First Injection

Current Meds:
1. Rebif (1 injection 3 times a week)
2. Tylonol
3. Citalopram 10mg once daily

Current Symptoms
Physical: slight tremors in left leg and hand (usually worsens with physical exertion)
Sensory: Optic neuritis in left eye
Psychological (memory/mood): none
Medication side effect?: muscle aches and pains, slight headache, slight injection sight reaction.

Well, I survived my first injection. I think I can handle this. I was a bit nervous at first but it was nothing after the first one I think. I didn't mind it that much. The side effects are a bit annoying but nothing serious. My muscles are really sore, especially my abs. But everything hurts right down to my fingers.

I also have a slight headache, but nothing a Tylonol can't fix. I'm going to take one just before sleep in a few minutes. That'll help a lot.

I had a slight bit of pain around the injection site for an hour or so after the injection, nothing major. Looks like I'm taking to it alright.

I have to mention, I had really great support from my family and my girlfriend. They were great and attended the training session with me to learn how to do the injections. Jessi said she was proud of me. :) It was really nice.

I must be off to bed now, before I fall apart. :)

REBIF

Some information about my treatment of Rebif which starts tomorrow, Friday, August 26, 2005.

What is Rebif?

Rebif is the brand name for interferon beta-1a made by Serono. Interferons belong to a family of proteins which occur naturally in the body, helping to regulate the body's immune system and fight disease. There are three types of interferons, alpha, beta and gamma, and it is interferon beta that has been clinically proven to be effective against MS.

What are interferons?

They are naturally produced proteins that belong to a group of chemicals called the cytokines (a protein secreted by a cell to communicate with other cells. They play an important role in coordinating the immune system. Cytokines [literally, cell movers] signal the immune system to fight infection and to stop the immune response when infection has been eliminated.) Interferons can also help protect against viral infections by inhibiting viral growth and reproduction.

What does interferon beta do in MS?

Interferon beta is believed to affect changes in the immune system in three ways:

1. It affects the production of cytokines, increasing those that reduce inflammation and reducing those that produce inflammation. (In MS, an attack on the myelin sheath-a sheath made up of lipids [fats] and protiens whch surrounds the nerve cells-results in swelling.)

2. It helps control the function of T cells (a type of specialized immune cell which plays a central role in the immune system and are active in producing multiple sclerosis symptoms).

3. It helps control the movement of T cells into the central nervous system, where they can trigger changes that cause multiple sclerosis.

How is rebif made?

Rebif is manufactured by a special biotechnology process that uses mammalian cells (Chinese hamster ovary cells) to produce an interferon that has components similar to that of natural human interferons.

How does Rebif work?

The precise mechanism of action of interferons in MS is still under invertigation. It is thought that Rebif works by regulation the body's immune response against myelin (the body's natural electrical insulator: it speeds up the conduction of electrochemical messages between the central nervous system and the rest of the body). Basically, it stops the body from destroying its own myelin. Although Rebif is not a cure, it can alter the course of MS by delaying disability.

What to expect from treatments of Rebif:

Rebif has been shown to help reduce the number and severity of attacks, slow the progression of physical disability, reduce the number and volume of lesions or plaques (areas of injury or damage--in MS, an area of inflammation and demyelination in the brain or spinal cord) as seen on magnetic resonance imaging (MRI), reduce the requirement for steroids and reduce the number of hospitalizations for treatment of MS.

Because MS is different in each individual, you need to have a realistic idea of what to expect from treatment. It is difficult to predict how an individual will respond to the treatment. You may still have MS attacks, this does not mean that Rebif is not working. The number and severity of attacks, the progression of the disease, and the number of active lesions may all be reduced compared to what they might have been without Rebif treatment. This is why Rebif treatment should be continuous, even during a relapse of MS.

How is Rebif supplied and stored?

