Hi gliders, I hope the switch to rituximab works, from what I have heard and read it should, how long have you been on azathiaprine ( I have been on it for almost 2 years) and what problems have you had with it? I am hoping to go on rituximab towards the end of this year ( fingers crossed) as it is going to be placed on the Pharmaceutical benifits system in Australia, hopefully I will be able to access it.
Regards Woz.........
Gilders,
I hope everything goes well for you with the RTX. I have had to have RTX, 6 times since 2012, the 2 TXS in a 2 wk. period. I had some reactions along the way and now they give me IV Benadryl, IV Solmedrol, and Tylenol, then run it very slowly. I have to continue to take Benadryl and Tylenol every four hrs. for 24 to 36 hrs., depending on how I'm feeling. I hope you enjoy your holiday and wish you all the best in the coming weeks in the Trial.
Jana
Do not fear anything, just do it afraid!
It does not matter how slowly you go, as long as you do not stop!
Hi Woz,
I have been on Azathioprine for about 15 of the last 20 years. I've learnt from my new Dr that this is longer than what is recommended for this drug. As for what problems it has caused me, it's hard to say. I've been on many drugs and also have quite a few other conditions (some linked to Wegener's and other ones too), so it's hard for me and Drs to decided what causes various problems with health. One thing that it 99% certain to be caused by my long term Azathioprine use is the immature, odd-shaped red blood cells.
I hope you manage to get the funding for RTX. As I'm in a trial there was no issue. At the start of this most recent relapse I'm having I think I should have started with RTX, but think it wasn't offered due to cost. I think the rules in the UK (according to NICE) is that cyclophosphamide must be used first before RTX can be authorised.
Diagnosed April 1995
An update on week 2 of trial (infusion #2).
I was under the impression that with RTX each subsequent infusion should be more pleasant than the last. Unfortunately that wasn't the case this week.
The whole infusion was expected to be done with about 2 hours quicker than the first one as there was no need for IV steroids this time and the rate of infusion could begin quicker as I didn't react adversely during the first infusion. Overall it took almost as long as the first infusion as it didn't go 100% smoothly.
As usual trying to get a cannula in to a suitable vein and get it working was an issue. Finally it looked like it was working. It felt uncomfortable, but seemed to be working. After it had been used for blood samples and being flushed out after anti histamines I was connected to my bag of RTX (814mg for those who are interested). At this point the uncomfortable feeling became more of a painful feeling. I knew something wasn't right and my wife called the nurse. She said she wasn't concerned as there was no swelling near the cannula and it wasn't a "burining" pain I was feeling. She asked me to move my are slightly as maybe keeping it in one position may have been causing discomfort. This made the pain worse. She then slightly touched the cannula to slightly re-position it. At this point the pain was unbearable and the infusion machine began to beep - the RTX was not able to be pushed through at this point. She then said, "you must have known there wasn't something right with the cannula". It was removed and a couple of other people had a look at my veins. Another cannula was put in and this was also uncomfortable and at times painful, but it did last long enough for the rest of the RTX to be infused.
I felt much sicklier during this infusion than the first one and while the first time I was quite relaxed, this time I was constantly looking at the IV bag thinking "how much longer?".
I don't want to worry other people who may be due to have RTX. I'm sure the slight complications I had on this second infusion was due to my body (dodgy veins) rather than the RTX itslef. In fact, the sickness may have been down to the stress of failing cannulas which always make me anxious rather than the RTX. I didn't feel as sickly at night and the following mornings like I did after the first infusion, but have felt more tired. The tiredness could be due to the fact I've been a little more active this week.
Hope all goes well with my next infusion on Wednesday as I'm due to fly to Portugal the morning after.
I'll carry on to update so long as there's an internet connection at the villa in Portugal.
Diagnosed April 1995
Now that they know about your "dodgy" veins, I hope the next infusion goes smoothly. I felt a little tired the day after my two infusions, but drove off on two vacation trips (6-10 hours drive away) with no problems. Hope you can enjoy your holiday.
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
cannula's, dont you just hate them. I have to admit out of everything we have to go through and endure, that little piece of kit is my bette noir!
They are of course a necessary evil, and that's the only way i can accept them!
Are you fully hydrated before your infussion Gilders? It has been hot of late and I find that i need to dink more and more water. That does help with the veins I believe.
Good luck next week and then sit back and enjoy your time in Portugal!!
Gilders, so you had troubles with the 2nd tx. They may have been running it to fast for your veins to take. I wish you all the best for your next one and that you enjoy your trip.
Jana
Do not fear anything, just do it afraid!
It does not matter how slowly you go, as long as you do not stop!
Thanks Jaha. I'll certainly ask them not to do it any faster on my third one on Wednesday.
My feet are so badly swollen at the moment I can hardly walk. Dr Jayne doesn't think this is due to RTX though. It's likley to be due to Amlodopine, high dose steroids and one of my other drugs (I'm so forgetful at the moment with the steroids). The fact that my kdneys are at stage 4 also makes my feet swell. I'll be quite happy relaxing in and by the pool on holiday with a good selection of books. My usual holidays involve lots of exploring (at a gentle pace), but this year I think I'll just want to relax and try some local food (peri peri chicken).
Diagnosed April 1995
Gilders, Sorry about the feet swelling. Just take it easy on holiday. I have learned along the way,if nothing else in this journey, that little things are just as pleasurable. The fact of just being able to travel and being away from home to me is exciting. The local food does sound like a great adventure, enjoy!
Jana
Do not fear anything, just do it afraid!
It does not matter how slowly you go, as long as you do not stop!
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