Retuxin in >80yr old person...questions

My mother(82yrs) has had ITP for some time and she chose not to treat it. She has no bleeding or bruising. Her count avgs 9 to 18K and her hemo dr says they are large platelets. She has general good health and just takes a blood pressure med.

Now she requires a hip replacement, her pain is getting worse by the day. So she has started
treatment. In Sept 2012 she started Retuxin @ a low dosage, I think it was 100 per week for 4 wks. The dr saw a new report that people were getting the same results with a lower dosage. Her first blood work came back at 30K so we thought this might be it, plus she had no side
effects. However, the count went down from there back to her orig. avg.

The dr now wants to try 700 per week for 4 weeks. Has anyone had experience with older patients and repeat Retuxin treatments? Or just repeat treatments?

Also, is there a spot recommend doctors? This is our 2nd Hemo dr and he is amazing. He will take an hour explaining things and returns her calls and mine personally. We travel 2 hours to see him, but it's well worth the trip. We are in WI.

Thank you to all who take their time to respond to these posts. Your experience to so very helpful.

Maureen

Hi Maureen. The doctor seems pretty up to date since he suggested the lower dose Rituxan. Many hemo's do not know about that. He's right, studies have shown that a lower dose can be just as effective as the normal dose.

I have not seen any evidence that a repeat of Rituxan at a higher dose will work if it didn't work at the lower dose. That doesn't mean that you shouldn't try it, I would just hate to see it end up being a waste of time. Does she respond to IVIG? That would give a shorter boost of counts but could work in a surgery situation.

Good luck with your decision. Sounds like you have a good doctor there!

Maureen,

I just wanted to mention that when I was at the 2012 ITP conference, they did mention some special treatment plans to use for surgery. I can't remember what they all were right at this moment (would have to look them up), but it might have been something like using Nplate for a certain amount of days. They had a few different remedies. I'm getting ready to leave right now, but will look for them tomorrow.

Dee Dee

Sandi...she has only had Retuxin, no other treatments. We felt as long as she was doing
fine why rock the boat at her age. We wouldn't have done any treatment if it weren't for her hip.

I think the doctor wanted to try the higher dosage for better long term results instead doing something just for surgery. He did mention the IVIG, but seemed to want to try the Retuxin again. He had never done the low dose prior and now he was kicking himself.

A side note: I wrote to Dr Oz requesting a segment on ITP and noted the bullying that goes on between some doctors and ITP patients. Her first doctor said she had to decide between treatment A,B,C, or D. If she didn't want to do one of one those he couldn't help her. She was in tears after that and he is well known at a major hospital. My concern is for people who go in alone and are afraid then get treated like that. Her doctor now will go on for an hour on posiblities and be KIND if she wants to think about what he said. As you can tell I have a great deal of respect for the why he handles his patients and his knowledge of ITP. I wish I could clone him to other specialties!!
Thank you again...M

Maureen,
You are right about the doctors. I went through the same thing when I was in the hospital in 2010. It was very upsetting having a doctor tell me I had to do just what they said. I stood my ground and did what I wanted. I did let them give me the IVIG and Decadron.

I looked this morning for the Platelet Newsletter with notes about where it mentioned how to control bleeding. I couldn't find the exact one I was looking for (and, my notes aren't very good...the spelling in wrong ). I wrote down the following: 1) FVLLa -- limit the use--used for hemophilliacs. 2) Lystidu -- Useful for bleeding; GI, vaginal bleeding. 3) Quik Clot -- Surgically & topicallly; good for severe bleeding. 3) Synthocytes are used also.

They also mentioned Nonia -- in capsules. I also read that they use Tranexamic Acid to control bleeding. And, the last which came from another newletter is "New Sponge Coating"; these are used in operating rooms and in emergencies.

Hope some of these ides might get you searching for a back-up source for your Mother.
Good luck to both of you.

Dee Dee

I think that most people with any medical condition have the same problem with doctors. They can either be good ones or not so good ones. I have the same hemo that I had in 1998 when I was diagnosed. I've been through 5 Rheumatologists.

I'm glad that you have a very good one...one to hang onto. I am curious to see if a higher dose would work better because all of the data so far suggests that the lower dose is all that is needed. I don't think he should be kicking himself; he was trying to spare your Mom some of the toxicity and possible side effects of the drug.

I will post on how she does weekly.

Thank you to all.

I will post on how she does weekly. She starts 1/15.

Maureen

Maureen,
Good luck to you and your Mom; and try not to worry too much.

Dee Dee

My orthopedic surgeon wanted my platelets in the 70s or higher before my knee replacement in November. In order to achieve that, my hema upped my prednisone to 30 mg/day for a few days before the surgery. It's a good idea if the surgeon and the hematologist can communicate. I was grateful that my surgeon didn't demand "normal" platelet numbers before the surgery. Incidentally, whenever I have had major surgery, my platelets have soared AFTER the surgery for up to three months. It will be interesting to see what happens to your mom's platelets after the surgery. My theory is that my liver (since I have no spleen) gets so confused by a big shock to my system that it forgets to destroy my platelets for a while!

Karen,
You are lucky that prednisone works to bring up your platelet count. As for me, when I am having a big problem with my platelets, prednisone, IVIG...nothing will work for a while. Then, after a while they've been able to bring them back up. So, it was interesting at the conference that the doctors did mention some other remedies to use in an emergency.

There are quite a few like you whose platelets don't completely crash. It's a lot easier to deal with as long as the symptoms are under control.