Rituximab

[gilders]

I started this topic about Rituximab after my first infusion about 15 months ago. I think it was my eighth infusion today.
It was the first time the cannula has worked from the start and through to the end, so that was great. As usual I was very tired and slept more than usual (maybe due to kidney funtion being worse than during previous infusions). I also felt nauseous after treatment had finished and then about 4 hours later once we'd reached home, but neither episode lasted long.
I was exremely ill after the last RTX infusion and my GP wanted to admit me in to hospital (I refused as I thought I'd be safer at home). I still think it was a virus. Today the specialist didn't think it would of been a virus as it took about 4 weeks to recover from, but also didn't think it was a reaction to RTX as previously I'd been well with it. He said if I have similar episode in the next few days they would not give me RTX again (Cyclophosphamide is a no go as I have bad reactions to that and Methotrexate would completely finish my kidneys off).
I have also started with nose bleeds and red crusty scabs and bogeys in my left nostril. He thinks it might be Wegener's activity. This worries me as the kidney transplant team won't assess me until I've been in remission for 18 months. With bleeding and bruising issues, it looks like I may not even be allowed a transplant anyway.

[gilders]

Another update as it's just after 01:30 and I can't sleep after my RTX earlier today. I'm quite awake due to bag of steroids they infused me with and which I'm used to, but I've got sharp pains and swelling in my stomach area.
I would still recommend Rituximab, but the fact that my kidneys have deteriorated further, I may be presently showing active Wegener's (bloody nose) and I may be reacting to the drug itself, as made my stamp of approval not so firm. Hopefully the tummy pain is just wind. I've been watching what I've been eating the last 2 weeks, but after the IV steroids I needed to take a break on the 4 hour drive home and felt I deserved a reward, so burger, fries and milkshake it was.

[Jaha]

I am sorry that you are feeling so poorly after the infusion. You really did deserve that milkshake and burger. I am headed for my 9th infusion tx soon and every time I have one I have a reaction. They now give me IV Benadryl and afterwards I have to take 2 Tylenol and 2 Benadryl tabs every four hours, for up to 48 hours to calm my system down. I still have more down time then others, but I really think it works a bunch for me. Wishing you all the best, keep us informed on your progress and take care of yourself.

[Alysia]

I am sorry gilders.. I hope you got some rest & relief after all. Wouldnt it be better to still get rtx even if you have some reactions ? I read on another thread that your alternative is cellcept ? Is it as strong as rtx ? Are you on some pred ? Maybe it can also help to keep you in the remission zone ? Hang in there. Keeping you in my prayers ♡

Jana, can you please share what are your reactions to rtx and how long they last ?

[Debbie C]

Gilders,sorry to hear that you are not doing to well after the infusion. I had to chuckle when you said that last time you thought you would be better off at home then in the hosp. You are probably right there ! Maybe the burgers,fries and shake is what has your stomach all rattled. I know after bendging on carbs last weekend my stomach is still screaming at me. I know I bruise and bleed easily from the pred,could that be why you are and if that is the case why would they not consider you for a transplant. Hopefully the rtx will kick in quickly and put you in remission. Saying a prayer for you that you will be feeling better soon and there is some improvement to your kidneys. Rest up and take care Keep us posted also

[gilders]

Just realised my last post was a fairly negative one post rtx infusion. I wanted to reassure people that rtx is overall a good treatment and soon after my last post I was back to normal (well, my normal).
Been very busy with purchasing new home. I love my current home, but it's not going to be suitable if my health deteriorates and when I'm on dialysis. My sister has loaned me the money and I now need to sell my current home quickly, but for as much as possible so that I can start to pay my sister back. So I've been de cluttering and getting the house in tip top shape. I'm absolutely exhausted and the house it looking so good I'll really miss it. It's the first house me and my wife bought together and which our kids grew up in, so we're quite attached to it.

[annekat]

Just realised my last post was a fairly negative one post rtx infusion. I wanted to reassure people that rtx is overall a good treatment and soon after my last post I was back to normal (well, my normal).
Been very busy with purchasing new home. I love my current home, but it's not going to be suitable if my health deteriorates and when I'm on dialysis. My sister has loaned me the money and I now need to sell my current home quickly, but for as much as possible so that I can start to pay my sister back. So I've been de cluttering and getting the house in tip top shape. I'm absolutely exhausted and the house it looking so good I'll really miss it. It's the first house me and my wife bought together and which our kids grew up in, so we're quite attached to it.

I'm sorry you had to give up the home that you love, and hope you'll become attached to the new one in time. I'm glad to hear you are back to "normal" since the last post.

[Alysia]

I am sorry, Pete, that you have to sell your house and move. I hope the new house will bring new joys and more comfortable environment. How are your kidneys so far ?

[Jaha]

Pete,
I'm glad that you got along good after your infusions. Enjoy your new place and don't work to hard trying to sale the old one. Please take good care not to stress about the move, it will be the best thing in the long run. Take care of yourself!

[Pete]

I had my infusion on Monday. In general, I feel pretty well. The treatment was 1 gm of rituximab in 300 ml of saline. Got 125 ml of solu medrol, 25 mg of Benadryl, and 325 mg of Tylenol. I took a brief nap about halfway through. Afterward, I had a substantial lunch of German food. As Monday evening wore on, I felt tired, but not sleepy. I went to bed (first time) at midnight (usual bed time) and tossed until about 1:15. Got up, took 1000 mg Tylenol and went back to bed at 2:30. Got up at 7:00.

Tuesday, I felt almost normal, but not overly energetic. I slept almost 8 hours last night.

Today, I feel normal, but still a little tired. I'm going to take a walk in a little while to get the blood moving again.

All in all, my experience with rituximab has been good. What I described above has been typical for me.