Is anyone here on rituxan at the moment and how is it working for you? How
long after the first 2 infusions did it last? What side effects of the
infusion and how long did those last? It looks like I might be trying it as
soon as next week and just am not seeing what I need on the net.
Thanks as always. Diane D. says hi. She is fighting yet another infections
and is still in Rehab. She says thanks for the card Jo.
Anyhow thanks in advance for any information anyone can give me.
Kelly
Charrlygrl1 - 27 Jul 2006 16:44 GMT
Kelly,
There are a few people at www.arthritis.org on the RA discussion boards
who are currently on Rituxan. Perhaps you could find some answers
there.
Char
> Is anyone here on rituxan at the moment and how is it working for you? How
> long after the first 2 infusions did it last? What side effects of the
> infusion and how long did those last? It looks like I might be trying it as
> soon as next week and just am not seeing what I need on the net.
Kelly - 27 Jul 2006 17:05 GMT
Thanks Char - I got a bit more information there and hope to get some more
information today from my nurse practitioner. They are doing a joint count
today to submit to British Columbia Pharmacare (a panel that approves that
med for payment or partial payment by the province.) and it is going to be
wild. Orencia and rituxan are my only choices left again and the rituxan is
the med of choice because of the effects left by the enbrel. So wish me
luck.
Kelly
> Kelly,
> There are a few people at www.arthritis.org on the RA discussion boards
[quoted text clipped - 8 lines]
>> as
>> soon as next week and just am not seeing what I need on the net.
ladylove77 - 27 Jul 2006 17:42 GMT
Kelly, didn't Duckie use this before she moved?
Gwen
> Thanks Char - I got a bit more information there and hope to get some more
> information today from my nurse practitioner. They are doing a joint
[quoted text clipped - 17 lines]
>>> it as
>>> soon as next week and just am not seeing what I need on the net.
Kelly - 27 Jul 2006 17:53 GMT
I just found the information on google - thanks Gwen.
Kelly
> Kelly, didn't Duckie use this before she moved?
> Gwen
[quoted text clipped - 20 lines]
>>>> it as
>>>> soon as next week and just am not seeing what I need on the net.
Donald Whitely - 27 Jul 2006 17:54 GMT
Kelly,
I have RA, fibromyalgia, osteopenia, scoliosis and spinal stenosis. For
approximately three years I was on Embrel and am rated as severe
arthritis. I developed Non Hodgkin's Lymphoma and was told both by my
Oncologist and my Rhuematoligist that it most likely developed as a
result of my RA and not the Embrel. Those people who have severe
Arthritis, 30% are likely to develop Lymphoma.
I received a Chemo protocol which was called R-CHOP. The R, was
Rituxan. At that time I had other medical problems going on as well.
Such as Kidney stones which when lasered requiring stents in my
Ureturers ( most extreme pain I have ever experienced), a serious
infection which required Vancamycin infusions and a breathing problem.
I could not have distinguished at that time what if any affect it had on
my RA.
I have been in remission now for quite a while and my Oncologist is
giving my the same series of four Rituxan infusions that my
Rhuematoligist was going to give me. The infusions I receive at the
Cancer Center are stronger than those given for RA. As a part of that
infusion I also receive an infusion of Benedryl which is probably
given to all those who get Rituxan. It makes my quite drowsy and I
usually end up taking a nap at home afterward. The first infusion took
about six and a half hours, but now we are down to about four hours.
They will also keep a close check on your white blood cell count. A
complete CBC is done before every one of my infusions.
I have had three of my infusions now and will do the last one this next
Monday. I no longer have the pains in the soles of my feet, I have
little fleshy padding on my soles. I am practically walking on my bones
every time I walk on a hard surface barefooted. The severity of my neck
and shoulder pains have diminished (unless I spend hours on a computer
project without taking sufficient breaks. A back pain under my left
shoulder blade has disappeared entirely. My breathing problem has
improved, I used to wake up some mornings feeling absolutely breathless.
My fatigue level has also improved.
My Rheumatologist has me on a 25mcg Fentanyl pain patch which I change
out every 72 hours. I also use anywhere from one to three, 5 MG
Oxycodone during the day to control pain. I still ice my shoulder and
neck pains when they get out of hand.
