It's time to treat....

I've had a good run (7 years) without treating, but with my hematologist have decided that it's time to give my platelets a boost. I'm pretty happy ignoring an occasional symptom (which normally happens when I'm sick) but last week I was sick when I went to my hematologist appointment, and had to confront that my count was 16, which is a lot lower than I've seen for many years. My count has been hovering between 35-55 for the past 2 years, but it was 29 in December at my PCP appointment, so I was following up with my hematologist.

I won't take prednisone or dex; really all we talked about was Rituxan and/or WinRho. I'm amenable to a low dose of Rituxan, and so I've got a 400 mg treatment scheduled for Wednesday (getting all 4 doses at once).

We also talked about WinRho to boost my count until I could get in for Rituxan (and until it kicks in). It was 3:30 on a Friday, but my hema thought there was a possibility, if it was in stock, of getting it before I went home. It wasn't in stock, so we agreed I'd watch symptoms for the weekend, get scheduled for the Rituxan, and then evaluate next steps.

The more I thought about it, the more I liked the idea of a quick boost from WinRho, so I emailed my hema this morning to see if I could get BOTH WinRho and Rituxan on Wednesday. I wonder if they will "play well" together. That used to be something I would know, but it's been so long since I studied the treatments, I can no longer remember enough about the mechanisms of action to guess if they can both be given on the same day.

I would think they could be given together, but I don't think I've ever actually heard of anyone doing it. Will they do the long Win-Rho infusion with hours of monitoring or just give the quick version since you haven't had any reactions?

7 years since Rituxan? Holy cow.

Sandi wrote: I would think they could be given together, but I don't think I've ever actually heard of anyone doing it. Will they do the long Win-Rho infusion with hours of monitoring or just give the quick version since you haven't had any reactions?

7 years since Rituxan? Holy cow.

I'm hoping that if they give the WinRho first, the ~4 hours the rituxan takes will be monitoring enough for a WinRho veteran. I'm not sure who decides that....the clinic pharmacist, or the hematologist.

I hope it works out for you. That's a lot to do in one day!

I don't recall ever seeing someone here get winrho and rituxan at the same time. How bold is your doctor, we'll see. Personally I'd do winrho and then a few days or a week later rituxan. Just so any possible problems would sort out properly. Have winrho and rituxan ever touched each other? Maybe you'll turn to stone, or grow snakes for hair. OK I'm getting weird.
Erica

I would not do both together, because if you had a bad reaction to one, you wouldn't know which one, and might end up being able to do neither. I think that may be what Erica was saying.

Rob16 wrote: I would not do both together, because if you had a bad reaction to one, you wouldn't know which one, and might end up being able to do neither. I think that may be what Erica was saying.

Hmmm...well I haven't heard back from my hematologist yet, she may be consulting the literature or waiting for grand rounds or at least conversations with colleagues. Or maybe she has Mondays off.

Rob, I've had both WinRho and Rituxan, so it's not like either is an unknown in terms of how I'm likely to react/respond.

Snakes for hair would be kind of cool....

WinRho "distracts" B cells from platelets by making the red cells look appetizing, Rituxan depletes the CD-20 specific B cells...low doses of both might complement each other, or might put a damper on the effects of both...

Tamar sorry you have to treat again - boy, the past 7 years went by quickly!

Curious - why wouldn't you do dex? I've never had it and I know I detest prednisone - as you probably remember it was 1 WinRho IV that put me back in "remission" in 2002. Had to get a new hematologist and saw her last month - she told me she would probably recommend dex if I need treating. I do not like that idea at all so was wondering why you won't do it.

Good luck Wednesday!

Melinda - two guesses.

1. It's a nightmare.
2. Counts often go up and drop back down quickly.

Sandi wrote: Melinda - two guesses.

1. It's a nightmare.
2. Counts often go up and drop back down quickly.

Yes and yes. In particular, I have a bad rebound drop when coming off prednisone/prednisolone, there's no reason to think dex would be any different. Plus I remember the horror stories of others.

Regarding the Dex: my husband have it 2 times with immediate complete response :1st one in combination with Ivig :counts dropped in 10 days, and 2nd time stand alone with counts still in safe zone now after 1,5 months..
The only side effect he had were some acnes. Our plan for now is to stick to it while it works (i.e. taking pulse thp when he drop below 20 ) and our hemo is fine with it.
Is there any other reason why are you guys so against dex? We understand long term usage side effects, but as I said, for now he is tolerating really good…..

Galaxy wrote: Regarding the Dex: my husband have it 2 times with immediate complete response :1st one in combination with Ivig :counts dropped in 10 days, and 2nd time stand alone with counts still in safe zone now after 1,5 months..
The only side effect he had were some acnes. Our plan for now is to stick to it while it works (i.e. taking pulse thp when he drop below 20 ) and our hemo is fine with it.
Is there any other reason why are you guys so against dex? We understand long term usage side effects, but as I said, for now he is tolerating really good…..

