Purpose:Benign Lymphoid Hyperplasia(Started Feb 05, 2010)
Date
Dosage
Efficacy
Side Effects
Adherence
Burden
Dec 20, 2010
1200 mL
Weekly
Major
Mild
Always
Somewhat
Date
Dec 20, 2010
Advice & Tips
IV chemo treatment for Benign Lymphoid Hyperplasia - first dose radically reduced swelling in all my lyph nodes. prior to Retuximab, my lymph nodes around my eyes caused swelling, and tumor growth that blurred my vision. After a few doses of Retuximab, eye swelling reduced and the tumor shrunk and it restored my clear vision.
Purpose:Neuromyelitis Optica(Started Oct 29, 2009)
Date
Dosage
Efficacy
Side Effects
Adherence
Burden
Jun 02, 2010
1000 mg
Every 3 months
None
Severe
Always
Not at all
Date
Jun 02, 2010
Advice & Tips
If you take Rituxan, be VERY aware of the strength of this drug, and of the possible side effects. Also consider that NMO in itself causes a great deal of fatigue and weakness, and that the Rituxan exacerbates these effects 100-fold. I deteriorated very quickly neurologically speaking, so much so that my parents (who are CRNAs) were truly afraid I would not survive the last treatment. Just be cautious, and be sure your body is physically strong enough to endure such risky treatment.
Purpose:Neuromyelitis Optica(Started May 22, 2008)
Date
Dosage
Efficacy
Side Effects
Adherence
Burden
May 25, 2010
10000 mg
Every 3 months
Major
Severe
Always
A little
Mar 07, 2010
10000 mg
Every 3 months
Major
Moderate
Always
A little
Mar 05, 2010
1000 mg
Every 3 months
?Can't tell
Moderate
Always
A little
Feb 28, 2010
1000 mg
Every 3 months
Major
Severe
Always
A little
Side effects:
Allergic reaction
Date
May 25, 2010
Advice & Tips
Make sure you are not allergic to the medication. Thought it was just an chronic infusion rxn, when I consulted the allergist, he said I was very allergic to it. Hated to stop the medication as it was very helpful. If you are allergic to guninea pigs/ mice do not take it!
Cost
< $25 monthly
Date
Mar 05, 2010
Advice & Tips
Due to increased severity of pain from the Devic's uncontrolled with the max dose of 200mcg Fentanyl, it was decided that by neurology to do an early dose of Rituxan. In other words, instead of 3 months, we did the Rituxan in 2 months as in the past this has helped with the pain. The infusion was over 24 hours and I had severe issues with hypotension and ventricular arrythmias, needed increased fluid support and keeps the support meds scheduled at every 6 hours (increased the dosages of Benadryl and demerol, tylenol). Will see if the pain improves!
Cost
$100-199 monthly
Date
Feb 28, 2010
Advice & Tips
This is the only tx that seems to be best though for some reason my relapses try to recur with two months after the infusion. With the other chemo (MTX) I had too many life threatening infections so I had to stop, I will have to deal with the side effects for now. I do feel great for the first two months after the treatment.
Usually the tx is done outpatient, but in my case I must stay inpt and the infusion is done between 12-18 hours due to side effects. Need hydration and cardiac monitoring before, during amd after to help deal/ monitor some of the adverse side effects. Myneurologist doesn't understand these increasing adverse reactions with each successive dose. Afraid to increase the frequency for this reason.
Purpose:Neuromyelitis Optica(Started Feb 01, 2009)
Date
Dosage
Efficacy
Side Effects
Adherence
Burden
Oct 30, 2009
10 mg
Every Other Week
Major
Mild
Never
Not at all
Side effects:
Insomnia
Date
Oct 30, 2009
Advice & Tips
Has made me feel alot better; however, I still have symptoms from permanet scare tissue damage. However; after my last two treatments: 1) Feb 2) Oct...both MRI's following each treatment showed significant improvement and no activity and no inflamation. I was and am happy with the results. However, if you are thinking about starting this treatment, it is very important to monitor your B cells through monthly Blood Tests to make sure the medication is doing its job and working.
In 2005 when I had this treatment it gave me moderate improvement but this time in 2008 I only had slight improvement and that only seemed to last for not quite a full year, unlike the other time which I had some benefit up to 3 years.
Cost
$200+ monthly
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