Rebif comes in prefilled syringes. They should be stored in the refrigerator (between 2 and 8 degrees C) in their original box and protected from light. They can be stored at room temp (up to 25 degrees C), but not for more than 1 month. DO NOT FREEZE.

What are the side effects of Rebif treatment?

Rebif is generally well-tolerated. The most common side effects seen in clinical trials were flu-like symptoms (fever, muscle aches, headache) and injection site reactions. Flu-like symptoms may last at least 3 months but tend to resolve with continued treatment. The use of acetaminophen or ibuprofen 30 minutes before injection may help reduce these symptoms.
Injection site reactions such as pain, redness, and swelling are common, but are manageable. Injecting at bedtime may be useful as you can sleep through the side effects.

Interferons can potentially disturb liver function. Symptoms of liver disorder include: loss of appetite accompanied by malaise, fatigue, nausea, vomiting, abdominal pain, dark urine, easy bruising of the skin, jaundice, or pruritis (itching).

*Information provided by MS clinic nurses: Josee Poirier, Colleen Harris, Jeannine Christopherson, Cathy Edgar, and Ruth Grigg.

A package.

Current Meds:
1. Citalopram 10mg once daily

Current Symptoms
Physical: slight tremors in left leg and hand (usually worsens with physical exertion)
Sensory: Optic neuritis in left eye
Psychological (memory/mood): none
Medication side effect?: none

My package arrived yesterday from Mississauga, ON. At first I was thinking about running down stairs with eager anticipation, like it was Christmas and I was checking out my new bike from the fat man. Then I realized what it was I was about to run to. So I waited a little while. Then acceptingly took the package upstairs with reservations, oh and a knife to cut the tape.

I opened it. What could be in it. Well, a letter on top which I quickly read welcomed me to the multiple support program. Then I found a huge pile of documents and their most recent publicaion of Rendezvous. I then found another Rebif book, the one I had left at Jessi's; turns out she could have kept it anyway. So now I can do my Rebif report. :)

More from the box... there was this really neat looking bag with all kinds of compartments and stuff on it. Here's what the entire thing contained:
1. A needle disposal unit.
2. A Rebiject II self injector unit
3. A larg bag of alcohol swabs
4. Two bags of Rebiclips, one colored white labled (20%) the other green labled (50%)
5. A mouse pad (I think)
6. Instructions for the Rebiject
7. And a case to hold my injections safely and also keep them chilled. It has a cooling pack and a syringe holder.

And that's it. Oh yeah, the bag thing smells like a hospital too. Yuck.

Heart stuff and Rebif

Current Meds:
1. Citalopram 10mg once daily

Current Symptoms
Physical: slight tremors in left leg and hand (usually worsens with physical exertion)
Sensory: Optic neuritis in left eye
Psychological (memory/mood): none
Medication side effect?: none

I did the follow up on the EKG with Dr. Dorar today and he is sending me for another one at the New Waterford hospital. He's going to get the cardiologist to read it and send him a report. He's not sure what to make of my borderline reading. Hopefully it's nothing.

I'm awaiting my supplies in the mail from Rebif. I received the medication (in prefilled needles) last week by bus (Acadian Lines) and it is chilling in the fridge. The nurse is coming this Friday at 4 to show me how to administer the self-injections. The rebif kit should be along before the nurse gets here.

I forgot to grab the rebif information book when I was at Jessi's last night (I let her read it while I was on vacation) so I don't have anything else to say about it until I can remember to grab it sometime. Can't believe I forgot it again. lol

I have to say I am really impressed with the rebif support system. They are so fast. They called the day after I made my decision and sent the meds. And are continuing to call and check up on me on a regular basis. Really impressive. And so nice! Very nice to have these people on your side. :)

Dr. Leckey Appt.