I will be having another CT scan and lab tests in September to confirm
my remission status. In six months I will undergo another series of
four Rituxan infusions. My Oncologist reminds me that he is unable to
cure Non Hodgkin's Lymphoma, but he may be able to keep it in remission.
It can come back at any time. I have a great Oncologist who is in
charge of and tracks all of my medical procedures aside from the cancer
in order to keep me on track.
I hope this has helped you.
Don Whitely
> Is anyone here on rituxan at the moment and how is it working for you? How
> long after the first 2 infusions did it last? What side effects of the
[quoted text clipped - 7 lines]
>
> Kelly
Kelly - 28 Jul 2006 01:36 GMT
Thanks Don - this is of great help. We applied for financial help today - I
had 21 swollen joints and 68 tender ones so I am definitely in a flare.
Duh.
Kelly
Donald Whitely - 28 Jul 2006 19:17 GMT
Kelly,
I hope you are able to get the financial help you will need for the
Rituxan.
I am on Medicare and that is a plus for me. We have a fairly responsive
health care plan. My wife is under a health plan with the PERS (Public
Employees Retirement System) from her job with Cleveland Heights
/University Heights school system in Ohio. We probably had a better
chance of approval going to the Cancer Center than we would have had at
the Rheumatologist. The plan is not in the greatest financial shape so
we can only hope it sees us through our lifetime. There have been
periodic warnings of cutbacks in both hospital and drug benefits.
My Daughter struggles with her medical and household bills and I marvel
at how many, not yet eligible for Medicare and with poor or no insurance
manage to survive. I know there is some help from the States and
various drug companies, but all cost keep rising making it more
difficult to stretch the household budget.
The infusions are very costly about $14,000 each time. I am waiting for
our first billing which will take about two months, they are slow billing.
Feel free to E-Mail direct with any other questions.
Don Whitely
> Thanks Don - this is of great help. We applied for financial help today - I
> had 21 swollen joints and 68 tender ones so I am definitely in a flare.
> Duh.
>
> Kelly
Diane - 28 Jul 2006 19:48 GMT
don, i'm glad to hear you're doing so much better. you've been through
so much. thanks for sharing your experience.
diane
Squirrely - 28 Jul 2006 17:40 GMT
Don,
Good to hear from you again. Have missed seeing you around. Glad you have
been in remission. Keep us updated to how it is going.

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Love and hugs Jo
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Duckie - 28 Jul 2006 04:38 GMT
I have 4 doses, once a week for 4 weeks. That was a year ago in May. I
had no reaction during the infusion for the first 3.5 infusions and the
last half, I had my throat start to close. They dosed me with steriods
and benedryl iv and lowered the pump rate and started again. I managed
to get in the rest of the dose.
I had no positive reactions to it week one; got achy week two afterward;
week three I was in awful pain afterward like every joint was really
angry [and I guess it was as my arthur hates going into remission]. The
RD wrote a script for Vicodin when I called in tears. It got me through
the worse two days. He had to beg me to take the last dose and I did
only to have that throat issue.
Then nothing for two months.
Suddenly, the drugs I was on before Rituxan and still on now began to
work again. In other words, the Remicade and Arava combo had begun to
fade. It is now working very well again. So I have made it past the year
mark and according to the new RD, my T cell count is still holding [low]
so the Rituxan is still holding.
Did any of that help?
Duckie
> Is anyone here on rituxan at the moment and how is it working for you? How
> long after the first 2 infusions did it last? What side effects of the
[quoted text clipped - 7 lines]
>
> Kelly
Nann Bell - 28 Jul 2006 20:54 GMT
> Is anyone here on rituxan at the moment and how is it working for you? How
> long after the first 2 infusions did it last? What side effects of the
[quoted text clipped - 7 lines]
>
> Kelly
no advice, Kelly, but I hope and pray that you get to try rituxan and that it
works for you. I can't imagine going without Enbrel on top of everything
else you're going through. Ay-yi-yi! I'm bemoaning having to skip today's
shot for a relatively mild cold - peanuts compared to your symptoms.

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