Galaxy, I am not considering Dex for me, because of my past experiences with steroids, and how punishing they've been on my body. I don't encourage or discourage it for anyone else....if it works for your husband and he finds the side effects tolerable, then it's a good option for him. My hematologist brought it up as a treatment she sometimes uses, but for me, I'd rather have low counts.

Agree! Dex is a strong steroid that can really interfere with daily life during the short time people are on it. Some simply cannot tolerate it. It also has a bad track record of not keeping counts up for a long enough time to justify its use. In Tamar's case, she has two other treatments that have worked well in the past with few side effects. I can see why she'd want to just stick with the proven ones.

Dex can work great for some people though and if they can tolerate it, there is nothing wrong with that approach!

Galaxy I really detest any type of steroid - but I learned the hard way never to say never again will I take it. To me dex seems more harsh than prednisone and that is why I would not want to take it. Tamar is an oldie but a goodie so that is why I asked why she wouldn't want to take it. It is great your husband has had such good results!

Thanks Tamar and Sandi!

Melinda, Do you think the dex could seem harsher because it is more concentrated? For some reason, dex is normally used as a high dose dexamethasone pulse, 4 days at 40 mg which is like 267 mg/day of prednisone, which is more than I have heard of anyone getting per day for ITP.

I am curious, because Ellen has only taken dexamethasone at such a high dose, and never prednisone at a similar dose. The dex hits Ellen fairly hard, but then it is over, with no need for tapering, and no real withdrawal symptoms. She has taken prednisone to break a migraine cycle at 40-30-20-10 mg over 4 days, which is not a comparable dose to the dex, and even at that much lower dose she has side effects.

I have never heard a reason why dex is used for the pulse, but I suspect it is because, unlike prednisone, dex does not have mineralcorticoid side effects, which maybe become significant only at higher doses. (Just a guess)

Silly, silly ITP. My platelets this morning pre-rituxan were 101K.

I had the infusion nurse check with my hematologist before hooking me up. I think it could have gone either way. Hema said to go ahead and do the tx. I understand her (likely) reasoning....the last time I saw a count over 100K was Dec 2011 and the last time I saw a count over 50K was Dec 2013, so the trend was definitely going the wrong way.

I'm currently taking a week's worth of Keflex, and so maybe that caused the bump. OR it could be the hot sake I drank on Friday after my appointment, or even the PopTarts I bought on Saturday. I was going to announce my PopTart purchase here, but I'm not sure how many people would get it at this point.(munching sound in the background....)

Got 400mg of Rituxan, so equivalent to the 4 x 100mg low dose without the return visits. It took about 4 hours with a 30 minute break in the middle when my throat got scratchy and sore. Needless to say, there was no mention of WinRho.

tamar,

Great news about the count, and that all went well with the Rituxan!
Please let us know how your counts progress. I am curious whether that "bump" (which I suppose comes from the Keflex) will hold over time or fall back again before the Rituxan takes over. It sure would be nice next time (hopefully not for another 7 years!) to try Keflex without the Rituxan and see if your counts react the same again.

I had the same thing happen with Keflex once and for a long time, that was the only antibiotic I would take.

It would have been interesting to see what your counts would have done without Rituxan, Tamar. When is your next count?

Rob16 wrote: Melinda, Do you think the dex could seem harsher because it is more concentrated? For some reason, dex is normally used as a high dose dexamethasone pulse, 4 days at 40 mg which is like 267 mg/day of prednisone, which is more than I have heard of anyone getting per day for ITP.

I am curious, because Ellen has only taken dexamethasone at such a high dose, and never prednisone at a similar dose. The dex hits Ellen fairly hard, but then it is over, with no need for tapering, and no real withdrawal symptoms. She has taken prednisone to break a migraine cycle at 40-30-20-10 mg over 4 days, which is not a comparable dose to the dex, and even at that much lower dose she has side effects.

I have never heard a reason why dex is used for the pulse, but I suspect it is because, unlike prednisone, dex does not have mineralcorticoid side effects, which maybe become significant only at higher doses. (Just a guess)

Rob all I know is that it seems the experiences I've read about here were not good and that is why I feel that dex is harsh. It just seems it slams the body and one cannot function at all, can't do anything from sleeping to being human. Yes only 4 days, but from what I have read it is 4 days of hell. If I had to take the equivalent of 267mg of prednisone a day you would certainly be reading about me in the newspaper and hearing about me on the news - 60mg of prednisone a day was bad enough. Personally I detest any type of steroid - if/when it comes to needing to treat again I'll just have to see, I do believe my new hematologist and I could butt heads. Hopefully I'll never have to find out - but I learned long ago, before ITP when I was put on prednisone for serum sickness, to never say "I'll never take that again'.

