Sunday, November 30, 2008

Treatment Results Update

While getting away over the holidays and spending time with family is wonderful, it's always great to come home. We left Wednesday and returned home late this afternoon. Mark and I had a wonderful visit with his family. While I spent most of my time in the chair, I had a few good days and was able to go to dinner last night without the chair. I was a bit wobbly now and then, but it was nice to be able to WALK into a restaurant on my husbands arm. MS is such a beast. You never know what limits it's going to give you on any given day, or take away. I've started having painful muscle spasms again. The neurontin generally keeps them at bay, but they never completely went away. Now they are picking up in intensity and pain level. I'm diligently running my new protocols so I'm hoping things will settle down. One HUGE improvement I've noticed after running the new protocols is my energy level. I have great energy in the mornings. Of course, I try to be careful NOT to overdo. Time has taught me that when I overdo it's an invitation for TWF to visit and kick my keister. My balance is still hit and miss. Although I think the "hits" are slowly becoming more common than the "misses". I just have to remind myself to be patient. THAT is the hardest part. Being patient with myself and the process. I make sure I take my MS meds and run the protocols. Right now I try to run them every 3 hours. My hip, back and left leg let me know when the three hours are up and it's time to run my pain protocols. Thanks to the machine and protocols I am taking NOTHING for my left hip and back pain. Not even ibuprofen. Of course, running the protocols every three hours is much easier to do at home than when your away. I have a car power adapter so I can run my machine in the car. So today, during the 5 hour drive home I ran my protocols. For me, my body needs the treatments every three hours. I can tell the difference when I go longer. Not only because of the pain in my hip and back, but my energy level drops. I'm hoping over time, I won't need to run them so often, perhaps only in the morning and before bed. Again, that's where the patience comes in, and that's not one of my strengths. I'm pleased with the results I'm getting with Dr. Rhodes' program. Of course, I also work to keep my stress level down as well. A challenge anytime, let alone over the holidays. So far, so good!

Tuesday, November 25, 2008


Hard to believe that Thanksgiving is the day after tomorrow. Where has the year gone? We're traveling tomorrow so I won't be blogging the next few days. As your all gathered with your family and friends don't forget to give thanks for all the Blessings in your life! HAPPY THANKSGIVING and enjoy the shopping on Black Friday (We're hitting it at midnight.....nuts I know, but FUN)!

Monday, November 24, 2008

Treatment Continues

This is my fourth day home following being re-tested and treated in Corpus. I have to say, I see a HUGE improvement in my balance. I am no longer having to balance by moving holding the furniture. I'm not saying my balance is back to "normal", but it's A LOT better than it was. The fatigue is still a hit or miss issue. I find I feel pretty good in the mornings and I fade fairly quickly in the afternoon. Had a bout with TWF on Friday, which really wasn't surprising considering I traveled the day before and had a medical appointment that morning. I'm running the machine several times a day (which gives me the perfect reason to lie around and watch TV or read)! The pain in my hands have improved, but they still don't want to "work" right. Grasping things and opening lids are still challenging. I just wish my Left hip would start feeling better :( I shouldn't complain, the pain IS better as long as I run my hip protocol every three hours, but it's still a heck of an ouch! Let me know what you think about the changes and new additions on my blog site!

