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Medical Forum / Diseases and Disorders / Arthritis / August 2006

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Latest Rituximab Update

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Baino - 30 Jul 2006 00:53 GMT
Well thats me home again from hospital after another admission, however this
time it was for a review to see how the rituximab was working. I had all the
usual tests etc and the main jist of the results were that my ESR went from
70+ to 40+ so much lower and my DAS (disease activity score)was 7.09(very
little change) which is still very high. The physical examination of my
joints showed that I still have 20 joints inflammed still. I still have
extreme pain in my elbows and right ankle but the pains in my hands,
shoulders, hips and knees etc isn't as bad as it used to be. The consultant
isn't committing himself so far as to say that its definitely working and
that he thinks its still too early to say if its working as I've only been
on it for 8 weeks. He said it would be about 6 months before they could
safely say whether it was working hence my next re-admission to hospital in
October.
I'm now facing my first replacement joint operation on the 14th August (2
weeks time)where I'll be having my right elbow replaced with the left elbow
to follow after that and then the right ankle. All in all I'm feeling a wee
bit better and am praying that at my next admission for a further review in
October, things will be even better.The only bad side effect I seem to have
suffered is mouth ulcers, they just dont go away and are as painful as hell,
got prescribed some pain relieving mouthwash to help but I guess if thats
the only niggle to improve my arthritis then I can live with it. Has anyone
had an elbow replaced? as it would be much appreciated if they could give me
a wee bit of guidance as to what to expect.

regards

Robert
diclidophora@yahoo.co.uk - 30 Jul 2006 16:53 GMT
Robert

I hope this works for you. It looks promising if your ESR is dropping.
I think your DAS will drop more slowly, because it depends on several
factors and takes into account the number of swollen and painful
joints.
If your b cells are being depleted how does that place you regarding
infection after surgery ?

Best wishes

Peter

> Well thats me home again from hospital after another admission, however this
> time it was for a review to see how the rituximab was working. I had all the
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>
> Robert
Baino - 30 Jul 2006 17:54 GMT
Hi Peter,
            thats a good question with regard to the healing after surgery,
thats a question I was going to ask the surgeon as I'm still healing from my
left big toe nail and nail bed being removed and thats been since the start
of june. I have a feeling that this op isn't going to be as straight forward
as some think, there isn't much data that can be attributed to the rituximab
and surgery, I guess its going to be a learning process for all involved. I
think under normal circumstances the stay in hospital for this type of
operation is about 7/10 days, well see how I get on and I will post an
update when I get home. I have quite a few questions to ask the surgeon
about the op as I'm a bit apprehensive about not the pre-op but post-op as I
get around on crutches and the op will have quite a bearing on my life
etc.Yes, I do hope this will work because if it dosen't then its back to
trying different combinations and lenghty hospital stays which isn't very
pleasant.

Robert

> Robert
>
[quoted text clipped - 8 lines]
>
> Peter
Charrlygrl1 - 07 Aug 2006 16:36 GMT
Roger,

Good luck with the operation!  Are they making you stop the Rituximab
before the surgery, or no?

I would be very interested to see how it goes for you. There are many
people out there with Ankylosing Spondylitis waiting to see how these
new drugs are working out for those with RA. Rituxin, Orencia and
there's another one that I can't say or spell, but it starts with a G.
AS 'ers can't get together it's own studies I guess, so a lot of their
treatments are hand me downs from RA studies.

Again, good luck with the operation and the Rituxin!!

Char
Baino - 08 Aug 2006 01:37 GMT
Hi Char
           Thanks for the good wishes, No they haven't stopped the
rituximab although I've only had 2 infusions and its being used in
conjunction with Leflunomide which is an untried combination, most people
are given it in conjunction with MTX, however mtx has a tendency to make my
liver go off. The two infusions I've had should they work the RD said that I
could expect 9 months to 2 years respite from the disease, I'm hoping that
it works, so far I've only been on it 8 weeks and already my ESR has dropped
but on the other hand my DAS score is still very high. I wonder myself how
this will affect the operation and what effect it will have on the healing
process and also on the disease. I guess only time will tell. I know that
there are a couople of others here on it and doing very well according to
the RD, I just hope that I  get the same. Anyway I do hope that one day you
may be afforded the treatment, in my eyes if you need it then you should
have it no matter about the cost or area you are in. As far as the drug goes
if it dosen't work then its back to trying different combinations for me
again as these drugs aren't licensed yet and are very expensive.I will be
able soon to post an update as I undergo the operation next Tuesday.

Regards

Robert

> Roger,
>
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>
> Char
Harvey R. Stone - 08 Aug 2006 13:28 GMT
> Roger,
>
[quoted text clipped - 11 lines]
>
> Char

and most of the medicine for RA used to be for something else first.   So it
goes.
harv
 
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