Thanks aewaustin. If it were me I would insist on an explanation along with the decision.
Thanks aewaustin. If it were me I would insist on an explanation along with the decision.
me2 I will, but I totally trust whatever Dr. Langford says, she is one of the top Wegs docs so even if this is her personal preference I would go with that decision. I overrode them on the CTX because I knew it was the right thing, and it was. With RTX I think that the 2 would be ok for me for where I am now, but I don't have enough of a feel for it to dispute what she says and I think that 4 is probably playing things safer IMHO. I think what they are going to come back with is that X is better because that is what she believes in. There just are not enough studies out to point to one over another I think... But either way I will post what I hear and the explanation I get
From your initial post it sounded like your doctor was not explaining anything or guiding a decision, just sort of leaving it all up to you. That's the reason for my answer. It sounds crazy, but we have had that happen to many members whose doctors lack expertise, and they put the decision completely on the patient.
It is absolutely necessary for you to be involved in the decision making. I have always stressed that in my posts. I don't know how people misinterpreted what I said as going belly up and letting the doctor make every decision.
My doctor at CC works with Dr Langsford. She is having me do the 2 RTX instead of 4 RTX, she stated that they are having great results from the 2 infusions. I'm in the middle of a flare and have new growth of WG in the lungs. I have been on MTX,Imuran,CTX and now Cellcept since Sept 2010,there has been inprovement in some of the sites in my lungs,but not enough. I have had to up my preds from 10mg to 30mg in the last month, because of a great increase in inflammation and all over joint pain. I waiting to be scheduled because of insurance issues. I've been trying to study about side effects and wondering how long it will take to feel maybe normal. Does anybody have any comments on how it has made you feel right after the infusions? Just kind of worrisome about how long I might be down. Thanks for any info.
Jana
Jaha - after the first infusion i felt tired and warn out on the day but other than that no adverse reactions.
After the second i felt really very tired and took a week off work to rest. Glad i did.
My involvement is sinuses and i havent seen much improvement to my symptoms and dont feel much different in myself apart from i bruise more easily these days.
"I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack
Sangye - Well my doctor wanted me to do the 4 because that has been standard, but I thought about the 2 and wanted to research some before I brought that up to her.
Jaha - Good info! I really want the 2 to be my protocol, if it works, just makes life easier with work if I am doing it every six months. And after the first one I was really tired, but after the other three I went walking three miles after (they were nice sunny days and was so excited to be feeling better). Not sure if I am normal, probably not, but I had amazing results just within 24 hours and within a week it was life changing. I could barely function and had no appetite before, and had only driven about 1/4 mile from home for the two weeks before the RTX. The day after I wanted pizza and two days after I went to three stores shopping. A week after I went from only showering every few days because it was too much effort to running the majority of 3 miles, I was a runner/triathlete before getting sick. So I love RTX, but I just don't think that my results were normal so don't get too excited.
Hello! I had 4 every Wednesday in the Month of May 2011. My doc wants me to do another round sometime not sure if it will be 2 or 4. I felt run down the day of the infusion and the day after but other than that I was fine. I am also on 20 mg MXT weekly, off of Pred just recently.
My doctor always tells me what my options are and then asks how I feel about them. He lets me be part of my treatment. I trust him and feel that he is genuinely looking out for my best interest and safety. He coordinates with many different departments and he also asks questions which I find quite refreshing, he doesn't pretend to know everything. When I tell him something is bothering me he investigates and doesn't just ignore it or tell me that I am wrong.
I feel the best part of my treatment is having the great people working to not only save my life but to give me the best quality of life while living with WG. I think I went for over 10 years without being diagnosed so this is very important to me to have people that listen. The best advice I can give anyone is that if you don't feel your "team" is working for you find a new one!
I read somewhere, and I am trying to find where, that 2 infusions were Mayo's preference and 4 was either Clevelands or Chapel Hill but I can't remember which. I will try to find that article and pass along it was interesting. I do not think that they really know what is best and on top of that everyone is different in how they respond.
As for the safety of the Rituxan my Hemotologist told me he has been using Rituxan for many many years for blood diseases and has never seen any bad long term side effects from it, he feels that it is a good thing for me and that I shouldn't worry about the future, not like Cytoxan.
Hope everyone is having a great day today!! Take care...........
I've just been thru one regiment -- 4x4. Next month (6 months after dx), I'll be taking Rtx treatments 2x2 based on current trends and usage. (This matches with I've read online and heard from many of you). I was very tired the day of infusion and probably the day after as well. But after the 4 weeks, I felt good except for the crazy side effects of the high dose of prednisone. However, all the docs were not very surprised that I'd contracted pneumonia just a couple of weeks after my last treatment. Seems as though I was most susceptible at that time. Not sure I totally understood, but filed it away for "beware" next time. We will see in a few weeks.
Well I had my first iv today, of four... Dr. Langford said that the 4 is preferred over 2 because there is just not enough research to show that 2 is as effective. Also insurance companies cover 4 and my doc said they did not want to risk being turned down. This is all my impression of what the doc said, but she said it more eloquently with a few more facts. So I am doing four. I got home and am finishing my work day, don't feel any better/worse than other days so that is good, but hoping in a week or so I will start feeling better than I have in awhile. Thanks everyone for sharing! So appreciate it
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