Newly Diagnosed and Aggressive Treatment

Hello All!

First, thank you all for sharing your stories and experiences.

I was diagnosed Dec 2011. Heavy period, bruising, petechiae, counts of 7. Three days in the hospital, two IVIG infusions, and discharged with counts at 30 with 50 mg prednisone. Over the next week my counts peaked at 150 and ended at 11.

January, my oncologist/hematologist was concerned Prednisone did not hold me and started me on Rituximab therapy. He also increased my Steroids to 70 mg. My counts had dropped to 11, so I had two IVIG infusions that weekend. My counts peaked at 150 over the next two weeks.

I was hospitalized again later in the month. A viral infection caused a mild fever and severe low blood pressure, enough to make me pass out. In the hospital, counts were at 7. Discharged after two IVIG infusions and third Rituxin.

After the last Rituxan infusion and they started my taper to 50 mg. I had been having very bad reactions to the steriods at 70 mg. My counts were at 447, but I realize this is very likely the combination of the Rituxan and steroids.

I saw another hematologist for a second opinion as I now understand more about this. He did agree that the treatment was very aggressive and that although there is a response to the treatment said we should watch to see what happens as I am tapered off of the steroids over the next six to eight weeks. Both hematologists said that they would consider splenectomy next for me.

I welcome any and all feedback and suggestions regarding my situation.

Hello - I'm glad you found us. I do think the treatments were a bit aggressive because you were pounded with so many at once. It really isn't an emergency to get to normal counts.

My suggestion right now is to do nothing but monitor your counts and continue the Prednisone taper. It's too soon to discuss splenectomy. It's possible that Rituxan has caused a remission and you could stay there for quite a while.

Most people have the same side effects with Prednisone that you did. I had the same problems....everyone hates it.

I can't help you with the referral but there are other people from that area that could.

Thank you Sandi. This past 6 weeks has all been so overwhelming and I am so glad that I found you as well.

Prior to this in excellent health. I had annual doctor visits and only took aspirin on occasion prior to this. So the hospital stays and being thrown into the medical system really threw me off balance!

Not to mention all the emotional ups and downs with watching counts and uncertainty about my diagnosis and just wanting to get it behind me.

I am hopeful for a remission, but now have concerns about all the treatments at once, especially with Rituximab. Has anyone been treated with both Rituximab and Steroids at the same time? I am wondering if that is what has been causing the wild swings in my blood pressure and all the side effects.

www.pdsa.org/join-the-community/local-groups/item/316.html

That is the page for the Chicagoland ITP Support Group - on that page is given the contact email address and also their website address. You might want to email and ask about a hematologist in the northern Chicago area.

Here is the treatment page for conventional treatments
www.pdsa.org/treatments/conventional.html

Here is the treatment page for complimentary treatments
www.pdsa.org/treatments/complementary.html

Good luck!

Yes, some people have used Prednisone and Rituxan at the same time. Once you start Prednisone, you have to taper off even if you start a new treatment. They can overlap. Prednisone can cause blood pressure to rise and has a lot of nasty side effects that go with it. Some of the side effects go away as the dose is lowered, but some might get worse for a while. It's not fun, but you will get through it.

Thank you so much Sandi. This is all still so new to me and it is so confusing and scary.

Having had no prior major illnesses and relatively good health, I put trust in my doctor when I was first diagnosed.

Skadi:

It's okay to follow your doctors advice. You have to trust him. When you are newly diagnosed, you don't have much choice there.

I think as time goes on, nearly all of us have tried to become a part of the decision-making once we learned more. It gives you a sense of control, and you can really try to do what suits you better. It's great to have a doctor who presents the options and makes you feel like you have choices. If you don't have a doctor like that, you can find one. They are out there.

Since this morning I have spent the entire time reading the treatments section of this group and I now feel much more relieved and confident. It sounds as though I may have been saved many frustrating months of searching before getting to where I am now.

Thank you so much for the responses and help.

Skadi:

I would say it was pretty early in the game for Rituxan, but as you said, you did end up saving yourself months of trying other things and having ups and downs. The other options are not very appealing either. They can either take a long time to work or a long time to see that they won't work. They also have side effects. I suppose Win-Rho may have been an option, but it doesn't seem to be offered much these days.

