[Snuuze]

Wow! That's tremendous to have such results so soon! I had ATG last May, am still on cyclosporine and other stuff, and just in the past couple of months have things begun to turn the corner.

[Gosia.P]

Congrats!!! Way to go... And yes..We must CELEBRATE every little victory

[dfantle]

Congratulations! though I'm surprised you're off cyclosporine so quickly. I always heard that AA patients should be on this for a minimum of 6 months following the ATG. Is your Dr following a different protocol? I'm curious because I just received my Horse ATG last week (last day/day 4 was yesterday) and have been told I'll be taking the cyclosporine for at least 6 months. My brand is Gengraf. Sometimes I'm getting a bit of a headache with it. No other symptoms yet, but it just my 5th day on it.

Sent from my cell phone
Best, Dena

[Lisa V]

I'm surprised you are off it so soon too. Did you do a slow taper? The increased counts are great news, just be sure to keep a close eye on them during this crucial time.

[misscakes]

My doctor told me I would be on the cyclosporine for six months but couldnt tell me why I supposed to take it. The side effects were making my quality of life horrible so I just woke up one morning and said the heck with it and havent taken them since. While I was on it my numbers stayed in the toilet and now two weeks without it they've jumped so I'm gonna continue to not take it.

[Karenish]

Be very very careful stopping meds before your marrow is ready. The cyclosporine puts those naughty T cells to sleep if any are left after the ATG, to stop taking these meds you are potentially letting them wake up to wreak more havoc on your marrow before it has had time to re boot itself. Your doc should have explained this to you! I have been on cyclo for a year now, its not a walk in the park, a few tremors, cramps, high bp, overactive gum growth, but my counts are improving slowly. I will not stop taking them until doc says, and then as per protocol I think it will be what they call a slow taper.
Please be careful xxxx

[Lisa V]

Uh oh, does your doctor know you've stopped cold turkey? I agree with Karenish, not a good idea. I'm sure you feel better and may even be seeing a little bump in your counts for the moment, but it could come around to bite you in the backside down the road. I know this is not what you want to hear, but I've seen it happen too many times with others, and they end up paying dearly for it. ALWAYS include your doctor in any treatment decisions!

[triumphe64]

Originally Posted by misscakes

My doctor told me I would be on the cyclosporine for six months but couldnt tell me why I supposed to take it. The side effects were making my quality of life horrible so I just woke up one morning and said the heck with it and havent taken them since. While I was on it my numbers stayed in the toilet and now two weeks without it they've jumped so I'm gonna continue to not take it.

What's worse for your quality of life, AA or cyclosporine side effects?

[misscakes]

yes, my doctor does know.

and as far as what's worse, i never would've known i had aa if it werent for routine testing during my pregnancy.

[Karenish]

What concerns me misscakes is that your doctor was unable to tell you why you had to take the cyclosporine...if you do an internet search you will see that it is the treatment protocol. However, maybe, you had AA because of the pregnancy and the protocol is slightly different? You could be very lucky and it was just one of those things....it happens.....some people get it once, it goes and never comes back....for some it can come back many years later.....for some it comes back sooner. But I do know that you are less likely to relapse quickly if you are on the cyclosporine. I agree its a poo bag of a drug, but like a previous poster has said...AA or side affects from drug.....for me no brainer, the first is life threatening the other is actually keeping me alive.
Just be very very sure you have done the right thing and I truly truly hope that your counts do indeed continue to soar and that you go into long term remission....that is what we all wish for. good luck xx

[misscakes]

and my counts are continuing to go up! platelets are at 56! hb is 10.3! seems like i'm starting a slow climb

[dfantle]

That's wonderful news.

Best

[glitterandlace]

Originally Posted by triumphe64

What's worse for your quality of life, AA or cyclosporine side effects?

Does she have to pick? I say it's about a tie.

[glitterandlace]

Originally Posted by misscakes

and my counts are continuing to go up! platelets are at 56! hb is 10.3! seems like i'm starting a slow climb

I hear some women get AA temporarily during pregnancy. Congrats, wish the best for you. =-)

[triumphe64]

Originally Posted by glitterandlace

Does she have to pick? I say it's about a tie.

I hope that you registered for the AAMDS patient conference in Los Angeles this week Saturday. You would find it helpful.

[JWT]

I was recently treated with ATG and am taking Cyclosporine for AA and am wondering how long it typically takes to see increased blood & platelet counts with this type of treatment. It seems that I am being transfused with either platelets or blood on a weekly basis due to low counts.

[Karenish]

The general consensus is that your blood counts should start to return to normal around month 6, however, mine did not, so consultant did another biopsy and saw that the marrow looked as tho it was improving but very slightly, then in month 10 things took a turn for the better and counts started to climb. Now currently at a level which is comfortable and I am transfusion free....its been 16 months and I have still a way to go. We are exploring whether a second dose would improve, or we carry on the wait and see road.
What I would say is tho, try not to get obsessed with your counts, even if you were 100% healthy they would fluctuate on a daily basis - we just notice it more because they are low. Plates drop when you have an infection - try to be patient. Best of luck xx