It's Official!!!! RTX

[NikkiNicole]

June 3rd, 2016 at 9am, I will be starting my first round of RTX.

I am hopeful this helps. I'm also trying to plan.

My husband wants to go out of town that weekend (yes ... I know ... he's irritated that I might need him to stay home). Should I let him go? Will I be OK at home by myself? Should I have someone with me? Should I plan to be off work the next day?

How did you all feel after your first? I feel like since I am not as bad off as some people, I will feel worse after my first infusion.

Send me any tips!

[MaxD]

You should be fine. After my first infusion, I slept the rest of the day - the combo of benadryl and solumedrol made me drowsy and alert and totally exhausted. The next morning I was fine. I had no noticeable reaction to the RTX, just a mild sniffly feeling towards the end of the infusion, but only briefly. Reactions to RTX are rare, happen during the infusion and you will be monitored for those.

Be patient with the RTX - it works, but no overnight changes! All the best!

[Alysia]

Congratulations Nikki. Its time for rtx.

In my case, I try not to work in the day after. I feel exhausted. I just need to rest in bed. It is important to let your body handle it all while resting. Please take even few days off work.

You will also get before the rtx an infusion of 125ml steroids IV to prevent reactions. So you are going to be highly immune compromised. Dr. Phil always said to avoid the croud after rtx in the first month.

You might not be able to drive right after if they will give you some meds to prevent allergy. You might be sleepy. So its better to have someone to drive you home.

I have my blood pressure dropping down so I bring chocolate with me, coffee, and I drink a lot of water.

There should not be any special events but because its the first time, in my opinion it is better not to be alone.

Just take it as a forced vacation and try to enjoy being away from work. Enjoy the thought of this golden fluid in your veins, healing you.

Sending many prayers. Please update us.

[Pete]

Hi Nikki,

After rtx, I'm a little tired the next day. Nothing that interferes with normal activity, though.

Because I take 10 mg of loratidiene each day, I never got Benadryl and the resulting drowsiness.

Plan on the infusion taking at least four hours. Take something to read or stream on your iPad. Also something to drink and snack on is good. I support Alysia's recommendation of chocolate!! ��

[lesa]

I echo what Pete said. Nothing really got in my way the next day. I did take the next day off just to relax. For the first infusion I had someone take me and pick me up but after that I took myself there and drove home after as well.
For my first infusion I did not bring anything and I was there for 7 hours! Nobody told me I would need lunch etc. The first one is the longest, they will turn up the speed for the next infusions. I had a brief allergic reaction where my throat got scratchy so they stopped the infusion and added more Benadryl. Don't panic if that happens, once they started again I never had the reaction again. Bring lunch, a big cup for water and treats like others have mentioned...whatever will make you the most comfortable. I also brought my laptop with earphones and watched movies (which I always fell asleep for). Good luck. I am sure in some time you will be feeling much better!

[MikeG-2012]

I have similar results of like the rest of folks. Only thing is that a couple days later, I crash--big time! I am sleepy for most of the day of the infusion, and am hopped up for another day from the IV pred. So when I crash, I think it is my body telling me that I need to slow down now and rest a little.

I'll also be getting one that day at about the same time! Happy birthday present to myself from my insurance carrier! (-8

I guess I am having mine done at a great place. They give me an inpatient lunch menu. Last time, I had a hot turkey sandwich with mashed potatoes and gravy, a tossed salad, desert, and any and as many coke products that I can drink. They always ask me if I've had breakfast, so I think if I said no, the'd feed me breakfast too. I pack my laptop and stream something. Last time, I caught up on a couple episodes of Colditz, that someone here mentioned when the subject of Hogan's Heros went off topic. (-8

If your husband is upset that he has to take you too and from the infusion, tell him to be glad he is taking you. If you don't have the RTX, he might not get the opportunity to take you anywhere if the disease progresses and is terminal... I know that life SUCKS with this disease and that making plans sometimes is impossible, and that is very hard for family especially. That is what I hate about it the most. My new normal changes from week to week, month to month--there's no set normal anymore. I miss that!

Get well Nikki! I'll be thinking of you at 9:00 central time!

[drz]

If you get Benadryl or other additives that are often given with IV RTX then you have some one else drive you home where you will probably sleep most of the time for day or two if you are free to do so. For your job I think you should take the next day off too and rest up. You need it and deserve it big time.

[blu4runner]

Hope the RTX work for you as well. It has never given me a problem. After each infusion I drive the 4 hour trip home and after my first infusion I drove 8 hours to the beach the next day. My biggest disappointment was that it seemed it took several months to feel the positive results from the RTX. But no regrets it has done wonders for me. Bust wishes to you for success!!!

[gilders]

I would definitely not drive myself home after the infusion. The combination of steroids and IV anti-histamines will have you feeling VERY drowsy and then VERY hyper. This usually carries on through the night. Therefore you will most likely be very tired the next day more from poor sleep than the actual meds.
I wouldn't say you definitely need someone at home, but it's much more pleasant if you do, especially during the tired periods.

I had my latest infusion 2 days ago and had a bit of nausea yesterday morning. Not bad enough to prevent someone from working and didn't last long.
Considering you're having the infusion on a Friday, I would try to treat myself to a weekend off work.

My experience of RTX has all been positive except for trouble with cannulas (not RTX's fault) and my kidney function dropping to critical level (couldn't say if different treatment would have been better for my kidneys).

[NikkiNicole]

I had all my labs done in preparation for the RTX on Friday but ... I have fallen ill w/ a massive chest/head whatever bug. I had my CRP test done and it is OFF THE CHARTS!!!!!!!!!! Is that from whatever bug I am fighting? It hasn't been that high in a LONG time. Like .... since WAY back in the beginning. But, my mind is telling me it's because I am sick. Like, cold sick, not Wegener's sick.
What do my wise Weggies think??
My doc hasn't seen the results yet because of the holiday weekend.