HI Cords | Arthritis Information

Cordelia!  How are you and little Nevie?  Missed you, Janie. Janie, I am good. Well mostly. In spirits if not body.

I am here watching and reading but I have also been having to rest a lot now school is back to recoup from the long summer holidays.

My blood work is through the roof since December and I've been hardly able to move due to that. Pain levels have also been excruciating.

And to top it off last weekend was Neve's 7th birthday and we did a party for over 25 kids. Grandpa paid for it as Grandma had been saving to give Neve one when she died.

We kept it simple. Our little local pool is in the park here so we had an afternoon tea with swimming and a jumping castle.

I couldn't have done it without my wonderful friend Susan who shopped for the food and my gifts for Neve as I could not. On the day she put the food out and kept it coming.

I had to go on five days of 5mg Pred to get me through it but I actually had a very well day on the Saturday so it was nice to actually enjoy it rather than just survive it.

And I should be starting my now 4th round of Rituxan infusions this month. I'm starting to feel like a veteran hitting my 4th time. This is an organisational nightmare in that I have to find somewhere for Neve to stay for four days over each infusion which means 8 days away from hom for her in a two week period.

Mentally and emotionally regardless of my pain levels and stiffness I am feeling very grounded.

HI again Cords, jeez you are so tough, bringing up Nevieon your own, good on you girl!  I admire you. 

With the Rituxan, can you tell me, in your case, how long before you had to go for your first infusion after the initial two on days 1 and 15, how did your body respond to it, and were the benefits quicker on that go?

I am feeling intensely tired and have a few mouth ulcers, but the worst part for me was a relentless headache for about a week after the infusions and intermittent now.  I would love to hear all your news, I love reading your posts, something about the way you write, c'mon wheres your first publication, I want a copy!

My joints seem better generally at times and at times not?  But the osteoarthritis is crippling, my scans show terrible degenerative disc disease in the spine, and my feet are a mess, I am ready to see an orthopaedic surgeon to see what he can do.

Hugs Janie.  Belated Happy Birthday to little Nevie! XXXXX Well, thanks Janie for you kind words...wow, I have had other people tell me that they admire me also.

I suppose I am tough but I don't have any other options. It's either be tough or don't survive.

And when you have a child, it's a commitment, a life long one. I don't have the choice to opt out. That is just not an option.

Her father has opted out so Neve needs one parent who isn't going too. I never saw it as an option. I just have to find a way to single parent and work through the challenges RA brings my way. There is no other alternative. Simple.

My infusions...I will give you a big of a run down of my experience so far with Rituxan. When I speak of 'rounds' in the following paragraphs I mean that 1 round is 2 infusions - 2 weeks apart repeated every six months.

Round 1 -

Infusion 1 - An anaphylactic reaction of fever and itchiness in the first hour.  Phenergan administered through cannula and infusion stopped briefly while myself, nurse and doctor consult. It is decided to start again but drop back to the last level before continuing on with the rest of the infusion. From now on I will have Phenergan as a standard part of my pre med.

Infusion 2 - it all goes without a hitch, no reaction this time.

I find after both these infusions done over a 6 hour protocol, I am a bit knocked about for a few days...exhaustion mainly.

Results - the Rituxan can take anywhere from 8 weeks to 16 weeks to kick in the very first time. I kick in at 9 weeks. Get 5 fabulous weeks where I had energy and almost felt normal, then I flared badly. But I do go from have 42 swollen joints to 4 swollen joints.

Round 2 -

Infusion 1 - They put this one through at 41/2 hours. I end up bedridden for a week not two days.

Infusion 2 -  Again they put this one through at 41/2 hours. I end up bedridden for a week not two days.

Well it is a cancer drug so putting it through faster very much affected me.

Results - Not a lot. I have spiralled into a major flare and end up in hospital for a months due to this flare. There are concerns from my RD that because of red tape, my infusions didn't overlap so I was left without any medicine coverage for a fair amount of time. And there is no major miraculous showing of the Rituxan doing anything much but right near the six months mark, when I am due for my next infusion, I start to get some little bits of energy that has to be the Rituxan doing it's job.

Round 3 - 

Infusion 1 - This time we make sure the infusions overlap and I am given them at the 6 hour protocol which I insist upon.

Infusion 2 - Again, I insist on the six hour protocol and find this means that I am only knocked off my feet for a few days after each infusion.

Results - it's hard to say exactly. My ESR and CRP have been astronomical that past few months but inspite of that and the pain and stiffness that has gone with it, I have still had little patches of energy that can only be the Rituxan.


Round 4 -  It should be happening this month.

Things to note:

• In AU we are only allowed Rituxan every 6 months, not three as it can be administered in the US and other countries.
  
• My RD does believe that slowly but surely the Rituxan is reigning in my RA. I have to agree with him. It's just going to take as many rounds as it's going to take to get there for me.
  
• My rheumy, Dave says he has two types of Rituxan patients - the ones like me that need it the minute they are eligible for the next dose and then the others that are fine until they feel the Rituxan in there system is decreasing and they need another infusion.
  
• Apart from my initial anaphylactic reaction and being wiped out with exhaustion for a few days...I have had no other major side effects.
• For me, Rituxan has worked on my symptoms in this order - firstly, I get some energy back, my fatigue is way less. Then my joints are less swollen and then the pain settles. So when I feelt that energy boost, I know what is doing it.