Temporary Promacta usage vs. long term therapy

I was diagnosed with ITP in August, 2011,and have been through prednisone and Rituxan treatments so far, with no luck. My count, tho, stays around 20 fairly consistently, with no symptoms of any kind. So here's my dilemma; my hematologist says it's a bad idea to consider any long distance travel/vacations with such a low count (I have relatives in Italy and try to go every 3-4 years, but it's been 5yrs so far and the ITP isn't helping!).We've briefly discussed trying Promacta on a temporary basis while traveling, and then go off it when I get back. Has anyone tried this approach???I appreciate anyone's experiences with short-term usage of any drug to keep the numbers up, as I don't really need to be on long term therapy in my current situation.

Luca:

There would be two problems that I can think of with this approach. One, Promacta can take weeks or months to work, so you might be on the drug for a while before seeing results. Two, sometimes counts bottom out when stopping Promacta. You'd then be in a position of having to treat with something else to get them back to your normal level.

I think that what you want to do is a good idea, just not sure that Promacta would be the way to go to achieve that.

Thank you Sandi for the quick reply! Yes, I've read these things about the TPO's and they both are problematic; does anyone have any other drug suggestions? For example, the prednisone only worked for about a week before my numbers went down again. I haven't tried any other "emergency" drugs like IVIG, but do any of them have a lasting (i.e. more than a few days) response pattern? Also, right now I'm being managed by a hematologist and am considering a second opinion outside of this specialty, (e.g. Immunologist, oncologist, witch doctor??). Does anyone have any experience with other specialties that take a different angle on ITP??

Usually, only Hematologists are qualified to deal with ITP. I don't know of anyone who is managed by a different specialty. I can't really think of any meds that you could use to pull this off that would leave you at a good place when you stop. Decadron (Dex) or Win-Rho might be considerations, but you'll have no idea how you will respond or what would happen when counts go back down.

Luca have you tried Dexamethasone? For me it works better than Pred.

NO, and now I'm curious as to why my MD has never mentioned it! I always assumed they were equivalent, and I did get a nominal response from Prednisone (I went from 20's to 50-70's on 80mg), so I really like your idea. How has it worked for you, and did you have any problematic side effects with it?

The problem with Decadron (Dex) is that some people crash as soon as they stop the drug. It's given for four days, side effects can be horrendous, and many do not sustain the counts unless they are doing another treatment simultaneously. It may not be a bad idea to try it, but do it well before the trip first to see how you respond. It's a lot more potent than Prednisone.

My dex side effects were nothing compared to pred. Water weight is really the only problem I had with dex. Pred weight gain can't sleep mood swings heart racing. Pred was horrible on me.

Thanks Amber (?)! I'll run it by my MD. Do you use Decadron on a regular basis, or was it one of the many trial and errors that ITP patients seem to go through?

Dex tends to get worse the more you use it. It's over faster though.

I agree with Sandi, Dex gets worse the more you use it.
I have used Dex a lot since 2002. I have a standing Rx for it as a rescue treatment. It is far nastier than Prednisone. The good thing is it is usually given in a 2 or 4 day 'pulse'. There is a great chart which someone posted here awhile back...it enables you to see the relative doses of various steroids: [url] www.globalrph.com/steroid.cgi [/url]
If you enter an 80mg dose of Prednisone on this, you'll see it is equal to a 12mg dose of Dex. However, the normal 4-day pulse dose of Dex is 40mg a day, or the same as a 266.67mg of Prednisone per day!
Just a teeny bit more potent!

Dex is the only drug that I have had to argue with the pharmacy about. They assured me that NO ONE EVER ("never ever ever") would be prescribed 40 mg of Dex a day. A call to my hema straightened them out fairly quickly. I understand their reluctance, it only comes in 4mg tablets.

All that said, Dex is a great 'quick fix' for me. I know I can do a pulse of Dex and get into the 50k range if need be. It simply is not pleasant to take for any length of time. Very interesting to take while working your normal job, your side job, and playing music in biker bars on the weekend. However, it does enable me to sleep in my own bed when counts hit sub-4k...instead of getting talked into a hospital stay.

I noticed that you are at 20k without treatment? If my count was 20k with no treatment, I would not treat at all.
But that is just me and I'm happy to be in the upper teens with treatment.
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I only use it to get counts up fast the 4 day boosted

I only use dex for ER to get my counts up and they most of the time stay up for about a week. Pred as soon as I start to come off the counts go down.

I know, Amber, and Dex can be a good med to avoid the hospital and IVIG, but you really want to be sure it's necessary before doing it. Like I said, the side effects get worse the more you use it and it's not good long-term. It's also going to mess with counts while using Promacta.

That is the only reason why I take is to avoid the hospital. And oh yeah it does mess with the counts it raise the really high but a week or less.