Sunday, November 23, 2008

Finding my Routine

Right now my body requires me to run my treatments about every three hours to keep the pain at bay. (Especially the pain in the left hip/pelvis, back and leg). So, I'm trying to plan my activities so I'm home for treatments. Fortunately, I have the ability to plan my day around them. I'd be in big trouble if I was working. So, every three hours I run the hip protocol and the back protocol. It's worth it if it means I'm almost pain free. Can't seem to get the hip pain to go away completely. It typically stays around a level 3-4/10. However, without the treatments it a constant 9, so I'm not complaining. I had a Cat Scan of the hip and pelvis done on Friday, so hopefully they will be able to figure something out. It's been bothering me since the fall i took in May. It's tough that I can't have an MRI because of my implants, we would have had the answer months ago as to what the specific problem is, if I could have had the MRI. Now of course they want to send me to a "pain specialist". Obviously I'm not one for narcotics. I'm on enough meds with the MS, I don't want to take any more, thank you very much. So, I suck it up, do what I can and live with the pain I have. It's also the reason I chose to see Dr. Rhodes. I'm also confident because of the results I've had using the machine, that eventually the rest of the pain will go away. Additionally, because of the treatment I receive through Dr. Rhodes, my balance is A LOT better than it was just two weeks ago. That's not to say I still don't get wobbly and have to hang onto things to get around now and then, but it's a big improvement. I hope that by Christmas I'm only using the chair for energy conservation or when I'm having an "off" day. Speaking of Christmas. Isn't it amazing that Thanksgiving is less than a week away? Where has the year gone? Seems they go by faster and faster every year. Makes me more aware of the need to slow down and enjoy life a bit more.

Saturday, November 22, 2008

Bittersweet Homecoming

Coming home after a trip is always great. Especially one where you've been gone 2 weeks. However, this homecoming was bittersweet. We had to put Valor to sleep the day before we left town. I didn't really have the opportunity to grieve. Coming home to a dog-less home for the first time in years as well as his ashes and paw print was beyond tough. So, while I was thrilled to be home, Thursday evening and yesterday I was gob smacked with grief. I think I've cried a river. Now, I know that each day will get better and while the pain fades the memories won't. I'll always have those. Rest easy my friend. Texas was a success. My frequency was changed a few times, which is why, if possible, folks should spend a few weeks there if they can. My balance is better, not perfect, but better. I'm starting to sleep a bit better and the neuropathy is better. The left hip pain and lower back pain is proving to be a bit tougher, but they will get there. Of course, the most important thing is the improvements I'm already seeing. My general pain level is MUCH better. That alone makes the trip worth doing. My fatigue level is better as well. I still have TWF hit now and then, but I generally have a good energy level in the mornings now. (Meaning I have to be careful no to do too much). The afternoons are still a challenge, but it all takes time and I have plenty of it. I'm running the programs about every three hours while I'm home. Three times a day if I'm out and about. I DO notice a difference if I don't run the machine as often. The pain level creeps up , my fatigue level gets worse and there goes the balance. If you want information on the clinic, click the link for Dr, Rhodes in the right column.

Wednesday, November 19, 2008

Homeward Bound

Tomorrow morning I'll receive my last treatment here for this stay, then it's off to the airport for the trip home. I can't wait to get home. The stay here has been a success, even though I know I still have a way to go. With this treatment, as in life, the baby steps are the ones that begin the journey and the steady ones get you to your destination. I'm REALLY looking forward to getting back home to Mark. I've missed him and I'm more than ready to get back on the mountain.

Tuesday, November 18, 2008

Great Day...doin the Happy dance!

Today was treatment day 7. I feel great. My mid back pain is completely gone as is my hand pain. The left hip, knee and leg are still an issue as is the lower back. However, even they have improved. When I came back my average pain level was 9 I'm now down to 4.5. Of course, the relief lasts about 3-4 hours and then my body tells me it's time for another treatment. Once again, you never realize how MUCH pain you were in until you get relief. Here's another BIG improvement. I walked into the clinic. No chair. Of course, I was wobbly, but I did it! My fatigue level is still an issue, but that's more than simply the MS. It's also related to the fact that I don't sleep and I absolutely REFUSE to take sleeping medication. I run a sleep protocol and eventually it will work. It will just take some time, and I'm patient......well, I try to be. :) So, I am definitely doing the happy dance! I have two more days of treatment before I go home and I know I'll be feeling even better on Thursday. I wish everyone could have the opportunity to visit Dr. Rhodes in Corpus Christy! I am SO glad (and Blessed) that our family found him. (Thank you MB)! Dr. Rhodes talked to me today about my next visit. When I come back we're going to start working on getting me off some of the medications I take now. It would be wonderful to be off the Neurontin and Klonopin at the very least. If his other MS patients and chronic pain patients can get off their meds, I am very optimistic that with his help I can too!

