It Depends Where You Inject

If I did not believe, Copaxone was slowing the progression of my multiple sclerosis. I would not be taking the daily injections. I quit injecting Copaxone in my right buttock two years ago. As of December 7, 2010, I will no longer inject Copaxone in my left arm. It is now December 13, and my left arm is still sore. Immediately after removing the needle from my arm, my arm went limp, pain radiated from my shoulder blade to my fingernails. Trying to lift my arm was like trying to pick up a ton of bricks. I counted the minutes thinking to myself, "In about 15 minutes I should be able to move my arm." I sat in bed watching the clock; it was two hours before I could lift my arm to my face and several hours later before I could lift my arm over my head.

During that time a strange sensation flooded my body, my brain felt like a circuit breaker going haywire, then an extreme fatigue invaded my body, a fatigue I am still experiencing as of today. I have been doing great and feeling fine when I was not taking my injection after my flu shot occurrence. Yes, I had some pain here and there and slight immobility because of nerve pain in my foot during my hiatus from taking a Copaxone injection. Where there is belief, there is doubt, I am questioning is all this is worth the unknown of what happens after an injection.

There are times I do not know what to do when it comes to treating my MS. I do know I will not be taking an injection in my left arm again. There are only five other places I can inject Copaxone. Unless, for some other reason...If or when I experience what recently occurred when I injected my left arm and what I experienced after an injection in my right buttock over two years ago happens in the remaining places I have left to inject.

Regardless of my belief...
There will be no reason for me to continue taking Copaxone.

It's Been Too Long...

photo credit: rowox.com

Well, I did not bounce back quickly after taking that dreadful 3-point flu shot with H1N1 being one of the components. I was literally out of commission for 32 days ironically multiple sclerosis was not the reason why. I will NOT take another flu shot if H1N1 is one of the components. With that said, let tell you what the two doctors I see the most, my primary care and my neurologist think about this year flu shot.

My neurologist does not believe the flu shot caused me so much suffering for thirty-two days. My primary care does believe the flu shot caused my distress because of the H1N1 and my immune system already compromised having MS. Hmm, now whom do you think I trust the most, and I am beginning to question my neurologist for refusing to believe the H1N1 component in this year flu shot could cause distress for MS patients.

It has been since my last post that I have taken a Copaxone shot, the way I was feeling taking a daily shot was the last thing on my mind. When I began feeling better, the thought of sticking myself again everyday kept me from doing what I know
I need to do. After, organizing my medical records last night into one large binder, I could not help but read my history.

I know I complained about Copaxone when I experience an IPIR. However, I honestly believe Copaxone has slowed the progression of my MS according to my MRI reports since 2003 to the present. BELIEVING is what gives us HOPE and keep us MOVING. Therefore, as of December 01, 2010, I will be taking my Copaxone injections again, and I will try my best not to stay off course as long as I did this time.

Finally, I have a problem with the CDC deciding to include H1N1 into this year infulenza shots leaving us without a choice. The H1N1 vaccine was rushed because of an outbreak of the swine flu and a fear of a pandemic. As far as I am concern the H1N1 was UNTESTED because it was rushed in the hopes of preventing a pandemic; UNTRIED because a mass amount of people refused the vaccine during the outbreak; and EXPERIMENTAL because it was mandated into this year influenza vaccine.

Copaxone Price Shock

Presently, I cannot complain with how much I pay for prescription medication, but it is just a matter of time I will have huge out of pocket deductibles for my medications. I am fortunate to have the benefit of getting most of my prescriptions filled at a Military base pharmacy at no charge. However, I noticed prescriptions I take are slowly being phased out and I have no choice but to go to an outside pharmacy. In the past my co-pays use to be $3.00 generic and $9.00 brand. My co-pays are now $3.00 for a generic, $9.00 for a brand formula drug and $22.00 for a brand non-formula drug. If you are thinking most of my drugs are now brand non-formula...ding ding you are correct!

I made a conscious decision to not become dependent on the many drugs MS'ers are prescribed for every nuisance the disease bring our way. Yes, my neurologist did not like me taking most of my drugs as needed. My rationale to her dislike is...I am the one living with MS and I know my body better than anyone. I am not trying to play doctor, but I do know that I feel a lot better taking medication as I need it than taking it every day when the MS symptom or symptoms are no longer present.