Melinda,
Any reaction to Dexamethasone could be an individual thing just like any of the other treatments we go through. I had just finished my 4th course of Rituximab and that day had a blood count of 0 when they then started me on Dex. At the time I was still on 75mg of Prednisone, 2 x 200mg of Cyclosporine and 3 x 1,000mg of Tranexamic Acid - I stopped the Prednisone and took a 40mg Dex tablet for 4 consecutive days and my counts went 13,8,4 and 2 so unfortunately it was fairly ineffective. My haematologist had said to me that I would hate her for giving it to me as it obviously can really affect some people but for me it was no worse than Prednisone (brain fog and hand trembles). After those 4 days I went back onto Prednisone and continued the weaning off period for another 3 months.
Robert

Actually, there was a member here who actually took 1,000 mg's of Prednisone daily for a while. If it were a different person who said that I never would have believed him. It was Steve (Gort) who can be fully trusted to tell the truth.

Gort: Taper very, very slowly. The taper is worse than just being on steroids. I have been up to 1000mg in one case and 2000mg in another, and both times I wish I had tapered more slowly. The taper was 5x worse than before the taper. So, however slowly your doc wants to go, you may want to think about going slower.

pdsa.org/forum-sp-534/7-treatment-general/9431-120mg-of-steriods.html#9509

Gort: I think trying Promacta next does make sense, but it is not your only option. You can try high dose steroids -- the first time I tried that we went up to 2000mg/day, the second time we went up to 1000mg/day. It didn't work in my case, but my hemonc has had it work for another patient.

pdsa.org/forum-sp-534/6-general-itp-discussion/4971-i-redefine-refractory.html#5238

If I had to go over 80 mg's, I would be on the news too, probably for murder or jumping off of a bridge. Weird Jack sees wild animals and other assorted hallucinations when he is on Dex (but he seems to actually like it).

It's not just the four days on it that are bad, it's also the four or five days after you stop that can be even worse.

Rob16 wrote: tamar,

Please let us know how your counts progress. I am curious whether that "bump" (which I suppose comes from the Keflex) will hold over time or fall back again before the Rituxan takes over. It sure would be nice next time (hopefully not for another 7 years!) to try Keflex without the Rituxan and see if your counts react the same again.

I don't think I'd try Keflex as a treatment, Rob. It's interesting that my count went so high (from so low) but I can't imagine it being anything other than a band-aid. Sort of like if my count skyrocketed after a flu shot, I wouldn't get a flu shot the next time my count fell. Although....if it's a choice between keflex and prednisone or dex and WinRho isn't an option for a fast boost, who knows?

Sandi, I've got an order for weekly counts, so I can go whenever. I'll probably plan it around my travel schedule. Might be in San Diego the first week in March!! (a treat after the cold we've been experiencing).

I've had high dose prednisolone via IV (1000mg x 3 days) and my count went up significantly (from 75 to 290 if I remember correctly). The treatment was actually for MS, not ITP, and it was the experience that confirmed that steroids aren't for me when it comes to treating ITP. 10 days after the tx my platelets dropped to 25, much lower than they were beforehand.

uf, good - I’ve already thought that we overlooked something about dex .
Tnx for answering 

Weird Jack sees wild animals and other assorted hallucinations when he is on Dex (but he seems to actually like it).

As long as one understands that it is just the Dex, one may as well enjoy the ride.
The panther walking down my office hallway wasn't wild, it appeared to be quite tame.
And I learned that you can still walk even if you think you have 2 right legs and 1 left leg.

I've taken 40x4 Dex pulses many times since 2002. Works as a quick fix for me, but never lasts.
As for side effects? Yes, they can be nasty...but I've usually still worked my engineering job, worked my side business in the evenings, and played in my band on weekends....life doesn't stop. Nothing like fronting a band of old musicians in a biker bar on the 4th day of a Dex pulse! I get even more crotchety; "NO, we don't play that freakin Freebird song!"

Funniest thing that ever happened to me with Dex was when the pharmacist gave me 8 pills for a 40x4 Rx. She told me that NOBODY takes 40mgs of Dex at a time and it must be a mistake. I waited while she called my hematologist...duh.

Tamar:

San Diego! I'm jealous. My daughter lives there, in Oceanside. Keep us posted on the counts.

Jack:

SO sorry for calling your panther a wild animal.

My brother was in the hospital on 1000 mg/day of prednisone. When he went missing, they finally found him outside in his hospital gown unloading a delivery truck.

I can tell my platelets are down quite a bit today...maybe it's time for a PopTart.

Rob, I hope it wasn't winter that day!

Tamar, I have some Toaster Strudel. Would that work?

I know I'm a little late!

Just had to say I did the Winrho and Rituxan thing. The first time Winrho and Rituxan 1 week later. This last time Winrho a couple of weeks before Rituxan.

I believe one boosted me up and the other kept me up! Here's hoping you have end up with higher and stable counts for many years!