No man is an Island....but we are ALL.....

onions. That's right. ONIONS. One of my favorite scenes from Shrek is the scene where he and Donkey discuss how Shrek is like an onion. LOTS of layers. (See this is what insomnia brings. Lying in bed at night tossing and turning and becoming philosophical. Combine that with watching the evening news and EEKKKKK, no wonder I start to ponder). So, as I laid there with Mr. Sandman obviously passing my bed over yet again, I got to thinking about all the different types of "onions" we all are. Unfortunately, there are plenty of onions rolling around our society that look perfect on the outside. Yet, when you start peeing away the layers they have a perfectly rotten center. Yuck. Pity that rotten core is seldom revealed before the rest of the onion has already been tossed in the recipe of our life. Nothing worse that having to start the whole freaking recipe over again. Most of us use all our layers to PROTECT our center. We try to develop tough skins that are difficult to peel away. If that doesn't deter someone we try to keep them back by being "strong" enough to make their eyes water. (Defense mechanisms can be brutal to both parties). We spend our lives building layer upon layer of defense mechanisms to ensure that few, if any reach our center thereby REALLY getting to know the REAL us. Heck, sometime WE don't want to know the real ME. Often, having those layers peeled back is pretty painful. Not only do others get a step closer to knowing who we really are, but we do as well. I think that with all of the challenges we each face in our daily lives it all to easy to loose ourselves and build those layers. Who we are, and most importantly what we NEED. There is a huge difference between what we WANT and what we NEED. Figuring out what I want is easy....KNOWING what I NEED is the hard part. Fear is also a great layer builder. Fear of getting hurt, fear of failure, fear of a chronic disease and yes, even the fear of being a success. Some spend so much time being afraid that they miss out on so much. Friendships, new adventures and yes, even success. I think we've all been there at one point or another in our life. Wouldn't it just be a lot easier to do the work and shed some of those layers?

Monday, November 17, 2008


It so figures. Just when I'm noticing an improvement in my pain level with the treatments...wham....a cold. Started oh so subtly with a mild cough a few days ago. Now it's a full fledged almost constant cough, stuffed up head and sore throat. Anita (my friend who flew out to Texas to stay with me when Mark went back home) is sick too. The only good things about our colds are a). We feel too crappy to go out and shop (much to our husbands relief), b). (For me anyway), Dr. Rhodes has a cold a flu protocol for the machine and c). We should both be recovered by Thanksgiving. They ran the cold/flu protocol for me today at the clinic. After 30 minutes I could actually breathe through my nose. Of course, I can't run it constantly so I have a Vicks patch on tonight. Hopefully that will help keep both my nose and chest from being too congested through the night. Of course, I'm blaming this on the weird weather we've had here. The first 3 days I was here it rained every night and was humid as all get out during the day. Then it got chilly. Then it was beautiful and 80 degrees and the very next day in the 50's, windy and gray. It might get COLD at my place....but at least it stays that way! I never know how to dress here from one day to the next. I just hope we're feeling better by Thursday as that's our travel day to return home. I sure don't want to bring this home to Mark. UGH.