However, Health Care Reform is definitely needed in America. Although, IMO what is being called Health Care Reform is a bunch of BS...KO eloquently tells you WHY! Washington needs to stop the RAPE of American citizens from the fraud and abuse of the Health Care and Big Pharma Industry...AND Washington needs to stop the BS political games at our expense! We are being raped with higher deductibles and co-pays because of the bullshit I just discovered. It is a damn shame how one pharmacy chain can charge almost twice as much for Copaxone and not be held accountable to WHY they are charging more than another reputable pharmacy chain.

Case and point, for years I have been filling my Copaxone prescription at the grocery chain Kroger Pharmacy, until December of 2008, I decided to have my Copaxone filled at Walgreens. Now I know how Walgreens can afford to have a pharmacy on every corner in about every state. I always assumed my insurance was paying Walgreens the same as they did Kroger after my co-pay until today. Express Scripts never sent me an Explanation of Benefits before today. They were not doing me any favors, what they were doing was soliciting me to mail order my Cymbalta through them; Which I plan to do because I can receive three months supply for $22.00 a month. Duh, who would not want to save $44.00? The SHOCK on the EOB was the amount TRICARE was paying Walgreens after my co-pay; I thought it had to be some sort of mistake. Therefore I went and pulled my 2008 prescription profile to see if Copaxone had a 100% price increase.


I discovered in November 2008, after paying my $9.00 co-pay at Kroger's for my Copaxone, my insurance paid them $1,783.00, which was an increased from 1,666.97 three months prior. However, in December 2008, I discovered after paying my $9.00 co-pay at Walgreens for my Copaxone, my insurance paid Walgreens $2,806.00 that is a freaking $1,023.00 difference. ..WTF!

Here is the industry BS according the EOB from Express Script I received today. Walgreens submitted a bill of $3,005.51 for my Copaxone, my insurance allowed amount is $2,562.19, I paid my $9.00 co-pay and TRICARE paid Walgreens $2,554.53. That amount is still MORE than what Kroger charges. Walgreens is pricing their drugs pass the allowable amount, knowing they will get paid the maximum amount allowed by my insurance...I have a bridge to sell you if you do not think the system is broken! It does not take a rocket scientist to see what the eff is going on with the industry.

Hell, its just a matter of time I will be paying for this fraud and abuse. It does not make any freaking sense how one monthly disease modifying drug cost $30,746.28 a year...at that rate a cure will never be found. TRICARE should have never paid Walgreens that much money. TRICARE would have been more cost efficient and proactive in their efforts of informing ME the drug I depend on daily to slow the progression of my MS cost them $21,396 a year at Kroger Pharmacy.

TRICARE listen up, I am going to save you $9,350.28 a year...I am switching my Copaxone prescription BACK to Kroger Pharmacy. How about a THANK YOU!

Against Medical Advice

There is no doubt in my mind had I not had insurance the hospital would have booted me out when all indications were that I was stabilized from the reaction I had with Copaxone and tests showed that I did not have a heart attack. The only reason they wanted me to stay for further heart tests was because of my family history of heart disease.

When are doctors going to realize a person who lives with a chronic illness know their bodies better than anyone does? Most importantly, chronically
ill people know when they need medical help and are intelligent enough to seek
it when needed. If you are like me, the less I have to seek medical
attention, the better off I am.

Give me a break, do you honestly think I care I had to sign a piece a paper that I was leaving against medical advice because I did not want to stay for a freakin stress test the next morning. The way I saw it the hospital just wanted to get more money from my insurance for an overnight stay...I HATE STAYING IN A HOSPITAL. Did they really think I want to be poked and bothered every four hours when my vital signs were stabled, just to have a stress test the next morning? Hospitals recommending and insisting on unneccesary hospital stays is one of the problems with our health care system.

I experienced my third Immediate Post Injection Reaction after my Copaxone injection. Seconds after pulling the needle out of my thigh and grabbing the cotton ball to stop the blood that oozed from the injection site. A volcano erupted inside my body. It felt as if the medication exploded. I literally felt a burning rush travel up the top half of my body and slowly flow back down to the soles of my feet. My eyeballs rolled backed as my chest tighten with every rapid heartbeat. I was scared out of my mind, I could not breathe, thank God, my husband felt something was wrong and came upstairs to check on me.