When I was diagnosed, there were few choices. The only options were Prednisone, Decadron (steroid), Win-Rho, IVIG, splenectomy and Vincristine (Chemo). Win-Rho didn't work for me, I thought IVIG was a waste of time....wouldn't go there, would not consider splenectomy or Vincristine, so all I had left were the steroids. I spent years on and off and up and down. At one point I was living in the 20's and quite content with that - just wanted to avoid steroids. That's when Rituxan came along. That did it for me. Would I have done that earlier if it were available and saved myself years of steroids? In hindsight, in your situation (not having any serious side effects), yes.

If you've achieved normal counts in six weeks and do maintain that, you're doing great. Sounds like you went through a lot in the beginning, but the worst of it could be over now (once you're off of Prednisone!)

If you're up for reading, here's my usual link.. the latest international guidelines.. I'm lucky because my haema is the first named there so he believes in and follows the guidelines.

bloodjournal.hematologylibrary.org/content/115/2/168.full

Ann thank you! This is very helpful. I have already read some of the key parts and this is going with me to the hematologist if I need additional therapies.

Also on an unrelated post I saw that you had limited coffee from your diet and I also read that is one of the foods to avoid. That may have been contributing to my bleeding symptoms at low counts. I am going to eliminate coffee and if my counts drop into the teens and tens again, it will be interesting to see if I get such obvious bleeding.

That won't have been me cutting out coffee although I do drink decaff because caffeine makes me feel weird. I haven't cut anything out of my diet since ITP.. all things in moderation and occasionally to excess for me. I've been vegetarian for many years but for ethical rather than health reasons although I reluctantly still eat dairy because I couldn't live without it.

hi Skadi, Glad to read you are doing better. I am all for second opinions! I stayed with my first hemo too long thinking they were all the same, then found a wonderful hemo that listens and lets me take part in my treatment.
I am very resistant to overly aggressive treatments for ITP- the first thing I read on the Mayo Clinic website was how the treatment can be worse than the disease.

That being said, I actually see what your doctor was doing getting you on Rituxin quickly, he was concerned with the counts below 10. I was on higher doses of Prednisone for 8 months before I tried Rituxin and had terrible side effects, some likely permanent like thin skin. It did get my counts up but I couldn't taper without a crash.

Neither hemo I went to would prescribe Win-Rho or other drugs because of their side effects. Both strongly suggested splenectomy, which I'm glad I refused. Rituxin made it possible for me to taper prednisone and kept me at a low but safe count for 6 mos. honestly, if I were to do it over I would have not stayed on high doses of Prednisone so long, and not waited so long to try Rituxin.

I am off caffeine but didn't know coffee affected platelets. you probably know to not take Omega 3 vitamins(i had to learn from experience), aspirin, ibuprophen. Also my hemo warned me against herbs from the willow family or salicylates.

Sounds like things are getting better. Good luck to you!!

Ann, I don't think I can give it up entirely either. We will see!

Poseymint, thank you for sharing your experiences and encouraging words. They are very comforting. These responses mean so much because they are from people who know because they have been there.

Here you go.. www.ncbi.nlm.nih.gov/pubmed/18439332

Apparently it's not the caffeine in coffee that affects platelet aggregation but something else. In fact I'd rather have less aggregation so that there's less danger of clotting, which worries me more than bleeding at the moment.

Very interesting article on coffee. Thanks for sharing! I can't give up my Starbucks just yet, but when counts get low, if its between no coffee and more drugs, I might. Anyway good information!

Thanks for finding this abstract Ann, it is very interesting. I guess decaf or not doesn't really matter (which is a good thing).

Hello Skadi Welcome to the group. I noticed in your first post that your doctor is an oncologist/hematologist. I think that may be where the rush for treatment may have come from. Being a hematologist he does have excellent knowledge in blood matters, but his first job {for lack of a better word} is in dealing with cancer patients. That's how my doctor was anyway. There were treatments that I had to tell him about, or at least remind him about. Or he didn't know how to pronounce a treatment that he wanted to try because ITP wasn't a priority on his list. Hope that makes sense! And the emergency room doctor!!! What a joke that was! My count was 4 and he just about had a heartache telling me that I needed to sit down and that I MUST be admitted to the hospital. He even lied and said that he talked to my doctor and that's what he wanted. I knew that wasn't true because when my counts were at 1 he didn't have me admitted. I also had the heavy period and bruising but not nose or gum bleeding. I think it all boils down to people not knowing what ITP is, even doctors!

Hi Server, I am kind of getting the same impression. I have seen three doctors so far, and I get different answers to my questions (sometimes wildly different). My experiences in the ER were similar - the doctors and nurses were fantastic but really had no idea about ITP. They were going to infuse platelets but the hematologist I am seeing said do not do it (thankfully) and after reading the stories I know he was on target with that.