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.:smile1:

[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.

[drz]

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.

Infections always raise my CRP levels. If they last along time then my ESR levels also go up.

[BrianR]

Hi Nikki.

First of all, good news on the RTX. It works. Your doc will advise you on what happens next given that you've come down with a bug. Have you consulted yet. Try not to be disappointed if the infusion is delayed. Infections and RTX do not make good bed mates. Marta just had her first of two infusions the day before yesterday. She had just gotten over a chest cold that she contracted about 10 days earlier so she had enough time to get through the cold before the drip. Her infusion went fine other than a bit of an allergic reaction during which they stopped the infusion for a period of time. As others have mentioned, most people have no issues but you should plan on having someone with you to drive because everyone reacts differently to some degree. I had to leave Marta in Edmonton for a few days (she is still there) and I came home with Hana. Her legs for some reason got crazy sore; sore enough that she actually outwardly exhibited pain and that seldom, if ever, happens.

Now that you are on the road to RTX things are going to get a whole lot better! Hang in there!

Brian

[gilders]

Nikki, so sorry to hear you've picked up a bug/infection. I wouldn't advise RTX until your infection is sorted.
I think I previously mentioned that everything has been great with my 7 or 8 infusions. Well I had my last infusion on Friday and I've also got a chest infection. This could not have come at a worse time. I'm obviously immunosuppressed at the moment, but my main concern is my kidneys. Even a mild infection can push my kidneys over the edge.
The GP wanted to admit me into hospital this morning, but I persuaded her to let me have the blood tests at the hospital, come home and return to see her tomorrow morning. She agreed to this on condition that I admit myself if I deteriorate in the slightest. I believe, so long as I'm stable, home is a safer bug free zone compared to hospital.
She also had to do a calculated risk with the meds as they can cause renal failure, but the risk is likely to be less than the risk of an out of control infection. The meds also interfere with my warfarin by increasing its potency. My INR level is already at the highest point in my range, so this needs to be kept a close eye on as I've previously had extreme bruising and bleeding.

If all that wasn't difficult enough to work around, I'm due to fly to Portugal in 4 days. This will probably be my last holiday for a long time as I won't travel abroad until at least 12 months after transplant. I need this holiday after a terrible few months including my health, my mum's cancer, losing my aunty and losing dog.

[NikkiNicole]

I'm on the downhill slope of the chest whatever it was. I feel a little run down but I am back at work and have been for three days. Stuff's moving out too for as much as I am coughing. I hope I would be fine.
What would happen if I had it while having such a cold?

[gilders]

Viral infections like the common cold cause inflammation which can on rare occasions lead to organ damage.

Having flu, for example, increases by a third the risk of a heart attack. Secondary complications such as bacterial infection can also be potentially fatal.
Add immunosuppression which is a result of RTX (or most other Wegs treatment ) and the risk of a mild infection becoming deadly is increased.

Glad to hear your infection seems to be improving :thumbsup:
I'm certainly no worse with my chest infection and maybe have improved a little.

[Alysia]

I hope that both of you are getting better, Pete & Nikki. Sending many prayers to you.
We can know if we are able to fight an infection according to the blood test of Igg. If it is below the normal then we cant fight it. My beautiful Phil had it very low, almost zero. Then he got Igiv which brought his Igg up to the notmal.
Nikki, I guess it will also be better to check your wbc before tomorow, to make sure it is mormal.
Good luck and please update us.
Gilders, please let us know how you are doing.. I hope you can enjoy your vacation in Portugal and come back as good as new.

[gilders]

Good news. Blood results were good - crp and white blood count good. Kidneys also coping with eGFR stable.
Just need to make sure my INR isn't out of control in tomorrow's test. All looks like I'll be off to Portugal on Monday, just need to get INR checked whilst over there and liase with my local anticoagulation clinic. :rolleyes1:

[Alysia]

Good news. Blood results were good - crp and white blood count good. Kidneys also coping with eGFR stable.
Just need to make sure my INR isn't out of control in tomorrow's test. All looks like I'll be off to Portugal on Monday, just need to get INR checked whilst over there and liase with my local anticoagulation clinic. :rolleyes1:

Great news. Thanks for sharing. Keeping you in my daily prayers ♡ please update us....

[NikkiNicole]

My WBCs were fantastic when my chest infection was in full form, my CRP was the only test that was WAY off the charts. WBCs were totally normal. So I think I would be just fine to go ahead with it all.
I am a wee bit nervous, just because of all the potential side effects. You know?

[Pete]

You got this!! No sweat!!