As he dialed 911, I prayed for calmness and not to fear what was happening. I knew in my mind it was an IPIR experience and I held on to the belief no one ever died from one. The grip on my chest eased to the point I could breathe a little better. I thought my experience was about to be over until the severe itching and whelps start popping up over my body and a strange taste entered my mouth.

I start cursing living with MS and the medication that caused the hell I was living now. I could not understand why this was happening to me again. I thought IPIR’s were so rare that the odds of me having one again were slim to none. Well, the joke is on me. I was told that when I experienced my first one in 2007, yet I had another one months later in 2008.

On the transport to the emergency room, my tongue felt as if it was swelling and the itching made me want to peel my skin off. The EMT feverously injected an IV in my veins and shot me up with Benadryl. By the time I made it to the ER, I was drowsy and in a better state of mind. Hours later after an infusion of Solu Medrol, my body felt like its regular multiple sclerosis living self. The ER doctor asked how I felt and I told her the truth, she informed me that my test came back good and my vitals were stabled and I could go home after she consult with the ER doctor in charge.

I could have been knocked over by a feather when she came back in and said, "We want to keep you for further tests." "Why!", I asked. She said, "There are other test that they wanted me to take in the morning to check my heart." There was no need for me to stay to take further heart tests the next day, so I refused to stay. I explained to them, "I have a cardiologist and I have been given all required test because of my family history last year in May. You asked how I feel and I told you I feel much better than when I arrived, my vitals are stabled, and the heart enzyme blood work came back indicating all is well, therefore, there is no need for me to stay overnight for further heart testing in the morning."

I kid you not they were trying to put the fear of God in me. They went on and on about the chest pain I had with the IPIR and it was in my best interest to let them perform further testing because of family history. I was getting annoyed with their persistence about staying in the hospital. Why it is medical personnel do not really listen to patients who are in tune with their health situation and body is beyond me. Did they not hear me! When I said, “I recently had the tests they wanted to perform done by my own cardiologist and I will call him first thing Monday morning to follow up on why the wanted me to stay in the hospital.” The last place I wanted to be was in a hospital and my birthday was coming up Sunday, when I knew all was right with me again.

This may sound strange, but I was elated and confused knowing I was not going to die after having an IPIR. I was and still am confused on what to do about a disease-modifying drug to slow down the progression of my multiple sclerosis. Should I continue taking Copaxone? I know Copaxone is working for me because I have not had any new brain lesions and my exacerbations have been less lately during the years I have been taking Copaxone. Unfortunately, the IPIR reactions are worse each time I have one. I am obviously, in that rare percentile that experiences IPIR while taking Copaxone. It is a terrible experience and I do not like going through it, but who is to say I will not have worst experiences on my other three choices of a DMD. I thought about not taking anything at all, but after talking with my Dad. I promised him I would continue taking a DMD for my disease For now, I am going to take some time off from taking my daily injection until I make a decision on what I am going to do.

Anywho, all is well for now and I enjoyed my birthday with my family at home :) I will make a decision soon, but I am leaning towards staying on Copaxone because at least I know what it will do to me unlike the other DMD's.

Living With MS....MY WAY

I thought I was going to get myself together when I wrote “MS you can’t keep a good person down” and “Honey you are a Junkie” in June 2007. All I did was trade in the numerous prescription I was taking daily and as needed for a more dangerous and potent drug. My reflection was the best thing to happen to me in 2008.

I still live with pain, tingling, numbness, fatigue, nausea, dizziness, and insomnia. Hell, living with MS I never knew which ailment was going to afflict me, or when it was going to happen. I still do not know today because MS is a predator that I cannot control, but I can control how I allow it to affect my life.
Too many times, I allowed MS to put me in a depress state, for too long I taken drugs regularly to keep symptoms away. Allowing MS to dictate my mood and what I put in my body is what will cause my DEATH. The aforementioned is my reality of living with MS.

