Smokie Darling 13 March 2006 17:44:04 [ permanent link ]
bernie wrote:> Hi,>
Has anyone else been for retuximab infusion, I am due to go in few weeks and> would be interested to know how they got on.> Thanks Bernie
Well, I had 2 infusions, unfortunately it did not work for me. One thing I would warn you of, it takes for freakin' ever. At least mine did. The first infusion took nearly 8 hours, the second one took 6 hours. I realize that they had to begin very slowly ("x" mg per hour for 30 mins, then up to another level for another 30 minutes....) to watch for adverse reactions, but dang my backside hurt after that (I did get a free lunch for my $12,000 treatment).
I ended up with hives so changed medicine, but that was the only reaction I had. Never seemed to help me, but someone here uses it (I *believe* it's Duckie, but could be wrong about that), and it helped her alot as I recall.
On 13 Mar 2006 06:44:04 -0800, "Smokie Darling (Annie)" <Barnabus1993@yahoo.com> wrote:
I ended up with hives so changed medicine, but that was the only>reaction I had. Never seemed to help me, but someone here uses it (I>*believe* it's Duckie, but could be wrong about that), and it helped>her alot as I recall.
I think that is right but she said it took about 3 months before she felt better. She mentioned sometimes responding to the drug takes a while. Duckie come out, come out,....... where ever you are!!!!!
Smokie Darling 14 March 2006 17:22:11 [ permanent link ]
Mary Z wrote:> On 13 Mar 2006 06:44:04 -0800, "Smokie Darling (Annie)"> <Barnabus1993@yahoo.com> wrote:>
I ended up with hives so changed medicine, but that was the only> >reaction I had. Never seemed to help me, but someone here uses it (I> >*believe* it's Duckie, but could be wrong about that), and it helped> >her alot as I recall.>
I think that is right but she said it took about 3 months before she> felt better. She mentioned sometimes responding to the drug takes a> while. Duckie come out, come out,....... where ever you are!!!!!
Well, at least my "swiss cheese memory" managed to retain that bit of information correctly. Heck, I even remembered that it took a long time for her show improvement.
Although, I did noticed that I seemed to have a bit more energy a couple of months after the treatment. Didn't help the pain, but the exhaustion got better (too bad the hives got infected, or I'd risk those just to have the energy back again).
My niece in England has just been told that this is the last option for her polymyositis, and she will start it soon...she has tried everything else for two and a half years, and nothing is working and she is getting weaker.
Dr. Oddis at UPMC has just been awarded an 8 million dollar grant to study this disease and so far has used this drug on three people and two are responding very well.
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