Sunday, November 16, 2008

Finished Week 1

Week one of treatments are done. Now on the best frequency for my body and Dr. Rhodes increased the intensity as well. I'm now at 2. The nerves of MS patients are very sensitive (makes sense) and as Dr. Rhodes said, "You can't push their treatment. With other chronic diseases and chronic pain patients you can". Meaning that the intensity level is usually pretty low. While 2 is low I was doing a mental "Happy Dance" when they were able to increase it that high. My previous intensity level was .5. Yep POINT 5. ANYTHING higher than that I could feel. Not painfully, however, your NOT supposed to feel anything. That's how sensitive my nerves were. So being at 2 is a big deal for me. I had a long conversation with one of the other physicians in the clinic, Dr. B (I can't pronounce or spell his name). He is VERY into holistic treatments and he sent my husband home with a "recipe" to treat my drinking water which will add a mineral to it. (We're going to have a mini science lab in the garage). I also talked a bit with Dr. Rhodes about MY MS. It's hard to see the DVD that highlights his patients with MS who have done so incredibly well that they are off their meds. Having the opportunity to talk to a few of his other MS patients face to face while they are there for treatment is wonderful, hearing their stories and seeing how they are walking and off most if not all MS related meds. I'm thrilled for each of them but then, there is me. In a chair and on the meds. Dr. Rhodes put it very simply, "There are those who respond very quickly, there are those that respond in a few months, and then there is you. You just need more time. We will get you there". Brings me to the thought, "Why the hell does everything have to be so flipping hard for me"? Yes, I DO see improvements, heck I'm on intensity 2! It really helps with the pain and obviously it's helping with the nerves as they are not as hypersensitive as they were. (Dr. B says that if that continues they may be able to work with my home MD and wean me off the Neurontin next year). I am SO thankful for the positive results I've seen. Perhaps part of my frustration is I have so many other things in my life to deal with I just want ONE of them to resolve itself. In an ideal world it would be the MS. Of course, I also realize part of my frustration right now is the loss of Valor. That's another entry. I just keep telling's not not the patience of Job I want.....I want to maintain the FAITH he had. So, I continue step at a time. Focusing on the Blessings and knowing that there IS a reason He allows things to happen. It's all part of the Journey we call Life. I just wish the journey wasn't so rough sometimes!

Friday, November 14, 2008

Treatment Day Four Came and Went

Yesterday was a busy day. Treatments at 10 am, lunch then to the airport to pick Anita up and sent Mark homeward. I missed my husband before he even left. Such is life. Anita and I then went shopping for staples. We both decided to eat in as much as possible. I introduced Anita to HEB Plus. A mega store her. Sure wish we had one of these in my home neck of the woods. MUCH better than a Walmart. Of course, we were there for over an hour. YIKES. By the time we got to the room got everything put away and Anita unpack we were too tired to eat dinner! So, I did a little reading on my Kindle then TRIED to sleep. I think I managed to pull off about 2 hours. Insomnia sucks. That's one of the things we're really working on this time. In addition to the back pain, hip and pelvis pain, thumb pain and the MS. The fall I took in May just started a downwards spiral that we're trying to get a handle on. As we all know, stress exacerbates MS. Trying to find a balance when LIFE is filled with stress is challenging enough. Throw in unexpected negative stressors and often MS feels like a battle I can't win. That's where sheer grit and determination comes in as well as the willingness to try "alternative" treatments. I refuse to give up. I have to much NOT to give up for. Looking back it;s been a really challenging 6 months. The fall, the stress, the summer filled with exacerbation's, the chair and the loss of Valor last week. I often wonder when life is going to get any easier. Then i watch the news and realize it could be so much worse. My challenge is my health. I have a husband who loves me unconditionally and a large circle of friends an family that love and support me. I'd rather have that than health and be alone like so many are.

Wednesday, November 12, 2008

Treatment Day Three

I'm starting to feel some relief with the pain in my hip. It's not gone, but at least the "edge is off". Same with the thumbs. By Saturday I should notice an even bigger difference. I am hooked up to the machine as I type. I noticed something today. I've been in the chair about 2 months now and my arm strength has really improved! I can wheel myself pretty well in the morning. In the afternoon I tend to be toast as the MS fatigue wipes me out, but I'm pretty proud of myself. In the beginning I had wimp arms. I would be lucky if I could push myself 10 yards. Seriously pathetic. Heck of a way to get your arms in shape, but hey, whatever works! The weather here is seriously YUCK. Has rained every night and been gray every day. The worst part is the humidity! Like getting hit in the face with a hot wet towel every time you go outside. Needless to say, staying IN has been exactly what we've been doing. We go straight to the clinic for my treatments then back tot he hotel. Fortunately, the food at the hotel is both reasonable and we have not been doing anything remotely touristy. Which has actually been nice. Got to spend some quality time with hubby and relax. Down time is always welcome. It's been such a stressful past few months. It's nice just to relax. Anita fly's in tomorrow and hubby fly's out. I'll miss him, but it will be nice to have some serious girl time with Anita. We always seem to have lot's to gab about!

