Thursday, July 17, 2014
Wednesday, July 16, 2014
The low down on my chemotherapy treatment!!!!
Rituximab:
Rituximab is a chimeric monoclonal antibody against CD20. Rituximab has been
used successfully to treat autoimmune conditions such as rheumatoid arthritis
(approved use) and SLE (off label). Preliminary it appears quite effective in treating
relapsing remitting multiple sclerosis and neuromyelitis optica as well. Clinical trials
using anti-CD20 molecules are ongoing.
There have also been recent theories that African american may have a b-cell
predominant disease pathophysiology and that a therapy such as Rituximab that
targets B cells may prove more effective in treating this population.
Routine protocol os 2 doses separated by two weeks. CD 20 and CD19 cells can be
checked to monitor efficacy of the drug.
Common side effects are infusion reaction including headache, flushing, low blood
pressure and fatigue. Allergic reactions including anaphylaxis has been reported.
Rittuximab can increase teh risk of infection including bladder infection, sinusitis,
upper respiratory tract infection as well as pneumonia and serious infections. It can
also decrease the effectiveness of immunizations. Immunization should be
administered prior to initiating this therapy. Although not in MS patient but there has
been case report of PML associated with Rituxam used in other disease (1 in 25,000
cases).
Baseline CBC, electrolyte, LFT, hepatitis B panel, beta-hCG and CD 19 should be
checked. Because of risk of hypotension during infusion one can consider holding
antihypertensive medication on the morning of infusion.
In summary:
Rituximab is an intravascular infusion which completely depletes one particular type of
white blood cell called B-cells, which has downstream effects on the rest of the immune
system. Though protocols are slightly different, in general, it is given two times twice a
year (4 infusions total), and is given in an outpatient infusion center. This is because of a
30% risk of an infusion reaction without pre-medication with some cocktail of
methylprednisolone, diphenhydramine and perhaps acetaminophen. The medication is
quite well-tolerated. There are generally no side effects to the medication. There is no
lymphoma risk with this medication. There is a baseline and 6 months blood test to
monitor the B-cell CD20 expression. Rituximab is Category C in pregnancy so may be
toxic in animals or no human data, there are no official FDA reports of birth defects in
cases of pregnancy with rituximab but babies are born with no CD20 cells. It does not
appear to increase risk of infection in babies as the cells re-populate within 6-18 months.
In monkey studies performed by the manufacturer, there was no toxicity on the fetus and
monkey babies were born with no CD20 cells, again with no infection risks. In the largest
case series published in February 2011, out of 153 women who became pregnant on
rituximab, there were 4 post-natal infections and two congenital abnormalities (1 club
foot, 1 heart defect) but these women were also on other immunosuppressant
medications during the pregnancy, including azathioprine and mycophenolate. They
concluded that rituximab does not increase the risk of congenital malformations above
the natural rate of 1-2%. Planned pregnancy is still recommended.
References:
1.http://myelitis.org/symptoms-conditions/neuromyelitis-optica/prognosis-management-nmo/
2. A retrospective study evaluated the efficacy of rituximab in 25 patients with
neuromyelitis optica (Devic’s disease). At a median follow-up of 19 months, the median
annualized posttreatment relapse rate was lower than the pretreatment rate (0 vs. 1.7,
p<0.001), and disability improved or stabilized in 20 of the 25 patients.
Jacob A, Weinshenker BG, Ivo V, McLinskey N, Krupp L, Fox R, Wingerchuk D, Boggild
M, Constantinescu C, Miller A, De Angelis T, Matiello M, Genain C, and Cree B.
Treatment of neuromyelitis optic with rituximab: retrospective analysis of 25 patients.
Archives of Neurology, 2008; 65:1443-1448. PMID 18779415
Rituximab is a chimeric monoclonal antibody against CD20. Rituximab has been
used successfully to treat autoimmune conditions such as rheumatoid arthritis
(approved use) and SLE (off label). Preliminary it appears quite effective in treating
relapsing remitting multiple sclerosis and neuromyelitis optica as well. Clinical trials
using anti-CD20 molecules are ongoing.
There have also been recent theories that African american may have a b-cell
predominant disease pathophysiology and that a therapy such as Rituximab that
targets B cells may prove more effective in treating this population.
