Old new guy

Hello, I guess I can say that I am new to this whole ITP, but that is not right at all, 25 years ago I fell into ITP, running all of the available treatments and ending up with the splenectomy in "94". All was well until feb 15 when ITP came roaring back with time served. I am a 48 year male with kids and grand kids at home. So far nothing is working, 135 mg of prednisone, IVIG holds for about 5 to 6 days, this Friday going for my third round of Titus, and now they just started on 75mg promacta a day. Today my level is 66 and Hopfully leaving to hospital after two day of levels at 4 and 10

Welcome, John!

I have done the "kids and grand kids at home" experience. It was very stressful, but also very sad when they moved out.

So much has changed since 25 years ago when you first had ITP; there are so many new options. It must feel like returning to college and finding that everything looks different!

It sounds like they are throwing everything at your ITP to see what sticks, and that is okay, except you may have trouble figuring out which treatment is working. A count of 66 is pretty good, so I wouldn't say nothing is working; stable counts over 30k really don't require treatment unless you are anticipating surgery, but "stable" is the key word. Which medication do they think is bringing up your counts?

I am not familiar with Titus, even after googling it; all I can think of is Rituxan. The only Titus I can find is that Titus is a brand name in Greece for the benzodiazepine Lorazapam, an anti-anxiety medication. Is that a typo?

Did the prednisone not work at all? or is it just not enough? or are your counts not holding when they try to taper it? Are you still on it, or are you tapering?

Promacta doesn't work that quickly. You have an excellent chance of the Promacta working, but the goal is only to keep your platelets above 50k (much higher and you are at risk of blood clots) and you are already there.

How do you feel about the treatment you are getting? Most hematologists work mainly with cancer patients, and may not be up-to-date on the treatment of ITP. Many people on this website feel they need to become really knowledgeable to be able to get the most out of their treatment.

I hope you will stick around. You will get a lot of support and good information from a great group of people.

--Rob

Hello, welcome! Yes, a lot of things have changed in the past 25 years. Hang around and learn; it will help you in the long run.

The main thing that has changed is that 'normal' counts are not necessary and many doctors do not even strive for that anymore. As Rob said, as long as counts are over 30k, that is safe for normal daily living. The manufacturers of Promacta recommend that you maintain a count of 50k, that is, the dose should be adjusted so that your counts hang around that number. You should not try to obtain a normal count since blood clots can be a concern.

I don't know what Titus is either but like Rob, I'm thinking it's probably Rituxan. Rituxan usually doesn't begin to work until 4 to 12 weeks after the first infusion. You still have a lot of time to see results from that.

I also agree that you are having a lot of treatments given all at once and not knowing which one is working will cause confusion. How were your symptoms when counts were low? Many doctors prefer to treat symptoms, not numbers, so having low counts does not mean that you have to frantically treat with everything under the sun. It can take time to see a response.

Hang in there. You seem to be doing okay right now.

Welcome John.
As has been said already, things have changed over the years. Along with new treatments, there is no longer the hard-fast insistence to attain 'normal' platelet counts. The new 'normal' is whatever works.
Some of us live quite well at what used to be considered dangerously low counts. I'm mostly in the 9k-16k range, with dips below 4k, and the occasional rise to a whopping 21k last January.

We're all different. Luckily, more hematologists are realizing that and treating accordingly.

Hang in there ..... Life continues.



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Hey Rob, thanks for the reply! I do believe that med was a typo and I believe that I meant to say retux. I will be having my third round of four tomorrow as well as blood work to find out my levels. my Dr. told me that he has never seen or even heard of platelets falling as fast as mine do. I could go from a max of 443 to 3 in 4 days. every time I go to the hospital I get the same initial stuff IVIG Platelets and steroids. just yesterday Dr. told me that they are going to start taking me off the prednisone gradually because it is not working anyway. so my current treatment is my retux, promacta my level is 66 yesterday. All is well and I love life!

John:

There are others who drop that fast, so you are not alone there. I agree, you are not responsive to steroids so they are not helping at all. IVIG is very temporary for most people and may only last a few days. It's considered to be a rescue treatment but not one that will cause remission. Platelet transfusions are useless for ITP and are usually only used when there is active bleeding, they are not used as treatments. Hopefully, that explains why you are dropping so fast.

Rituxan can take 4 to 12 weeks to work after the first infusion, but if a patient is responsive, they can achieve a remission even if it is only a maintained partial response. Promacta will give you a good chance at stable counts, but they may not be 'normal'.

yes I agree the platelet infusion was due to low number of three with massive nose bleed which they could not stop until I went to ENT and got packed. needless to say my last episode was not good at all!

hey does having ITP mean that lupus could happen?

Not usually, no. Some people do develop Lupus after a time but it is rare. Autoimmune disorders can cluster and some people have more than one.