preparing for my first RTX

[Alysia]

Hi.
If all get well I will have my first RTX on next wednesday.
what complications can be ?
what do I have to watch out for ?
Is it true that there is life risk in the treatment ?
I read something about brain virus complication which is fatal in 1:25000 cases. do you know any thing about it ?
how it feels like ?
Im afraid Im going to vommit and have diarrhea.
Im afraid my blood presure, which is always low, will go down. I can faint. can I ?
Please tell me everything that can help.
what to take with me ?

I dont sleep well.
a lot of fears.... :scared:
and hope.

thanks.

[drz]

Most people don't have any noticeable reaction. The most common advice is to bring something to read or help you get through the hours it might take. The first one tends to be done a lot slower in case there is any reaction. I usually slept through mine. There are risks of course with any treatment but most people get through it fine or it wouldn't be in widespread use and the now considered the treatment of choice for most severe cases. You will be closely monitored if the people doing this are competent and experienced and you should do fine. Hope it is successful in taming things down for you.

[rebekah]

Hi Alysia,
I just started RTX 2 weeks ago and agree with drz's post above. For some reference: my first infusion took about 7 hours, my second 5 1/2, and the one today took about 4 1/2... I have my last one next Friday; of course the time can vary. The only side effects I had was some chills and slight nausea, but they have warm blankets which helped... I was fine during the infusion today and had no side effects so I didn't need the blankets. If you feel anything during the treatment let the nurses know, they should be constantly monitoring you, but if you don't say something they won't know how you're feeling. I usually take Benadryl before and nap through part of it so you could try that. I also take a book and music to listen to, and my friend comes with me so we usually entertain ourselves. As for how it feels... I don't mind needles and other than a needle I don't feel anything. Hopefully the infusion goes well and you get well soon! :)

[mishb]

I haven't had it Alysia, but I wish you all the best for Wednesday and I hope it works to get you closer to a drug free remission :biggrin1:

[Alysia]

Thank you very much, drz, rebekah & michelle.
If anyone else can give me more info, I will be gratefull.
I hope Im not posting here too much... if so, please tell me... :unsure:

[Jaha]

Alysia,

I had multiple reactions, as I was having the infusion, my tongues started to swell and the roof of my mouth got real hot. They stop the infusion and gave me steroids,benadryl and tylenol. After about 6 six hours after it was over I started coughing, couldn't breath,got a high fever and my throat started closing. So I took more steriods and tylenol and came out of it in a couple hours. So when I had my next infusion-2nd of that series, they told me to take benadryl and tylenol every 4hrs for 24 hrs and didn't have any reactions. Good luck to you, not everyone has any reaction only the wiped out after effects. I will be thinking of you on Wed.:biggrin1:

[annekat]

Thank you very much, drz, rebekah & michelle.
If anyone else can give me more info, I will be gratefull.
I hope Im not posting here too much... if so, please tell me... :unsure:
No, you are not posting on here too much! There isn't a limit. There are some very active posters on here, and that is fine. Most of all, good luck with your RTX treatment! I hope it goes as smoothly as possible with minimal discomfort or side effects, and that it clears up your WG symptoms in a big way! :biggrin1:

[Alysia]

thank you Jana for the info, it helps.
thank you Anne for the support, you are always there, warm and caring.
I am very gratefull to everybody here, you are amazing.
Im sending you my love.

(I wanted to send flowers, but couldnt insert the Image. another thing to learn....)

[Alysia]

Hi,
now I am after it, and at home (sweet home...) Im writing here my experience (for next "generations"): after meeting the doc, they gave me dexamol & Phenergan and in the IV at first 120 mg of some steroids (makes me headache). only then they started the RTX. I had only one phenomenon: my blood pressure was getting down all the time, about 80/40 so I had to drink a lot of tea. I felt dizziness, heavy, like drugged. I couldnt sleep ,probably because my need/fear to be in control.
I can say that it was possible. not so bad at all. although Im exhausted :sleep:
now lets see how RTX is going to fight WG...
and I was the only weggee there. still I never met face to face another weggee.
Thank you for being, for being here, and for being the way you are.

[annekat]

Reading these descriptions, I'm STILL glad I haven't had to take RTX! But I'm glad you got through the experience OK and am sending you best wishes to knock out those WG symptoms and get you into remission! :smile1:

[mishb]

I'm glad you finally had it done Alysia.

I hope you start to feel the benefits of it shortly.

Rest up, our weggie friend

[Tom]

I had some apprehension like you but that was all laid to rest once I started the treatment. No ill side effects although they gave me an antihistamine with mine. It was as a precaution, I didnt have areaction to it. But an allergic reaction is probably the most will experience if that but they monitor you and get you through it with no discomfort. As for my experience, I had no after affects either. As suggested, take a book ,music, snack or video game if you want, or you can just rest.

[Debbie C]

Hi Alysia..glad to hear you got thru it with no big problems,except your blood pressure. Hope you have a quick recovery from it and it knocks out alot of the wg.

[Jaha]

Glad to hear you that you got thru the 1st tx and are at home resting up. I am wishing for you more strength and wellness day after day. Take care of yourself!