Help need a crash course

Hello everyone I have been absent from the site for several years. I found it to be wonderful source of information and support. I will give you a short history, then get to my problem. My Hematologist of over 10 years left the practice I was going to, and has been working elsewhere in a very limited capacity. I just found out she is leaving this new place to work with Hospice. I will see her for the last time this Friday. I hope to discuss recommendations for my future care and I hope she can refer me to someone I can trust.
I have had ITP for almost 20 years. I still have my spleen. I initially was treated with Prednisone which I will never do again. I then chose watchful waiting for five years. The remainder of the time I have treated with Win Rho 3 or 4 times a year.
I am self employed with two jobs, one of which is operating a day care in my home. It is next to impossible to take time off as then all my clients have to find alternate care for that day. My doc and treatment center are one hour away.
I did not know the Doc was leaving as I had a hard time getting the time off and went 5 months in between treatments. I expected when I went in to have the continued winrho with the replacement Doc. He was rude, nasty and told me that winrho was no longer a recommended form of treatment and that I should get Rituxan or go back to watchful waiting.
I found during my five years of watchful waiting that I was tired all the time, depressed, retained fluids and short of breath and had major sleep issues, only able to get 5 hours a night. Not an easy thing in my line of work to feel dragged out and exhausted. I have learned to spread the winrho treatments out enough where my counts stays up to a level that I function well at and feel good. , (I start out with around 180(used to be 250 but blood pressure meds knock it down) and it drifts for a few months down to 70 at which time I start to have sleep issues and as it falls to 50 I then experience all the other symptoms. So basically I only feel bad a total of maybe 8 to 12 weeks total vs an entire year. I am still wary of Rituxan and due to how it is administered I would lose a huge amount of money as I would have to close to go in every day, plus drive the two hours plus.
So to those of you who have been active on here, is it true that winrho is no longer one of the first line treatments? I need to be brought up to speed from REAL PEOPLE like you on treatments. No prednisone, no spleen out. But am I being foolish in not being receptive to some other forms of treatment. I already went the side effect route years ago. I am pretty healthy with what I have been doing all these years and am frankly scared to give up this path to explore treatments that have come along the last several years since I am not in danger. I don't want to court a whole new time of frequent appointments and bad side effects.
I need to be informed before I meet with my Hemo one last time. Thanks in advance

Win-Rho is still a viable treatment but isn't used as much because of the black box warning that came out a few years ago. It is now supposed to be administered by a slow IV and the patient should be monitored for hours afterwards. I remember when it was a 3 minute IV push and I'd be out the door. Not any more!

Rituxan is a long infusion that can be given two to four times....once a week. You'd only have to go a few times and you'd be done. I understand the hesitancy; it is a heavy duty treatment. There are no easy answers since they all have potential side effects.

Is there another Hemo closer to you?

Yes it is much slower now. And actually, I had most of the side effects they speak of my first several times that I got it only no one had died back then and it was too new to have a much patient history. Which also worries me with the new stuff. Only an Oncologist here and he also promoted watchful waiting when I went many years ago to him. He did not want to do winrho.
What do you do?

I am in remission now. Before that, I used Prednisone countless times, Win-Rho (didn't work), Danazol and Rituxan. I did have some nasty side effects from Rituxan but haven't had to treat since I last used it nine years ago.

I have been on steroids constantly since then for another autoimmune disorder, so I'm not sure if that is contributing to the normal counts or not. The dose is between 10 mg's and 15 mg's, so not a very high dose.

I'm not catching whether you currently have a dangerously low count and therefore, a need to immediately treat.

I wonder if you're familiar with the new TPO agonist drugs. NPlate is an injection done at an MD's office weekly, so that's probably not an option. But Promacta is a daily pill you could take at home. Side effects for both are minimal and the success rates are 80% or so.

I understand your opposition to prednisone and splenectomy. I was within a hair's breadth of having Rituxan scheduled in spring of 2014 when I chickened out and cancelled. I don't condemn it outright. I've seen many people here who it helped. I just decided it wasn't for me.

Thank you for the two treatments mentioned. I will read up on them and see if either might be a fit should I need to make a different choice.No I am not in any immediate danger, I just want to be as informed as I can before I consult for a last time with my Doc who is leaving so I can be informed if she does recommend other treatments. As long as I have been with her we have agreed the winrho was a good option for me. After the interim Doc gave me such a hard time with the winrho I didn't know if across the board all Hematologists were going to start nixing it. This site was my lifeline during my danger time many years ago. I have found my way to a relatively healthy existence with my ITP and it would be nice to keep it this way!! THANK YOU!

It sounds like you have had and are still having a rough go of it. The Prednisone is a love/hate relationship isn't it? It is vital at some points, and once you get far into it, you almost have to keep it going.. I hope things stay quiet for you on your current course of treatment. It must have been a blow to find you had a second autoimmune disorder. Thank you so much for answering. Stay strong!

The new drugs, the TPOs, Nplate and Promacta (Revolade in Europe and UK) are designed to keep the count at somewhere around 50, so if that is not high enough to stop you feeling tired then they aren't going to be the drug for you.

The other type of drugs would be the immunosuppressants, the steroid sparing drugs, mainly CellCept (mycophenolate) and Imuran (azathioprine). Some people use them for years without problems, others have side effects like nausea that they can't cope with. Might be worth a go though.

cmszczer wrote: It sounds like you have had and are still having a rough go of it. The Prednisone is a love/hate relationship isn't it? It is vital at some points, and once you get far into it, you almost have to keep it going..

I no longer have a hate relationship with steroids, I LOVE them. We get along very well together for the most part.

Win-Rho is still used but not nearly as much as it had been. Many doctors are not suggesting it these days.