Janiefx? | Arthritis Information

Hi Janie,

I just wnated to know I was thinking about you. I hope your Rituxin infusion went smoothly and you are feeling better. Cheers, Hiking_gal

Hi Hiking Gal, I have been meaning to fill you all in but have been very tired and Liam is still having more fits and arthritic pain so have been taking care of him. We are both about to go to GP so hopefully she can sort something out for him.

The infusion was dramatic to say the least but the end outcome was 80% of the medicine was infused, it took 37 hours to infuse 400ml due to constant reactions every time we tried to speed it up, had to have 200mg of pred and also large doses of an antihistamine to ward off further reactions, my veins were collapsing and getting very sore from the infusion, that is why they stopped at 400ml. So we settled for 12ml an hour, and the staff and hospital were lovely so it was ok thank God. I felt better almost instantly but have realised today that it was the high doses of pred that were doing the trick. My feet and hands started to really hurt after they removed the drip and I had to have 6 heat packs and lots of pain relief, they reckon the infusion stirred everything up. The RD came in bless him and sat with me for about 45 mins telling me how sorry he was about all that I am going thru and sorry that he hasn't been able to help me much, then he said my hubby was a great father and hubby (as Gary was there looking after the boys while the Dr was there and after Gary left the RD said all this) he wants me to have another nuclear bone scan as my feet have deteriorated and he feels it is from about 4 different stress fractures and synovitis/pannus around the ankle bone, said he will send me to my orhto surgeon to decide what to do. Anyhow in 2 weeks I go back for more so have arranged again for a two night hospital stay as per RD, just hope it works, kind regards Janie. Oh my- you've been through a lot! I do hope things work out for you! I hope Liam finds something to work as well!

Janiefx,

Oh my, you are going through the mill. I am so sorry for your problems. You posting about all this helps me understand what could be down the road. I am finding out that everyone has different twist and turns with this disease. It makes be a bit frighten to think about what all could be in store next. I hope your next infusion goes smoother. I also hope that the meds work a miracle for you. Foot fractures sound so painful. Are they caused by the RA? Take care and get plenty of rest.

Tink

Hi Tink, thanks for your support, try not to worry about down the road, I am a complicated case with all my allergies and intolerances , so hopefully my path of RA will be a pretty unique one to a point. The fractures are not really caused by the RA but my GP and RD say that the bones have definitely weakened due to inactivity from RA, and the fractures have been caused due to osteoporosis/osteopaenia from 9 years of prednisone. Hopefully the Rituxan may help the whole process from inflammation to fatigue and maybe even lessen the need for the steroids, heres hoping! Regards Janie. Hi Janie,

I'm so sorry you had to go thru so much. Do they think it is safe to do additional infusions? It really worries me, after how long it took this time. Of course, I really don't know very much about the biologics. I know you will be careful, Sweetie.

Just wanted to let you know that you are in my prayers. I hope the Rituxan brings you relief from your pain.

Take care, Sweetie.

Much love,

Nini

Thanks Nini, you are always so lovely, I do appreciate it. My RD did ask if I was comfortable about having the next infusion next Thursday, and I said as long as the reactions don't progress, he said they may well progress but the hospital staff will be ready and waiting for an emergency, so I am going to go ahead or it was all a waste of time. As we only got 80% in he said it may not even be enough to make a difference, but I am praying.

Poor Liam, he is having ongoing mini seizures, his eye is fluttering and his mouth doesn't feel right, my GP wants me to keep him home at least until he sees his specialist RD next Wed. His arthritis is definitely active, he is taking nurofen and tramal and panadol at times, I have him sleeping in my bed as I want to watch him carefully while he is like this. My GP said if he had inflammation in his bllod tests that might even explain the seizures acting up but he is mostly sero-negative which is apparently common in children, all I can do is love him, reassure him and pray, last night as he was trying to go to sleep, he kept sitting up with a start saying he could feel the fit coming, he was very frightenend (the seizures always happen in his sleep so far) and he eventually wanted me to put my arm around him so he could listen to my heart so he could get to sleep and know I was there, how sweet, even at 12 he still is my baby, as if I would go anywhere??? Thanks for listening guys - always your friend, Janie. PS GP has referred Liam to a private neurologist in Brisbane as I told her I am not happy with the public hospital level of care. She said if it were her child she would see someone else asap.
janiefx2009-02-08 23:39:36Aww Janie, I havent kept up with whats been happening for you, and Im sorry about that. I send huggles to you and Liam, along with heaps of good thoughts and love.

xxxxx Lyn

Thankyou so much Lyn, you are always posting helpful stuff for us all, I don't know how you would get the time to keep up! Thanks again, Janie. I am soo sorry to hear of your ordeal, Janie. I hope the infusion will help you.

And I hope they are able to help Liam out as well.

Much hugs to both of you.

Thanks Joons, got an appointment with a private neurologist for Liam in March, so happy about that. He is still having mini seizures right now, he has been asleep for about 2 hours. How are you doing? Love Janie. Janie,

Liam has wonderful caring parents and I'm sure that carries him a long way as he goes through this struggle. I am sorry to hear that you had reactions to the rituxin. I know a lot of people do when they first start out. I'm glad the nurses are at the ready. I will continue to keep you and Liam in my thoughts and prayers...Hiking_gal