Tuesday, November 11, 2008


No matter how strong your faith or how strong your sense of "self" is.....we are bound to ponder the "WHYS" of life. Whether it be a natural disaster that occurs and you watch the rescue efforts on T.V. from the comfort of your living room, or a personal struggle or hardship. You look up to the heavens and ask "WHY". We all come to points in our lives in which "WHY" is the predominant question in our life. Unfortunately, there is seldom a clear answer. So, we are left to move forward, one step at a time. Hopefully, successfully over coming whatever struggle we were wading through. I myself have had such tremendous highs this year as well as traumatic lows. It seems life IS a roller coaster. Full of heart pounding highs and stomach dropping lows. The highs of my life this year was marrying my best friend, dancing at my wedding, seeing my family again and realizing how deeply my friends loved me (as well as seeing WHO they really are). The lows were the MS, the fall, and the loss of Valor. Fortunately, God is wise. He makes sure, like a roller coaster, the highs are mixed with the lows. I'm not exactly sure where I am on the coaster ride. Lately it seems that I've been on the down slope of the coaster. Holding on for dear life as it screams down. I keep waiting for it to hit the "dip" and begin the upward climb again. Allowing me to take a deep breath, wipe my palms of my jeans and perhaps laugh while I await the next dip.

Treatment Day Two

Spent two hours at the clinic today being tested and "hooked up". I'm using a new protocol to help with my hands. I'm hooked up with six electrodes on one hand and two one the other as I type. I'll run the protocol for 20 minutes then switch the electrodes from hand to hand. I swear, it looks like something out of a science fiction movie! I'm not seeing a big pain level difference yet. However, i HAVE noticed the "edge" of the pain is gone. I expect to see improvements everyday until the pain is gone. I met a woman in the clinic today who came for treatments with her lungs. She has been receiving treatment for several months and her pulmonologist took her off ALL her meds on her last visit with him. Her pulmonary function has improved dramatically and she no longer needs her inhalers, steroids and other assorted medications. There was also a woman there being treated for pain and Dr. Rhodes is weaning her off her fentanyl and Oxycontin. Can you imagine? Being in such pain they put you on the hard stuff and using a machine with specific protocols designed for you gets you off all of them. You would think insurance companies would jump at the chance to save the billions of dollars they spend each year on pain medication for chronic pain sufferers as well as for those with MS and all the other chronic diseases this machine has been successful at treating. The resistance makes little sense to me.

Monday, November 10, 2008

Day One in Texas

Wrapping up day one in Corpus Christy. Was only at the clinic for about two hours. Testing showed it was definitely time to change my settings (but I already knew that). The big focus for today was treating my hip pain. We ran a few protocols on the new settings. It will be a few days of running protocols to really start seeing a difference, but I know it works. I am still amazed at the success the clinic has had with treating not only chronic pain patients, but MS patients, renal patients and diabetics to name a few. It's not about "curing" the illnesses but treating the symptoms. This leads to a higher quality of life, and who doesn't want that! I'm here for almost 2 weeks this time, so we will have more opportunity for running new protocols and trying different beat frequencies. The weather here is overcast, windy and HUMID. It rained last night and looks like it could easily rain again tonight. The rest of the week is supposed to be beautiful after Wednesday. Mark fly's home Thursday and a girlfriend fly's in to be here for the rest of my treatments. Of course, as "Lucy and Lucy" we're bound to generate a zany story or two!

Sunday, November 09, 2008

In Memory of Valor

I haven't posted the past few days as I just didn't have the desire. Valor passed at 2:30 p.m. yesterday. He passing was peaceful. His head was in my lap and my voice was the last thing he heard, my face the last he saw. The vet stated that he agreed with our decision and it was time. It made it no more painful for us, but we know that ending Valor's suffering was the right thing to do. I cried myself to sleep last night, holding onto one of Valor's toys. I woke with it wrapped in my arms this morning. Fortunately, we had an early morning flight and, as we overslept, there was no time to think about anything else but making the plane. It wasn't until we were in the air that Valor was mentioned. The healing process is going to take some time.

