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T-Cell LGL treatment

Jim 49
Posts: 3
Joined: Mar 2014

In 2012 I was diagnosed with MDS, but later on they diagnosed T-Cell LGL.

At one point, I needed a blood transfusion every three weeks. I was put on methotrexaat for 7 months without any effect. After a consult with Professor Schouten in Maastricht, the Netherlands, I was put on neoral ciclosporine and, to my surprise, it actually turned out to be very effective. I started using it about 15 weeks ago and haven't had a single blood transfusion since. My HB has been steadily increasing and where it was once around 4, it is now 7.5.

I share this here in the hope that it can and will be of help to others.

One thing in closing, I am glad I didn't give up hope. I hope you won't either.

Good luck everyone!

bendanyh
Posts: 4
Joined: Mar 2014

Hi Jim,

Good to know what you've shared. Wondering whether you had any transfusion bewteen HB 4 and 7.5? Thanks.

bendanyh
Posts: 4
Joined: Mar 2014

Hi Jim,

Good to know what you've shared. Wondering whether you had any transfusion bewteen HB 4 and 7.5? Thanks.

Jim 49
Posts: 3
Joined: Mar 2014

Hi Ben,

No, not a single transfusion.

bendanyh
Posts: 4
Joined: Mar 2014

Jim,

Amazing that you did't have any tranfusion at 4. I'm going into week 7 taking methotrexate. It really takes time. I'll need another transfusion this week. My doctor normally orders a transfusion if my HB is below 8. Thanks again for sharing. Best wishes!

Jim 49
Posts: 3
Joined: Mar 2014

Hi Ben, for good order: I normally did get transfusions when the HB was below 5, althought I once didn't get a transfusion until it was at 3.9, but after being put on neoral ciclosporine, and my HB was at 4 at the time, the HB went up so fast that I haven't needed a transfusion since. The reason why my doctor waited so long for transfusions is because it isn't particularly good for the body, e.g. the build up of iron. Good luck!

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