Quote:
Originally Posted by TASHMAC
The concern I have is that once you relapse that you are more predisposed to something much more sinister and/or if you do manage to respond to the cyclosporine that you will never actually be able to stop taking it.
|
I think that once you have AA, unless you have a successful transplant, you are always predisposed to something more sinister because the bad clone is still there. It is true that you may have to stay on cyclosporine indefinitely, but it may be at a very, very low dose.
Quote:
Originally Posted by TASHMAC
My doctors are still convinced that the relapse is due to the reduced cyclosporine, in my case I also stopped taking birth control in December and had dropped the cyclosporine to 100 in November and then it was dropped again to 75 in January. Research does show that birth control impacts cyclosporine so it is possible that the reduced cyclosporine combined with stopping the birth control is why I relapsed but it is difficult to say to what degree the birth control impacted the cyclosporine. I had hoped that my results would have stopped falling given we increased cyclosporine to 200mg about 2.5 weeks ago.
|
I have also read that birth control pills and cyclosporine interact and should not be taken together. It seems likely that stopping them both at the same time probably resulted in a larger decrease of the cyclosporine concentration in your system.
2.5 weeks on a higher dosage of cyclosporine is probably not enough time to see a reaction. The cold is not helping things either
It takes 2-3 months for it to build up in your system again. Unfortunately, it is unclear what the levels were before because of the birth control interaction. Did your doctor do trough or 2-hour cyclosporine (the peak) measurements?
Quote:
Originally Posted by TASHMAC
Did you respond well and quickly to the ATG? Did you have ATG a second time or have you simply stuck with trying the increased cyclosporine? If you simply increased cyclosporine how long did it take for you to show a response? You indicated that you wish you had had the bmb sooner as it was an immune attack - are you able to provide more detail in this regard? I have been suffering from a minor cold which has been on and off since early February and my 2 young children have had the same thing for the same period of time. I have just started to take antibiotics as we thought it might be worth a shot. I have not suffered any fevers.
|
I did not respond rapidly to ATG. I got off of transfusions fairly quickly, but my counts didn't really start rising for ~7 months and then they rose very slowly. I am a partial responder, as my platelets never quite reached a normal level.
I was on cyclosporine for ~2 years before I started tapering. My platelets were still slowing rising at this time, but I had a new doctor, and he thought they were high enough. I started a very slow ~2 year taper.
My platelets stopped rising but seemed to be holding for most of taper. When I got down to a very low dosage of cyclosporine, they started their slow and continuous fall. I was off cyclosporine for a little less than a year. My counts have slowly fallen the entire time at about the same rate that they were previously slowly rising.
My doctor tried to rescue things by restarting me on a very low dose of cyclosporine. He would not give my a BMB prior to restarting as he didn't think it would change anything in his treatment. My counts held for about a year but now are slowly falling again.
I finally had a BMB ~1 year after being back on cyclosporine. Things look different in the marrow when you are on cyclosporine. I wish I had it done before I restarted.
My case is different from yours because I am an AA/MDS overlap. My marrow does not look like I have AA anymore. I am hoping my condition is still immune-mediated and will respond to IST.
If I could do this differently, I would not have tapered while my counts were rising and I definitely would not have continued to taper while my counts were falling. I also would have gotten a BMB before restarted cyclosporine.
I hope this helps and that you start to see a response!