Current Meds:
1. Citalopram 10mg once daily

Current Symptoms
Physical: slight tremors in left leg and hand (usually worsens with physical exertion)
Sensory: Optic neuritis in left eye
Psychological (memory/mood): none
Medication side effect?: none

It's always like getting good news when I come back from Dr. Leckey's office. I had wondered about a few different things and today I got some more answers. It turns out that although the ON seems to get worse when I work out I'm not doing any damage to my eye. I can't remember what it is called when you have a heat sensitive reaction to ON but it is quite normal. Dr. Leckey told me it could take between 18 to 24 months for my ON to heal given that it was a very major attack and that I have RRMS (Relapsing-Remitting MS). He also said not to get glasses to solve blurred vision because it will be a fluctuating problem as the ON heals. So it could be some while before I can compete in Judo without the danger of sustaining an injury becuase my lack of vision puts me at a disadvantge when sparring.

We also decided that Rebif is the drug that may benifit me the most. They have sent in the request for the drug and I should be expecting a call from the drug company sometime this week. Sharon said that they are usually pretty quick to get it here. The company will bus it down from Halifax and I'll have to pick it up at the bus station in Sydney. I'll write more about the drug later once I get all the facts on it.

I agreed to participate in a study of the quality of life on the drug which is sponsered by the government. I agreed since the government is picking up the tab for the $20,000 drugs. There will most likely be a series of survey's over the next decade or so as the drugs are relativly new and research is ongoing. I will gladly donate myself and any patient information that may help develop treatments for the disease. However, Rebif is probably the most state-of-the-art treatment available to me.

Dr. Leckey also recomended that I go to the MS society for diet instructions and exercise regimes. He said that its pretty much the same thing that any doctor would tell you to stay healthy. Exercise being more important than diet as no research has found any change in MS relating to diet. Thus there is no "MS Diet" that should be adheared to, but generally keeping oneself in shape and eating right goes a long way regardless of disease. It just seems that now I have a better excuse to keep myself fit than ever (not that I ever really let myself go at any point).

So with all that straightened out, there is no longer a need for me to go to the MS clinic in Halifax. I'm satisfied with the treatment I'm getting and my doctors and hospital support team. If it ain't broke, don't fix it is the general rule I think. So, nothing terribly exciting, just have to wait to get in touch with the drug company who will send nurses to my house to administer the first dose and train me to inject myself. Then I'm off for a series of blood tests once a month for 6 months to check liver functioning, which I have the slips for already. So everything is ready to go. Just awaiting my new medications.

Moments of Mental Fatigue

Current Meds:
1. Citalopram 10mg once daily

Current Symptoms
Physical: slight tremors in left leg and hand (usually worsens with physical exertion)
Sensory: Optic neuritis in left eye
Psychological (memory/mood): none
Medication side effect?: none

And so there are moments when no matter how hard I fight it, despair grips me in its talons. I've learned more than I ever wanted to know about MS and yet I've never really seen what it can do. That is until a few brief moments of sobering reality while watching W-5 on ATV the other night. They were discussing a new radical treatment for advanced MS cases in which they extract stem cells from the patient via bone marrow (hip and pelvic bone) and blood, purify the cells, then proceed to eradicate the existing immune system in the patient through chemotherapy, then-if the patient survives-inject the old purified stem cells back into the patient hopefully producing an MS free immune system.

The procedure has taken at least one life so far. They need 28 casses to report failure or success. I don't know what they are at now... but test subject no. 6 has died, that is certain. But seeing what MS has done to these people, death seemed an acceptable risk in these particular cases.

I couldn't help feeling affraid. I don't know what type of MS I have yet. Will I end up like that? My biggest fear was always to be alive but not in control of my self. With that prospect now a reality it takes a lot of strength for me to look in the mirror everyday and not feel a small amount of despair. I will never give in to it. I can't. But last night I had a few terrifying moments where I did let that thought sink in. Lucky I was with people who loved me and could console me.

Today, I'm feeling like I finally understand the gravity of this disease. For a while I was just relieved to know I had it and wasn't loosing my marbles, but now I am concerned for what type of MS I have and how I'm going to react to the treatment I start soon. Though not as severe as chemotherapy, it is a powerful drug and I don't react well to drugs period, weak or strong.

