Nervous Wreck!!!!!!!!!!!

Well Josh's counts were up to 96 last week so we did a repeat bloodwork on Tuesday this week. I have been on the phone for two days trying to track down results. The lab told me that the results were faxed directly to the doc yesterday (not a good sign). Im waiting for the hem nurse to call me back, Im just sick thinking of what his count might be down to now, especially since they havn't weaned the 50mg/day of pred yet. I still think the fact that his chest sounds like garbage has something to do with it. Three weeks ago he was diagnosed with bronchitis, and was put on a week of antibiotics, it did get a bit better then worse again when we finished the meds. Now hem refuses to put him back on it!?!?!? Im assuming that since he has virtually no immune system to fight the bronchitis that his wee body needs some help!?!?! ie Antibiotics! He has no active bleeding yet, but the "peekies" are getting worse.
I also believe that with the long term steroids, he should have his blood sugar checked no??? They (hem) says no thats not necessary, but we had one doc from Saudi Arabia that said in his country while someone is on pred they always monitor the blood sugar!?!? So why won't they here??? I still am not used to this garbage it scares the hell out of me, still, I should be used to it by now no??? I wonder where we go from here. How does Rituximab work? Im wondering if it will be safe to use on a heart transplant patient...I dunno they havn't even suggested it yet.
Well if anyone has any words of wisdom for me or just some comforting words to let me know that IM not totally wacko it would be greatly appreciated!!!! Thank you all!

YAY!!!! just got results, his count is 100, woopeee we've graduated to three digit numbers! LOL Tomorrow the pred goes down to 40mg/day. I still have the question of bloodsugar!?!? And tomorrow he goes to the clinic for antibiotics hopefully too. Just wanted to share the good news, now I can eat again! LOL I stop eating all together when Im stressed!

My blood sugar is monitored more closely while on pred, my sugar has been up a few times while on pred. They did say it should go back to normal one u reduce or get off the pred, I would question the doc on why he doesn't want to check it, it's a pretty simple thing to do.

I never had my bloodsugar checked but every time I went to the Hema (at that time it was once a week) for a CBC or an appointment with him, the nurses and my doctor would remind me that some people have issues with their bloodsugar while on Pred. They encouraged me to eat a really balanced diet and to stay away from sugar and sodium as much as possible.

One time, I gain 6 pounds in one week and they told me to really focus on reducing the sugar and sodium and that worked. My weight came back down after just a few days. I did notice that I would feel sick if I ate a lot of sugar when I was on Pred. I was on 60mg of Pred for 5 weeks and then did my taper by 10mg a week. So in total, I was on Pred for about 2 and half months.

I know this doesn't exactly answer your question, but you definitely should bring it up with the doctor and get some more clarification as to why he/she is not concerned. Have him/her explain the rationale.

Good Luck!

Amy

I don't understand why they won't monitor his blood sugar, but Im taking him to a clinic and the doc thats there is the one that disagreed with hem about the pred wean three weeks ago, and put Josh on antibiotics for his bronchitis, so I will ask her about that today. She's European so maybe she does things differently again. I don't know. Sometimes Josh's hands get a bit shaky, so Im thinking really his bs needs to be checked.

Angela:

Actually, checking blood sugar when a person is on Prednisone isn't common practice. The only people who seem to have had problems were those who were already diabetic, or those who were predisposed to diabetes and on steroids for quite a while.

Prednisone does cause blood sugar to rise, mine did too, but it wasn't above danger levels and it was temporary.

Thank you all for your input. I did take Josh to the doc today to see about his bronchitis, she agrees that he should be (and is) on antibiotics. She does NOT agree however with the 10mg per week pred taper, she still thinks it should be slower. I dunno, Ill just go with what hem says for now.
Joshua has the tips of his fingers peeling and a bit wrinkly sometimes, but only for a while now, has anyone else had this as a result of pred? It dosn't hurt him, but they peel everyday bits and peices...I asked the doc and she said it might be a result of the pred, but she didn't really know.
We had an emotional roller coaster, Im being tested for Reynauds (sp?) phenomena and lupus!?!?!!? Oh my gosh when the ride end??? I want off!

I have Lupus. Just PM me if you have any questions or post in the Lupus section. Sorry to hear that.

I've never heard of peeling skin as being a side effect of Prednisone.

Blood sugar was finally checked and suggested by transplant team rather then hem, that was without me saying anything! Checked in blood and urine, his levels are great which makes me happy!
His BP is up waaaay too high too now so he's going back on med for that.