New Diagnosis of ITP

Jim:

Discharging at 12k isn't unusual as long as bleeding symptoms are okay. Many of us have not been hospitalized at all even with counts under 5k. I was working with counts of 3. Things have changed a bit in the past few years and doctors tend to go by symptoms rather than counts.

As for Rituxan....I wouldn't exactly call it a maintenance drug. If a person is responsive, it can cause remissions that average about a year. Some get longer and some get less than that. I had 13 months treatment free after my first four infusions.

The dose of 100 mg's of Prednisone is a bit high, but it is usually dosed by a person's weight, so anything between 60 and 100 is common to start with. Side effects will start to hit around now; good luck! I usually have to sleep with the TV on too. If I turn it off, my mind goes crazy and I can't stop thinking. The best way for me to fall asleep is to use my iPod and put on a thunderstorm that lasts about an hour. I'm out in minutes. Worth a try!

Jim, I agree with Sandi with regard to being discharged with a count of 12, as most of us here don't get hospitalised at any count, however low so don't worry about that. Personally I just carried on as normal with counts of 1 many times, as long as any bleeding is under control it's not a problem.

I'm having a lymph node biopsy on Monday, I'll think of you while I'm there.

Good luck, Ann. Let me know how it turns out.

good luck Ann....hope it went well today!

Sandy, great idea about the iPod/Thunderstorm sounds; I'll have to steal--er, BORROW my son's iPod! Wow, 8600+ posts, you could write a BOOK on ITP! (haven't you already, just in POSTS here on PDSA alone!?!?!)

My first of four rounds with Rituxin start Wednesday (6-3-15) today's platelets climbed to 30,000 so I feel confident.

Jim, Good news you are responding to the prednisone. It's good to know you have something to fall back on. I hope all goes well with the Rituxan. If the first infusion goes smoothly, the others usually will, too.

My grandfather was a country doctor and delivered a lot of babies. Demerol was often used as a painkiller in childbirth. One difficult childbirth he was waiting for the demerol to kick in and kept saying "Come on demerol!" Guess what Mom named the baby!

Jim:

I don't know of anyone here who has ever had Demerol prior to or during Rituxan. Usually the pretreatment is Tylenol and Benedryl, sometimes Solumedrol. Those are to prevent allergic reactions. Demerol is a pain med...Rituxan doesn't cause pain. That's odd.

I hadn't heard of it either. It is used to treat rigors, should they occur, not as a pretreatment.

"Meperidine hydrochloride 12.5-25 mg i.v. may be administered for the treatment of infusion-induced rigors."
www.medscape.com/viewarticle/406941_11

"Although rigors are not medically significant, they may be frightening to patients. If rigors occur, we manage them with meperidine."
www.ncbi.nlm.nih.gov/pmc/articles/PMC2833973/

Yesterday my first round of Rituxan went VERY well, I had no side effects whatsoever! There was also Benadryl in the drip IV so I was quite relaxed and nearly fell asleep! Six hours later, after lunch and a lot of snacking (Prednisone hunger pangs for two weeks now!) I was able to drive home no problem.

The Demerol I was instructed to bring was not needed. I'm tapering down this week to 80mg Prednisone from my initial 100 mg daily (I'm a big boy, 6'3 225 lbs!) and things are looking good!

My platelet count was 50,000 yesterday; I'm happy if the doctor is happy! I forgot to ask if I can take liquid Benadryl OTC (over the counter) to help me sleep at night; I still can't fall asleep until 1 am or later, even with the iPad or TV on. My usual six hours of sleep is reduced to about five. Energy levels during my busy active day are high 90% of the time; I sometimes get a little winded as I tend to have a lot on my plate! The patechia and bruising have all but disappeared, thankfully.

Thankfully I feel a bit less "buzzed" from the Prednisone; my wife senses my temperament and patience level is close to normal, and I'm looking forward to a successful tapering down to 60mg daily next week, then 40mg daily for another week, etc. etc. The next three weeks will each have me continue with the weekly Rituxan treatments.

Since I've also been getting the occasional leg cramps recently, every day I eat two or three bananas. Lots of cantelope too, potassium boosters!

I'm gonna be swinging from the tree branches at the rate I'm eating........

Hey everyone, all is well so far over here, count is up to 133,000 this past week!!! It was such a relief, I about cried in the office lol!! They tapered me from 60mg to 40mg of prednisone, this is my 3rd day and I feel line, but my mind feels a little off? Idk if its stress or if it's the steriods, I've been trying to sleep asap, but I've also been working 12 hours the past 3 days so it's been tough...anyhow I feel good, I'm hoping for the best, trying to monitor what I do and my platelets so I can see what does effect them...I'm getting my labs drawn once a week now until I'm tapered to 5mg I think they said of prednisone, hopefully all is well I will keep you all posted, they did say I could go on my cruise so I am so excited!!!!

Great news! I'm glad to hear that all is well!

Since they started tapering my steroids my platelets dropped to 85,000, however I'm using patience and prayer that they will continue to rise as the steriod use goes down, they want me to go to 20mg this week, exciting and scary as I leave for my cruise this Saturday, but I know 85k is stable and I got to have faith, they know what their doing and hopefully they didnt forget that I'm leaving this week for my cruise this weekend, I have an appointment this thursday before I leave to. Keep you all posted!! Hope everyone else is doing well!!!

85,000 is a great count, hopefully it stays up as you taper your steroids. When you go in for your appointment be sure to say that you are going to be away and will that impact anything. My 18 yo daughter was going to be away for a weekend and we talked to her doctor and developed a plan. And yes I was a little nervous because her last count was 8 so I was stressing safety but she did fine!

Enjoy your vacation!

Today I finished my fourth (and last) Rutuxan infusion.

Platelet count was 170 and very minimal side effects (some minor, muscular cramping in legs and arms, quick onset and never lasting more than a few minutes)

Happily I am also down to 10mg of Prednisone daily; next week I take half that (5mg daily) for a week, then 5mg every other day. I am sleeping better and less edgy than I was weeks ago beginning with 100mg daily (I'm 6'3" 225 pounds/102kg)

I'm hopeful and happy, and will update at my next blood count in three weeks!

Jim,

Your 170 count is terrific, coming so soon. 4-12 weeks is the normal response time and you are barely 3 weeks in? I don't remember where I read it, but I have read that a quick response tends to be a stronger and longer lasting response.

Watch that prednisone taper, especially from 5 mg down. Your adrenal gland has been asleep for for a month, and at 5 mg or so it will have to start producing its own cortisol. Many here have needed to taper much more slowly to avoid symptoms as well as to keep their platelets from crashing. Check back to see what others more knowledgeable than myself have to say on this.

This is really great news, Jim. Thanks for sharing it.

Great news Jim but I agree with Rob watch that steroid dose..My consultant dropped mine from 10mg to 5mg in one go & I ended up at my GPs surgery feeling absolutely dreadful. She set me a new regime of 10mg/7.5mg on alternate days for a fortnight then 7.5mg/5mg on alternate days for another fortnight before dropping to 5mg a day and it worked a treat. I'm still on 5mg a day and if I ever manage to get off it completely I will taper from that using very small reductions after what happened. Anne