Routine protocol os 2 doses separated by two weeks. CD 20 and CD19 cells can be
checked to monitor efficacy of the drug.
Common side effects are infusion reaction including headache, flushing, low blood
pressure and fatigue. Allergic reactions including anaphylaxis has been reported.
Rittuximab can increase teh risk of infection including bladder infection, sinusitis,
upper respiratory tract infection as well as pneumonia and serious infections. It can
also decrease the effectiveness of immunizations. Immunization should be
administered prior to initiating this therapy. Although not in MS patient but there has
been case report of PML associated with Rituxam used in other disease (1 in 25,000
cases).
Baseline CBC, electrolyte, LFT, hepatitis B panel, beta-hCG and CD 19 should be
checked. Because of risk of hypotension during infusion one can consider holding
antihypertensive medication on the morning of infusion.
In summary:
Rituximab is an intravascular infusion which completely depletes one particular type of
white blood cell called B-cells, which has downstream effects on the rest of the immune
system. Though protocols are slightly different, in general, it is given two times twice a
year (4 infusions total), and is given in an outpatient infusion center. This is because of a
30% risk of an infusion reaction without pre-medication with some cocktail of
methylprednisolone, diphenhydramine and perhaps acetaminophen. The medication is
quite well-tolerated. There are generally no side effects to the medication. There is no
lymphoma risk with this medication. There is a baseline and 6 months blood test to
monitor the B-cell CD20 expression. Rituximab is Category C in pregnancy so may be
toxic in animals or no human data, there are no official FDA reports of birth defects in
cases of pregnancy with rituximab but babies are born with no CD20 cells. It does not
appear to increase risk of infection in babies as the cells re-populate within 6-18 months.
In monkey studies performed by the manufacturer, there was no toxicity on the fetus and
monkey babies were born with no CD20 cells, again with no infection risks. In the largest
case series published in February 2011, out of 153 women who became pregnant on
rituximab, there were 4 post-natal infections and two congenital abnormalities (1 club
foot, 1 heart defect) but these women were also on other immunosuppressant
medications during the pregnancy, including azathioprine and mycophenolate. They
concluded that rituximab does not increase the risk of congenital malformations above
the natural rate of 1-2%. Planned pregnancy is still recommended.
References:
1.http://myelitis.org/symptoms-conditions/neuromyelitis-optica/prognosis-management-nmo/
2. A retrospective study evaluated the efficacy of rituximab in 25 patients with
neuromyelitis optica (Devic’s disease). At a median follow-up of 19 months, the median
annualized posttreatment relapse rate was lower than the pretreatment rate (0 vs. 1.7,
p<0.001), and disability improved or stabilized in 20 of the 25 patients.
Jacob A, Weinshenker BG, Ivo V, McLinskey N, Krupp L, Fox R, Wingerchuk D, Boggild
M, Constantinescu C, Miller A, De Angelis T, Matiello M, Genain C, and Cree B.
Treatment of neuromyelitis optic with rituximab: retrospective analysis of 25 patients.
Archives of Neurology, 2008; 65:1443-1448. PMID 18779415
Tuesday, July 15, 2014
July 16th
Ok yesterday I got a call from my doctor's nurse, I knew it was coming. I just was trying to put it off as long as possible. I'm going on my fifth spinal tap and I just forgotten the rest of what I was going to say. I hate when that happens. I'm tired of these symptoms and it is time for me to educate myself a little bite more about how to keep my disease at bay. Where do I begin? I'm just jumping in................. http://ghr.nlm.nih.gov/chromosome/MT how about the mitochondria
July 15th
Do you ever wonder how did you get to this point in your life. Truth is most of the times you never just get there, things don't just suddenly happen, you just wasn't aware of the warning signs. Wither you were oblivious to the facts, ignored, overlooked the signs. They were there, you just didn't understand what it all meant till it was all put together. The real task begins once you figure out where you at in life or this illness is where do you go from here. The chemotherapy treatment is only a couple weeks away, I keep going back and forth about is there another option that can turn this thing around. Is my faith in God not working, yes it's a blessing that I'm still functioning. I find myself asking Lord why??? every time I get on my knee's. It could be worse and I'm learning to come into acceptance that this is my journey and my testimony. However long I'm on this earth I'm meant to help heal someone else's soul and give them hope through showing them the strength that God has given me through this trail. To God be the glory! Without faith it is impossible to get through your most tragic times, you have choices to make, your function and working under distress. This is the only thing that can carry you is your faith. Be careful how you carry it, it is your jewel. If it's not feed properly it can poison others. So take care of your jewel.