I try to stay positive, but last night really hit home for some reason. I want to talk to someone who was or is in my position. I feel only they could have something meaningful to contribute to my thoughts. Until then, I guess I'll have to prepare myself for what comes next: treatment preparations on Tuesday.

Edging forward, falling back, spinning round and round, trying to keep my balance, seeing through the blinding darkness...

More on Optic Neuritis

Current Meds:
1. Citalopram 10mg once daily

Current Symptoms
Physical: slight tremors in left leg and hand (usually worsens with physical exertion)
Sensory: Optic neuritis in left eye
Psychological (memory/mood): none
Medication side effect?: none

I decided to do a little more research on optic neuritis to see if the amount of exercise I'm getting is potentially harmful to my condition at the advice of my councillor. What I have found is pretty much what I've discovered on my own through the progression of the condition.

But here is a little more information I pulled from a website that deals with eye conditions, it's called StLukesEye.com:

The following symptoms of optic neuritis may not occur in all cases; however, they are the most common problems associated with the condition.
-Pain with eye movement (more than 90% of patients)
-Tender, sore eye
-Mild to severe decrease in central vision
-Dull, dim vision
-Reduced color perception
-Decreased peripheral vision
-Central blind spot
-Fever
-Headache
-Nausea
-Decreased vision following exercise, hot bath or shower (activities that elevate body temperature)

The last one seems to be my biggest problem. I can't workout without a worsening of that symptom. But is it dangerous to exert myself as I normally would like to do?

I hope not. I'm not going to live a sedentary lifestyle; I'm not going to let MS sideline me. The only way MS can beat me is to keep me from being active, which to me is a totally mental fight. There are always activities to do--even in a wheelchair (God forbid). It's my responsibility as an MS patient to stay fit.

One source had this to say about exercise:
Some people with MS will experience numbness, tingling, or blurred vision when they exercise. These symptoms are temporary and decline within 35 minutes of stopping. They should not cause alarm. But you may want to avoid driving yourself home alone until you are back to your baseline or know that you are not affected by this.

However, it says nothing of my current symtoms. I may have to seek a physician on this one. I have some appt.'s coming up so it's not a problem.

Advantages of fitness:
Exercise builds a reserve of muscle strength and cardiovascular function. Then, if an attack or exacerbation of MS calls for a time-out from physical activity, the reserve is available. Exercise can be therapeutic for such MS-related problems as spasticity, poor balance, depression, fatigue, and emotion problems.

Another of my problems: caution: exercise may be so gratifying that it can lead to overdoing. Then comes fatigue and increased possibility of injury. Apparently, studies show MS patients who work more slowly at the beginning achieve more in the end. Oops, that is so hard to do. I want to jump right in. It's hard for me to hold back at all when it comes to this stuff. I'm really terrible at taking it easy.

I've been trying swimming, I find it really hard... anything that involves legs tires me out quickly. I've never been a good swimmer but good grief, even running is hard now a days... my legs just don't have it anymore. Hopefully this is only temporary. I'm almost back up to a mile running now. I keep thinking of when I was running 5, but I have to learn patience (so bad at that).

To end this post, here is some information that may be useful to my Judo friends and workout partners:

Like rude intruders, MS symptoms show up unannounced, without consideration for personal plans. Instructors, teammates, and exercise partners should be forewarned of the possibility of last-minute cancellations. Those unfamiliar with MS may need a short description of how symptoms can come and go.

Sometimes symptoms show up that don’t call for bowing out of an activity altogether, but do require making temporary alterations. Explaining this to class instructors ahead of time helps avoid embarrassment. Discuss any limitations that your MS is posing and ask about ways the activity might be modified. Some people might also want to request that corrections be given in private after class.

Members of an exercise group will need to tell friends or teammates that MS is imposing some restrictions. Be specific. Explain, for example, that optic neuritis is making it difficult to see a ball, or that balance problems mean you will need some help to climb out of the canoe.

