Possibly out of remission after just a few months

[annekat]

I'm so sorry, Katrina. I agree with everyone, you need to get RTX. To me your post didn't say that anyone had suggested putting you back on CTX, just that you were dreading "the talk".... it is normal to dread the unknown sometimes. I'm sure that since you have seen Dr. Seo, and if your local docs are in touch with him, then the right choice will be made not to put you back on CTX and getting you started on RTX. This may happen to me someday, too, and since I have never taken RTX, I will likely have some anxieties about it no matter what. This is human nature. Best of luck, and let us know what happens.

[Debbie C]

Katrina,how big is the mass they found. I have 2 small mm size nodles that they are not worried about,in fact I don't need to get another scan until Sept. But mine will come and go and my one dr. said people can get nodules over nothing. Maybe they just need to up the pred and definatelly no more ctx. Keep us posted, sorry to hear you are going through so much

[HopeinTN]

Yes, I was only on CTX, and not tried anything else. I’m aware of the bladder issues but I have to trust they know what they are doing. I drank a lot of water during this time and hopefully that added some years to my life.

Correct, I have not been told what the next step is or which drugs. I’m hoping I go in there and they say they made a mistake. Girls got to dream. This is all good info and I will mention RTX if he mentions CTX. We’ll have a stand-off.

Not sure of the size but measured in cm’s. The tricky part here is that I also have Aggressive Fibromatosis, and I see an Oncologist for this. They are very particular about things getting bigger in there. They watched the last one grow and grow over 15 months and it got so much bigger that I lost a pretty substantial section of three ribs the get close to a clear margin. I lost a 4x4cm section of ribs 5-7 and fractures to 4 and 8.

It may be Weg’s since the results say Vasculitis. The pain from the fluid build-up and pleurisy are enough to make me want to scream regularly. It seems like cruel and unusual punishment. It stinks and I realize others have it far worse. That I don’t feel crappy on top of being in constant pain, is a miracle in itself.

Thanks gang!

[HopeinTN]

My doc emailed me and says that the labs and in connection with the biopsy results, show that my disease is active. I will meet with him on 3/04 to discuss RTX treatments. I will research some posts on RTX as I have no idea what to expect. Will it make me feel as bad as the CTX did?

Oh well, let's get this party started and get me back on track.

Thanks gang!

[Pete]

I will research some posts on RTX as I have no idea what to expect. Will it make me feel as bad as the CTX did?

For most people, rtx infusions are almost a non-event. I had two back in October 2013 and was on the road driving to vacation getaways with no problems. When you arrive at the infusion center, you will probably first be given an IV dose of solumedrol followed by benadryl. Since I take claritin every day, they did not give me the benadryl. The first infusion will start very slowly. My first infusion lasted almost 5 hours. The second one lasted just under 4 as they were able to go faster since I had no reaction during the first one. You should probably take something to read and maybe something to snack on. The infusion center I go to at Ohio State has a private TV with many channels and the nurses gave out snacks (100 calorie packets of cookies) and water.

The nurses will take your vitals every 30 minutes. If you start to feel funny or have hives or shortness of breath, say so right away. They will stop the infusion and deal with your symptoms immediately. Once you're stabilized, they'll start again, only more slowly.

Most people on this forum have little or no reaction. I was a little tired for about 24 hours afterward, but I was able to do normal activities without difficulty.

I think one of the big concerns with rtx is the cost. The list price is between $15 and $20K. Since rtx is now a recognized treatment for wegs, your insurance company will probably pay for it. Between Medicare and my supplement, the two infusions cost me a total of $40 out of pocket. Genentech can also provide financial assistance if needed.

Good luck!!

[KimH]

I tolerated the RTX well. I was on CTX for about 8 months. A bit longer than I should have. I was approved by my insurance for four weekly treatments of RTX. I didn't get the benadryl because I am sensative to it but I did get 125 mg of solumedrol and 2 Tylenol. My bp did get a bit low but the nurse checked my vitals every 15 minutes and then every half hour. The first infusion is done very slowly to see how your body tolerates the drug. The rest do go faster. It does take a few months to kick in. I just had my last treatment on February 7. Other than a lung nodule my wegs is in my sinuses. I was not feeling too bad at the time of the treatment. I hope your doctor will get you started on the RTX so you can get some pain relief.

[HopeinTN]

Great info. I was on CTX for 25 months and in remission the last 4. Surely this will work. I have had a crazy reaction to Benadryl in the past so thanks for mentioning that so I can tell them. My Weg's is in my lung and compromised by Aggressive Fibromatosis. I have great insurance but a high deductible and out of pocket max. I think I may be close to meeting the out of pocket max of $3000.00 already. I usually hit it around April, but early this year. Maybe thsi means the insurance won't think twice about approving it.

Thanks guys.

[Alysia]

Hi Katrina,
I didn't have any reaction to rtx, but lowering of BP during the IV. it is doing miracles. please read this: http://www.wegeners-granulomatosis.c...s-my-list.html
good luck and please update us.

[marylz]

Hi. I had my 1st RTX infusion today and it went well. I actually slept through much of it due to the benedyrl they gave me.. I was there for about 5 hours and they came and checked my bp and general well-being every 20 min or so. After the sleepiness wore of, I felt fine. we will see what the nextfew days bring, I go on tuesdays for 3 more weeks and then get a break for 6 months. Good luck with your treatments- hopefully the docs will choose RTX.

[kieshara]

GEE i do actualy feel healthy if i read your story, that is so sad that you had to go through this. I do hope for a recover i do think of you here from the point of Africa. good luck Ellen