Tuesday, July 8, 2014
Taking Safe
So today is day five since I been off my Avonex and I do realize some problems but I'm still blessed for being here. I'm a little forgetful and my thinking is clouded. I have prepared a "just in case bag" and sat it below the counter. There is so much on my I don't know what to say this evening. For as talkative as I am, I'm nervous and have another brain fart. Maybe I should start by talking about the situation at hand of how I got here.
I started out on steroid's and that was definitely something that couldn't be a permanent solution, but it work wonderfully to me. It stop most of my symptoms and I was walking just fine. Coming off it felt like coming off crack or something. It wouldn't matter if you were put on it one time it felt horrible coming off. It took months to actually see a specialist and be put on Tysabri but having the JC virus put me at risk for being PML, which would leave me permanently disable. That possibility mortifies me, honestly I rather be dead than not to able to wipe myself or to move my arms. But at times my hands shake and I can barely grip now. I hide from people as much as possible. A couple months ago I was put on Avonex and it seem to be doing well, except I kept having migraines. Four months later, three eye doctor and a MRI showed finally that I was getting worse once I gotten off the Tysabri treatments. The Avonex wasn't working.
I started out on steroid's and that was definitely something that couldn't be a permanent solution, but it work wonderfully to me. It stop most of my symptoms and I was walking just fine. Coming off it felt like coming off crack or something. It wouldn't matter if you were put on it one time it felt horrible coming off. It took months to actually see a specialist and be put on Tysabri but having the JC virus put me at risk for being PML, which would leave me permanently disable. That possibility mortifies me, honestly I rather be dead than not to able to wipe myself or to move my arms. But at times my hands shake and I can barely grip now. I hide from people as much as possible. A couple months ago I was put on Avonex and it seem to be doing well, except I kept having migraines. Four months later, three eye doctor and a MRI showed finally that I was getting worse once I gotten off the Tysabri treatments. The Avonex wasn't working.
Fallen and I can't get up
So today is like the second day I've fallen in a row and a whole week off of my MS medication. I know scary, it hasn't been that long yet my body is getting so week so fast. I'm not remembering what I need to do. I really need to create a routine because things are so out of wack for me. I'm losing things left and right and I'm barely keeping my head above water. Thank God that he let's us look forward towards tomorrow.
I have so much going on right Between my childish neighbors, my disease on a rampage and me not thinking clearly besides the fact that I'm angry! hey!
I have so much going on right Between my childish neighbors, my disease on a rampage and me not thinking clearly besides the fact that I'm angry! hey!
Saturday, July 5, 2014
I'm not a profound speaker but I just like to talk. Right now I'm dead tired but I find myself on this mission on trying to find to find just the right setup and site for this purpose, whatever purpose this is. If that make's sense.........
We'll it's more for me and hopes to help someone down line with what I went through. Life isn't for all of us easy. And sometimes some of us unfortunately don't get the royal flush ever when we play. It's bad when you sit down for a game a card's and can't just get one good hand. You feel like you like you let your partner down, your a bad player, and you want to keep playing till you get a get a good hand. But the game has to end sometimes, mine may be sooner than other's. Not to speak it on myself, just the reality of my situation. Just Like the song say's today , " he woke me up this morning" so I'm greatfull. Till gravity hits anyway.
We'll it's more for me and hopes to help someone down line with what I went through. Life isn't for all of us easy. And sometimes some of us unfortunately don't get the royal flush ever when we play. It's bad when you sit down for a game a card's and can't just get one good hand. You feel like you like you let your partner down, your a bad player, and you want to keep playing till you get a get a good hand. But the game has to end sometimes, mine may be sooner than other's. Not to speak it on myself, just the reality of my situation. Just Like the song say's today , " he woke me up this morning" so I'm greatfull. Till gravity hits anyway.
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