Newbie!

Hello!!

I'm brand new to all this, but scared to death my platelet count is at 3 the nasty steroids didn't work so supposed to start rituxan on the 4th, but I'm worried sick about the new meds, any advice.

Thanks

I will get my 4th infusion of Rituxan tomorrow. The first will be the worst if you have any issues. I only had minor itching in the back of my throat like an allergy attack. A good dose of Benadryl and a Steroid and all was good. Make sure you tell your nurse when anything feels different during the process. The faster they know you are reacting the easier it is to counter. Bring a lot of stuff to keep you occupied for the day. The first infusion will take a minimum 6 hours, if you have any reactions they pause for 15 minutes after symptoms end. You will want snacks or a meal also. If Benadryl makes you sleep you might nap all day. Another thing to remember is that Rituxan can take up to 12 weeks before you see improvement. I am having my 4th and final tomorrow and my count is still going down. I expect to go back on a higher dose of Prednisone for a while or one of the other steroids.

What is the dose of steroids?

Did they give you IVIG?

How did they diagnose you?

A little background can be helpful?

100 MG of Predidsone daily
No IVIG

Hey D Mann, hope your count holds up tomorrow. Avoid those steroids.

magnolia, had my first Rituxan last Friday. Talked with nurse about how it was my first with Rituxan. LOL, my first, I am so shy. So she kept it slow the first 10 minutes.

About 30 minutes in, my tongue felt funny ever so slightly. Best I can describe, it was like air blowing over the surface. Could hardly feel it and went away after about a minute. Didn't call the nurse.

About 35 minutes in, my throat felt funny. Again, could hardly feel it and it was like air blowing over, went away in less than a minute. No nurse call.

For the next hour and a half I had a low level itching sensation primarily in the trunk of my body and around my head. A sort of mild tingling sensation. Didn't call the nurse.

Gosh, not much of any reaction in my case. Didn't need any extra steroids. Like you I was pretty nervous and anxious going in. Feel very relaxed about having my second treatment tomorrow. As I understand, most folks only have a reaction on the first treatment.

Hope this helps...

Got my 4th and final dose today. Glad to be finished with the stuff, got this one done in 4.5 hours. My count was up to 14 today finally going the right direction. I look like I have been in a fight my ribs and arms are covered in bruises.

Glad to hear everyone's infusions are going well!

Thank you I hope you get well soon

magnolia,

You take 100 mg/day of prednisone, and have a platelet count of 3? You may be one of the lucky few who lack the enzyme to convert prednisone to its active form, prednisolone. You might ask your hematologist for a trial of prednisolone. It is important to have a "rescue" treatment that you can count on, and for you, prednisone isn't it!

Good luck with the Rituxan. I hope it works quickly for you.

barb, after the treatment last week I was sure to do one more thing. I was sure to eat cooked sushi for dinner that night, LOL. Somehow it made me feel better just doing this.

So magnolia, with that, I can highly recommend cooked sushi after you start treatment.

D Mann, not too late to get a little cooked sushi in. Start a tradition?

FYI, second Rituxan treatment today for me. Had no funny tongue or throat feeling and no body itching sensations. None. Must have the right antibodies now for disposing of the mouse protein debris in Rituxan. LOL, but did call the nurse this time. Had to discuss Christmas and family gifts exchanged.

Hal my only use for sushi is bait

Glad your second round went well. My count last week was in the 140's. With the holidays, I did not get my CBC done this week, so I am anxious for next weeks lab. How have your numbers been?
I CANNOT wait for sushi again. My doc said give it a few months, but was not overly concerned about me having it., so I am thinking March-ish.

My numbers? Doc didn't order a count on first treatment. Did get CBC along with second treatment. They are sent off to be processed so there is always at least one day delay. Then it is a hit or miss as to whether they will call me up with the results. May not have any numbers till I see doc again. Blah.

LOL, just cook the sushi and you don't have to wait.

Cut bait and eat the sushi. LOL, If you don't partake in the tradition, baaadddd things could happen.

My Hemo has a lab in office. I go to the lab first and by the time is see doc he has that days results. He has even told me any time I feel like I may need a count to come in and they will draw.

i just want to say Welcome as someone who has had ITP for 20 years and has been to zero many many times. You are scared now but after a while you won't be scared and like many of us will consider ITP a pain in the butt.

The ITP rollar coaster is just that sometimes your level and steady sometimes your up and sometimes your down.

With ITP you can still lead a normal life and do the things you used to do. (unless you juggle knives for a living then I would suggest you stop even if your counts are normal) You just have to be mindful of your counts hence the pain in the butt part or plan ahead. I say that because when I'm going camping with friends they book time off and away they go. I book time off then a day or two before I get a platelet count done then treat if needed and then I can go camping.

Since being diagnosed I've done many cool things: rock climbing, camping, canoeing, college, Kayaking, raised 2 kids did the polar bear dip 3 times!

I like to brag: I jumped out of an airplane without a parachute. (ok so the plane was on the ground and parked but I did it) My doctor said no skydiving. I always said someday I want to jump out of a plane so I did. (bucket list check!)

How are things magnolia/Hailstorm07 ?