platlets continue to trend down

[JEZ]

After successful treatment for AA with horse serum and Csa for two years, I developed kidney toxicity. I came off of CsA and am now taking generic Imuran, 150 mg per day. My platelets on CsA reached a high of 168,00. Since coming off of the CsA my kidney function thankfully recovered BUT my platelets have trended down: (May) 148K, (June) 133K, (July 16th) 88K, (July 23rd) 80K, (August) 80K, (October) 71K.....My doctor says if I go down to <60K she will put me on another drug (sp) tachrilamus but says it can also be toxic to the kidneys. I wonder if anyone know of alternative drugs to Csa??? If I completely relapse I am concerned that the rabbit ATG seems so ineffective (from reading posts on the forums) and I am 59 1/2 years old and not a great candidate for BMT... By the way, my RBC and Hg as well as WBC seem to be doing fine. When first dx's my Hg etc was awful.

[Laura]

I was switched from CSA to Prograf after my first round of ATG. I experienced a lot less side effects from them. I was told that Prograf is better tolerated by people than CSA. (So why don't we just use Prograf first?) Anyhow, it is worth a try. Are you drinking enough when you are on the medications to protect your kidneys?

Laura

[JEZ]

Originally Posted by Laura

I was switched from CSA to Prograf after my first round of ATG. I experienced a lot less side effects from them. I was told that Prograf is better tolerated by people than CSA. (So why don't we just use Prograf first?) Anyhow, it is worth a try. Are you drinking enough when you are on the medications to protect your kidneys?

Laura

No, I realize now that I was not real good about hydrating at that time. If I go back on something similar, I plan to be alot more cognizant about the need to hydrate. I have heard of Prograf... did your counts go back up to a normal level?

[Laura]

I did not have the same scenario as you in trying the Prograf. I initially started with just CSA to try to bring my counts up after relapse. It didn't work so I had ATG with CSA. My counts initially came up nicely but then they dropped really low really fast again so I was switched to Prograf to see if that would work to bring them up. It didn't, so I did ATG again (horse both times) using Prograf. I have never been back on CSA. Could you do horse again instead of rabbit?

Laura

[JEZ]

Originally Posted by Laura

I did not have the same scenario as you in trying the Prograf. I initially started with just CSA to try to bring my counts up after relapse. It didn't work so I had ATG with CSA. My counts initially came up nicely but then they dropped really low really fast again so I was switched to Prograf to see if that would work to bring them up. It didn't, so I did ATG again (horse both times) using Prograf. I have never been back on CSA. Could you do horse again instead of rabbit?

Laura

I think it is one of my options. Last time I did horse I had serum sickness a few days after discharge and was readmitted for massive IVs of steroids which got rid of it. I had to go home on 200mg prednisone and gradually taper down before my Dr. started CsA. The large dose of steroids and weaning from them was a nightmare but other than some residual muscle weakness it seems like ages ago and just a bad dream. But I do think it is an option.

[Laura]

Best of luck. I hope you don't have to go down that road but if you do, I hope it works for you. Maybe they can just automatically start you on steroids right away this time to prevent serum sickness?

Laura

[Vera W]

Prograf is the generic tacharilmus. They are both expensive our pharmacist gives me generic when available. My kidneys are doing fine. I think it is a lot easier on you than CSA, they could keep a close eye on it and go with another plan if it doesn't work, it could be just fine.I know this stuff is so nerve racking! I don't know about you guys but I am so thirsty from all the meds that I have to drink lots of water. Jez I can't believe that you were on 200 mg of predisone, I thought 100 was horrible. Now I am down to 10 and I am seeing a little more rash and it worries me. Laura the ANC thing with you makes me crazy. I have been racking my brain to figure it out. Hang in there guys. I am using different muscles to compensate for my muscle weakness and I hurt all over. Coming off these drugs has been hard!

[Beryl]

Hi Vera,
Are you using any alternative treatments to help with the muscle pain- accupunture or vitamins?
How are you feeling??
Thanks,
Beryl

[JEZ]

Got labs again today... although the labs said platelets were 67K (last labs 5 wks. ago were 71K) which would be continued down trend, my doctor did a manual count of a smear and said the actual count is more like 81K. Last time she also did a manual count and it was on target with the machine labs at 71K. She said my retic. count and all others like RBC, WBC, neutrophils, Hg, Hct etc were all normal so my marrow is working. She wonders if the Imuran itself is causing lower platelet counts and may decrease my dose next time. I want to be happy but it seems she did that manual count so I wouldn't worry.. does anyone else know anything about accuracy of manual counts vs. machine counts on labs??? I wish my platelets would go back up to normal like they were at the beginning of the year before I had to stop Csa.

JEZ

[bchenaille]

JEZ:

You should definitely start lining up your options in the event a retreat is going to happen. I have been in contact with several patients who have tried their 1st round of ATG, then went to Johns Hopkins in Baltimore, MD for their HyCy treatments. They are all doing GREAT with all counts in the normal. It may take a bit longer because of your first round of ATG, but you also need to get aggressive about kicking your AA before you have to start playing around with a BMT.

Contact Dr. Robert Brodsky at JHH.

[Hopeful]

Hi Jez,

My doctors would consider a drop of 4k as in the noise. In other words, they would say my counts were stagnant, not falling.

The argument that my doctors have used on me is that if my counts were 300k, I wouldn't even blink at a 4k rise or fall, but when my counts are low, it *seems* so much more significant.

Just trying to be hopeful for you!

-Hopeful

[Gloria J]

I agree with Hopeful - going up or down 4K for platelets, when your numbers are in the 70s, is not significant- unless you were down in the low teens.

If your platelet levels were going up and down by 40K, that would have more significance. I'm consistently in the 30s, and I can function and I feel well (although I wouldn't mind readings in the 70s!!)

From what I understand, manual counts are more accurate - but only at that moment. You could have them counted again later in the day and get a different count. I think you can relax with these counts - sounds to me your marrow is doing just fine!