Wednesday, November 05, 2008

Valor Update

Well, Mark heard from the vet about Valor's lab result. Kidney failure it is. The good news is that the shot Valor received from the vet yesterday to calm his tummy seems to have helped him. He kept down the small amount of mashed chicken, rice and green beans he had for dinner last night. His water consumption is still down, but Mark noticed the water level in his water bowl was a little lower this morning. Now, it's decision time. Valor is almost 10 and we have seen a big change in the last month, not to mention the five months before that. Do I selfishly hold on to him as long as I can, and he suffers. Or do I make a decision and help Valor go chase those butterflies in heaven sooner than I want him to? My head has already made the "rational" decision, but my heart is having a tough time.

Energy update

In spite of the emotional stress with Valor right now, I am pleased to say I'm seeing improvement (FINALLY) with the MS. As you know this summer was one long exacerbation that wouldn't ease up. As a result I had all kinds of new challenges. Optic Neuritis was a new experience and a wheelchair became my friend. What a summer! Being the scrapper that I am, I refused to just sit in a wheelchair and feel sorry for myself. (WAY to counterproductive). I tried to walk everyday. Even if all I could walk was from the chair and take two step to the recliner. Now, I'm probably spending half the day on my feet and half the day in the chair. It depends on my energy level and how strong my leg feels. This past week my energy level has really boosted up. In fact I felt so good on Saturday I did too much and as a result was down Sunday with zero energy. I hope to get to the point where soon I will only use the chair for energy conservation. Meaning if I'm out and about to shop etc. My right eye is a bit better, but still has some to go. Other MSers have told me that after their bouts with optic neuritis it took some of them a year before their eyes were "back to normal", so I have to be patient with that. At least I don't have a large black area in my vision anymore. My hands are still hit and miss. My fine motor skills with my hands can vary from day to day. So that may be something that just "Is the way it is". (You know I wrote that just for you Mom :0)~ So, it seems my body IS rebounding from the exacerbation. Thank God. A reminder to never give up. No matter how tough things are, or how bad they seem. Give the challenges to God, then give him time to work.

Tuesday, November 04, 2008


Been a heck of a few days. My dog, Valor, who is almost 10 has been sick. I've noticed a decline in the past few months and now he's sick. Each feeding is a gamble it seems. His ability to keep food down is hit and miss. We're now mashing green beans for him, soaking his kibble until it's mush and mixing it with rice. Feeding him about 2 tablespoons at a feeding to try and help his stomach keep it down. More worrisome is the fact he has almost completely stopped drinking and he's had some swelling in his rear legs. Today he's going back to the vet for the third time in 2 weeks. I pray I don't have to make a difficult decision. I was always hoping that when his time came he would go quietly in his sleep, chasing a butterfly to the heavens. Not looking at me with sad brown eyes, as if he's telling me "It's almost time". It's amazing how much our "pets" come to mean to us. For some, they will say, "he's just a dog" and don't understand the emotional attachment. Some, will understand completely as their "pets" are just as much family to them as Valor is to my husband and I. Valor of course, is so much more. Our friends know his history and how Valor and I became a "team" and I can't imagine my life without my "partner". I'll keep everyone posted on the blog. Please say some prayers for Valor. I pray for more time. I pray the vet can come up with a "magic pill" to give us more time, and if he can't I pray that God gives me the strength to do what's best for Valor and not what's easiest for me.

Saturday, November 01, 2008

Investigators Recruiting Participants with MS for Studies of Alemtuzumab

Here are the reports regarding the Phase 2 trial of Alemtuzumab.

Alemtuzumab Results Published: Reduced MS Relapses and Accumulation of Disability in Phase 2 Trial. Treatment with alemtuzumab (Genzyme Corporation) reduced the accumulation of disability and the frequency of relapses in people with early relapsing-remitting MS, compared to Rebif® (interferon beta-1a, EMD Serono, Inc. and Pfizer, Inc.). Those taking alemtuzumab had a 74% reduction in the risk of MS relapse compared with those on Rebif, and a 71% reduction in the risk for sustained accumulation of disability. Those on alemtuzumab, an immune-suppressing monoclonal antibody, experienced adverse events more frequently, including immune thrombocytopenic purpura (a serious bleeding disorder), thyroid adverse events, and infections. The results, originally reported at medical meetings, have now been published (New England Journal of Medicine 2008 359;17: 30-45), and two Phase 3 trials are currently recruiting participants with relapsing-remitting MS.

