Update & Nplate

Has anyone been able to get off Nplate and maintain a safe count? We were on the verge of taking Caitlin off Nplate. In fact, last week, we were supposed to be able to skip a week but unfortunately, with drops in her count the last 3 weeks, the hematologist advised against it. I had to go pick up an additional vial and inject her. I was hopeful that she was in remission, but I am also in awe that a tiny amount of the drug really allows her to have good counts and maintain her physical activities. We have been going weekly for about 8 weeks now and see the hematologist again on Monday. I am going to tell him that we will keep her on the drug, but to allow her to go back to monthly blood draws. It is way too difficult to explain every week why we have to go and tell my boss at the same time that she is fine. They've been flexible for almost 5 years now so I cant blame them for getting annoyed with asking off so much. I am also beginning to tell that certain things are changing with her body. She is no longer able to handle being out in the cold for long. She is actually physically ill if she stays out for longer than 10 minutes. She has learned enough about herself that she tells me "I dont feel well, but I shouldnt have stayed outside with my friends so long." It doesnt make me feel good hearing this but Im glad she is recognizing what her body is telling her instead of ignoring it. She feels better only after she has slept it off. Hope this finds everyone well and hope everyone had a wonderful Thanksgiving! We have so much to be thankful for!

Pauline - if she is stable on N-Plate, it seems reasonable to cut back on the blood draws. I hope her doctor agrees.

I am the same way in the cold. I avoid it as much as I can and usually only go from car to building and vice versa all winter. You live in Texas right? Luckily, it's not as cold there as it is in the North. I'm sorry she developed that symptom...it really stinks. Does her skin burn when she is cold?

I thought I might get into remission and get off the drug too but it hasn't happened. I tried using it less often but my count does fall. It seems that for me using a very small amount often is better than using more less often if you see what I mean.

I'm also just about to go from 4 weekly blood tests to 8 weekly which is fantastic. I'd think it a very reasonable request that Caitlin do the same.

Sandi- are you talking about physical burn or where it feels like it is burning? Im not sure if her skin feels that way but she does get welts and swells up when she is out if the temps are below 50. She reacts the same way to really hot temps but the welts and swelling go away after a few hours of being inside. It doesnt happen to any of the rest of us so I know it is unique to her.

Ann-we were only going weekly because we were trying to lower her dose. If she had skipped her dose last week and they were continuing to experiment with adjustments, I wouldnt mind. But I think now we re going to end up keeping her on the same dose so the huge fluctuations should not happen. That is awesome that you are moving to 8 week blood draws! They still havent approved it for children here and I dont know that they're going to. We only have a year left unless they extend it again. Are you on the trial anymore? I wonder if there is a little more flexibility off the trial? (Maybe not, bec adults have to go in weekly, which is a pain and I dont understand the reasoning behind that.)

Yes, a physical burning. I'm glad she doesn't have that. The welts sound awful. Poor kid.

tacmom wrote: Ann-we were only going weekly because we were trying to lower her dose. If she had skipped her dose last week and they were continuing to experiment with adjustments, I wouldnt mind. But I think now we re going to end up keeping her on the same dose so the huge fluctuations should not happen. That is awesome that you are moving to 8 week blood draws! They still havent approved it for children here and I dont know that they're going to. We only have a year left unless they extend it again. Are you on the trial anymore? I wonder if there is a little more flexibility off the trial? (Maybe not, bec adults have to go in weekly, which is a pain and I dont understand the reasoning behind that.)

It's not been approved for children here either and I am not sure that it ever will be because children here are by and large not treated so it isn't a priority. Of course there are children who need treating but because they are so few there are very few studies done and things just don't seem to be progressing.

I'd forgotten that Caitlin was on a trial and you have to follow the rules. I had to go every 4 weeks during the trial and just continued doing that when the trial finished last January. Getting to every 8 weeks is just magic!

Saw the hematologist yesterday and Caitlin's count continued to drop so they upped her dosage. Since they upped it, they have to check it for two weeks, then we can go back to monthly visits. I think we are looking forward to less visits more than anything! (She has an increase in nosebleeds, bruising, and petechaie so I am almost relieved for the increase to get her up higher.) She jammed her fingers last night at a basketball game and her fingers are black and blue. (Looks gross!)