Peace;
Doug.

Med's Update

Current Meds:
1. Citalopram 10mg once daily

Current Symptoms
Physical: Weakness and slight tremors in left leg and left hand (occasinal, usually comes on with extensive exercise)
Sensory: Optic neuritis in left eye
Psychological (memory/mood): none
Medication side effect?: jitters and restlessness

I've stopped taking the Lorazepam last night and I didn't get the greatest sleep. I missed a training opportunity this morning due to lack of sleep, but that's ok. I think what I will do is take .5 mg ever second night for a week or two to help me ween off a little more. I would like to only take it when I need it rather than need to take it everynight. I've probably built up a little dependance on it and I want to undue that ASAP. I feel really uneasy today so I want to get a good sleep at least every second night if possible.

I'm really looking forward to seeing Dr. Leckey. I'm anxious to get my appointment with the MS clinic in Halifax and start some treatments before anything else happens. Dr. Dorar gets off vacation tomorrow and I'll make an appointment with him tomorrow as well to follow up on that EKG. In the mean time, I hope today will be kind to me.

Undetered...

My meds and symptoms haven't changed at all, except apparently my memory may be slipping a bit... :S I think some fatigue may be behind that as well, however. I've been hitting the training a bit too hard perhaps... I should have eased into it but I've never been one to ease into things. Besides... I'm still kicking... and I know when to stop and rest if I go to far. (Which usually happens just after I've gone to far.)

Something totally unexpected happened tonight... (well a lot of unexpected things, but let's not get into all of them) I was promoted to Nikyu at judo (Blue belt). That made my evening. I'm so proud I've made it this far considering. Apparently I landed a really nice yoko-guruma on Sensei Terry in demonstration. I had a few more tricks up my sleve but I didn't want to spill all the beans in one night ;) plus I wasn't sure if I could pull them off... lol it's been a while since I stepped onto a mat... but OHHHHH it felt so good. I really missed that stuff.

I still have to make a doctors appt about my heart. I called today and there was no answer at Dr. Dorar's office. And Leckey is still away on vacation. Until the 16th... which is the day I have an appt with him and Sharon, so apparently I'm the first order of business. I'll make an appt for the halifax MS clinic then too. So until I have something more substantial to report, that's all my news for now.

Nikyu - blue belt.

Update / Training

Current Meds:
1. Citalopram 10mg once daily
2. Lorazepam .5mg at bedtime

Current Symptoms
Physical: Weakness and slight tremors in left leg and left hand (occasinal)
Sensory: Optic neuritis in left eye
Psychological (memory/mood): none
Medication side effect?: none

Time for an update. I survived the family vacation, with only one trip to the hospital I might add ;). I'm feeling much better since I arrived at home. Maybe it's the familiar ground or something. I just want to relax a bit and not worry about stuff for a while.

To get back in shape for Judo I have resumed training. I began running again plus some stick work in the yard, and a few various exercises I've adapted to fit my program. I noticed that when I run or work out at all the symptoms seem to intensify a bit. For example when I run my eye sight worsens slightly and when I do exercises demanding upper body strength my left hand gets shakey and tremors afterwords.

I guess the proper training program would include knowing my limits. I will tire faster than normal and that's something I have to live with. Plus I have to get that heart thing checked out, sooner than later, to make sure I'm ok to push a bit because god knows I love to push myself beyond my limits. Staying fit between episodes will be my big challenge but it will hopefully enable me to recover more quickly and help to keep my mental stablitly that I've almost lost a few times.

My eyesight doesn't seem to be progressing much beyond its current state. I'm hopeing a trip to the Halifax MS clinic before the end of August will help rectify anything there. Still being patient with it however, which is super slow going and always a challenge. Have to stay positive and get my body back into a state of good fitness. Oh, and get rid of the little weight I have gained on the Prednesone. ;)