Background and Details
Alemtuzumab is a humanized monoclonal antibody directed at CD52 (a protein on the surface of immune cells) that is currently approved by the U.S. Food and Drug Administration as a single agent for treatment of patients with B-cell chronic lymphocytic leukemia. Its ability to target immune cells has led investigators to test its potential as a treatment for relapsing-remitting MS.

Drs. D. Alastair Compston, Alasdair J. Coles (University of Cambridge, UK) and colleagues have now published results of phase 2 clinical trial that compared high and low doses of alemtuzumab (given by IV infusion over three to five days once a year) with Rebif, a standard MS therapy, in 334 people with early relapsing-remitting MS who had never taken any other disease-modifying therapies. The primary outcomes were the time to sustained accumulation of disability and the rate of relapse.

Those in the alemtuzumab groups were slated to receive two to three cycles of the annual infusion. However, dosing was temporarily suspended due to the occurrence of immune thrombocytopenic purpura (ITP), a rare condition in which low blood platelet counts can lead to abnormal bleeding. After the first cases of ITP occurred, one of which was fatal, Genzyme implemented a patient safety monitoring program which includes patient and physician education and regular contacts with patients. A total of six alemtuzumab-associated ITP cases were identified and, when necessary, promptly treated.

Most of those on alemtuzumab received their second infusion cycle (207 out of 223 total), but fewer went on to receive a third cycle (46 out of 223). The results reported in this publication follow the participants out to 36 months of the study.

The results were nearly the same for the two doses of alemtuzumab, so the data for patients receiving this drug were pooled for the comparison with Rebif. After thirty-six months, those taking alemtuzumab experienced significant reductions in the risk of MS relapse compared with those taking Rebif (74% reduction, with an annualized relapse rate of 0.36 for Rebif versus 0.10 for alemtuzumab) as well as significant reductions in the risk for progression of disability compared with those taking Rebif (71% reduction). Among secondary outcomes that were measured, significantly more of those on alemtuzumab remained relapse-free at 36 months (52% for Rebif and 80% for alemtuzumab). In addition, the mean disability score (EDSS) for those on alemtuzumab improved slightly (by 0.39 point) while the mean score of those on Rebif declined slightly (by 0.38 point).

Among other side effects reported in the Phase 2 study, patients who received alemtuzumab were more likely to develop thyroid disease and mild to moderate infections (i.e., infections requiring no specific medical intervention or requiring only oral medication). Thyroid problems are reported to have been easily detected and treated. Patients who received Rebif experienced injection site reactions, fatigue, flu-like illness, headache and abnormal liver function tests.

Mary Ann Holm, MSW
Manager, Clinical Services

National Multiple Sclerosis Society
Southern California Chapter
2440 S. Sepulveda Blvd., Suite 115
Los Angeles, CA 90064
Tel +310 479-4456 x121

If you would like more information, or pehaps be interested in participating the the phase 3 trail go to this link for more information:

Halloween Wrap-up

Halloween was great at my house. My husband and I sat on the porch and passed candy out to all the kids. We had OVER 100 fairies, witches, pirates and other assorted characters stop by. (We had 130 candy bars, gave ONE to each little ghoul and had only 3 left. We actually went inside with kids still out as we didn't want a group of kids come up and not have enough candy for the group. We know next year to have 200 bars)! An amazing number, especially since it was RAINING! Of course, the little one's are always my favorite. They are just too cute. We had several that could barely walk, holding mom or dads hand when they came up. Of course, it made me miss my grand kids even more as they are too far away for me to see their costumes. However, I have to say my favorite of the evening was a teeny one in a skunk costume who darted by the house. Too excited to even stop for candy. We laughed quite a bit over that one. With the rain it was a bit on the cool side, not to mention WET! That sure didn't stop the fun though. I hope everyone enjoyed their Halloween as much as we did our!