New and Scared

[Christrd]

lol I love 5 min away.....you know what I ment.

[JanW]

That's so great for you. Glad you put a pic up too!

[Sangye]

Christian, you can expect to have 3 drugs administered with each rtx infusion.
1) IV pred-- helps prevent/ minimize allergic reaction
2) Tylenol-- to prevent a fever
3) Benedryl-- to prevent allergic reaction

Sometimes they don't give the Benedryl, and sometimes if you tolerate the first infusion fine they don't give benedryl or tylenol in the next infusions. They didn't give me tylenol and I never spiked a fever.

The pred dose is fairly high-- usually about 100mg solumedrol (equiv 150mg oral pred). You'll probably feel amped up within an hour or so. Benedryl knocks you out for an hour or two.

Rtx is a genetically-engineered antibody, so there's always a chance of allergic reaction to it. The chance is quite low, especially with the pred on board. The infusion center will monitor you throughout the IV.

My Wegs doc was willing to lower the pred dose a bit and eliminate the benedryl, but I don't want to mess with a good thing. It worked, and I'll just tough out the side effects.

[Terri]

Sorry to hear you've had some bad experiences to start already just with the Dr's.
I'm glad you found this site. You will get lots of help here. Believe me when I say these people know how to make you feel better. They've done wonders for me. I don't always post a comment , but every night I check out what is being said. I don't want to miss anything! lol
5 minutes from Long Beach?
aahh Christian, you will be the envy of this neighborhood. I hope you will be able to go to the smyposium.
That would be GREAT!
I hope to go some year it is a little closer to my home.
Good luck with your treatments and I hope you you are feeling better.

[elephant]

Welcome Christian, glad your getting those treatments soon. I have heard great things about this drug, and it is very promising for us Wegeners people.

[wgrebel]

You are not alone. I had to switch doctors also. The doctor who originally diagnosed me did not seem pay as much attention to me after I got out of the HP. I have a wondeful "team" of rheumatolgists who work with me now and I have made some improvements. I am down to 40 mg a day of prednisone and 150 mg of Cytoxan. Keep on those doctors, the aforementioned doc who diagnosed me also forgot to call in my cytoxan prescription when I left the HP. Keep plugging away to find the right doctor and my wife and I will pray for you.

[Christrd]

Thank you so much Sangye, your just full of information. Im so happy to have found this site. You put my mind at ease.
Terry, elephant, and wgrebel, thank you for your warm hello.
It seems like we went through the same ordeal wgrebel. Im at 30 mg of prednisone now. Dr. cut it in half. I hope to loose this weight, or moon face as I seen it called here B4 my wedding. Im getting merried this april to the monkey on my back (girl on pic) So I would like to be healthy by then.
Once again. Thank you all for your input and thank you for posting on this site. Dont feel so alone anymore.

[elephant]

Congrats Chris, you will feel good by April. The moon face started to disappear when I was down to 10 mg of Prednisone. Just be careful about weaning down too fast on the Prednisone. If you wean to fast the WG can flare. Usually if you were on 30 mg of Prednisone the decrease you to 20 mg of prednisone for two weeks and then decrease you to 17 1/2 for two weeks and 15 mg for two weeks, then 12 1/2 for two weeks, then 10 mg for two weeks. Then after than they usually/sometimes go down 1 mg a month. Just see how you feel and if you think a flare is happening they might have to adjust the prednisone and other immunosuppressant drugs. I wish you and your soon to be wife the best!

[Sangye]

Glad I can help, Christian. I hope you'll be much better by April. Try to keep your stress level as low as possible and take each day as it comes. Hard to do on pred, because it tells your body and mind "Panic!"

Elephant knows the safe way to taper pred. My original doc (not Wegs specialist) tapered me too fast at the end and the Wegs fire burned on...

[Col 23]

Hi Chris
Im also new to the Weggie club and I felt just like you very alone, worried and isolated with no real knowledge of WG. I found myself getting on the Web and reading everything which was good and bad before I could get an understanding of anything and understand where I was at. Thanks to this support group (although Ive only posted more recently) their experiences have and are helping me to get my head around it.

Sounds like you need the docs to answer a few questions. I think it was Andrew Administrator who advised that to write down your questions and dont be afraid to ask anything. Also tell them everything that is wrong with you sometimes the small ailments are the important ones. Also not sure what medication your on but if your on high dose of Steriods I found that I lost the plot alot and had melt downs and walked out of appointments, cried alot and was very moody, sometimes I wasnt communicating very well. Apparently its a good idea to take a advocate (friend, relative or partner with you to doctors appointments) and hey if your not happy with your treatment ask them about their experience and who they are consulting with. Get them to stick to the scientific management (if you can). When they ask how your feeling from my experience they are trying to see if its related to sideaffects of medication. No sure what your story is but just letting you know what's happenede to me. Hope this is helpful
Sorry I still dont know enough but this is my recent experience. Col 23