I realized if I could live through withdraw symptoms of Fentanyl, I can live with pain, tingling, numbness, fatigue, nausea, dizziness, and insomnia without popping a pill or capsule everyday to keep the symptoms away. I am no idiot; I will take medication, as I need it. I am proud of myself because I have been strong enough not reach for a pill or capsule when MS take me for a ride with one or more of my symptoms. I am proud of the fact I need to have new prescriptions written for the MS symptoms that plagues me when I go see me Neurologist February 17…yes, it has been that long since I taken what I call my as needed drugs.

I have come a long way, the only drugs, I take on a daily basis are my Copaxone injection and Cymbalta. I would not be taking Cymbalta if I had a severe case of anxiety recently. My anxiety is better and I contribute that to Cymbalta, therefore, I will continue taking my Cymbalta on a daily basis. I never want to experience the type of anxiety I just overcame in my life.

Living with MS my way may not work for others, but damn sure works for me.

MS + Copaxone = ANXIETY

I started experiencing attacks of anxiety before I went on a hiatus from blogging. In the beginning, I thought maybe, I was doing too much…blogging, school, accepting board appointments, and helping in the Mayor's campaign among my personal daily duties. By the way, my candidate WON :)

I awaken one morning from a night sleep and I immediately felt panicky and fearful. The feeling last a few minutes, but I was complex to why I was feeling that way. As I continued with my day, I noticed I was feeling panicky and fearful through out my day. I did not associate what I was feeling to ANXIETY, I just knew something was not right to feel something terrible was about to happen and it was out of character for me. I brushed it off as residual effects from wearing a morphine patch for a year and suddenly stopping a few months earlier.

Waking up feeling fear and panic went on for weeks and it intensified to the point, I knew I had to get to the bottom as to WHY. I did not like what it was doing to me, it was starting to affect my life to the point I was afraid of being home alone, driving, and leaving my home. I was at the point of despair hiding this creature ANXIETY that invaded my thoughts and body.

Many times, I thought I was going to lose control of taming the creature within when I was out in public, therefore, I cancelled appointments, stopped blogging, and if I were not taking online courses, I would have quit school. Realistically, I knew nothing was going to happen, but this creature was paralyzing me. I start realizing keeping quiet was giving the creature within power.

I began taking that power back when I told my husband what I was going through. Of course, his response was to make an appointment with my therapist. I agreed, but the creature had me paralyzed to the point I could not drive without feeling as if I was having a heart attack. I was ready to have myself committed to get control of the creature within. I called my therapist and told him how I was afraid to leave my house and drive because I physically felt as if I was going to die. I asked him, “If I checked myself in the hospital could he see me then because I cannot keep going like this”. Unfortunately I could not check my self in for severe Anxiety because I was not suicidal or a harm to others, which is fortunate.

My next course of action to fight the creature was a visit to my primary care doctor and neurologist. It is no secret there is a drug for all ailments that invade our body. Once again, I was semi scolded by my primary care doctor and neurologist for waiting weeks to let them know Anxiety was kicking my ass. My primary care doctor asked me, “Is anxiety a side effect of Copaxone.” I responded, “I don’t recall anxiety being a side effect of Copaxone, but I will look into it.” My neurologist confirmed anxiety is a side effect of Copaxone and anxiety is associated living with multiple sclerosis. I was prescribed Cymbalta 60mg to control my anxiety creature. Cymbalta was good for my neurological pain because I use to take it, but I did not know it was also to control anxiety. It took three weeks for Cymbalta to get in my system, tame the creature, and start gaining control of my life again. As of today, I have been taking Cymbalta for two months and I plan to continue taking it until a side effect rear its head from taking it.

So many different side effects come with taking medication. It is not as if I did not know, but I have to remember that a side effect from a drug can happen at any time while I am taking it. I promised myself, when I am out of character; I will not wait until it become critical before I notify my primary care doctor or neurologist. Do not be a hard head like me, when you feel out of character get in touch with your doctor.

Back On Track

Day two of having the Solu-Medrol infusion is over and tomorrow I can finally take the IV out of my hand. I am feeling so much better; I can move my head again and walk without the use of a cane. I am not going to lie, I am too vain to be walking around with a cane and I will do whatever it takes not to have to use it more than I have to. I am a realist and I know the day might come where I will have to use more frequently than I do know, but until then I am going to move around everyday I use of my legs. I was devastated when I had to stop wearing my three-inch heels. Hell, I catch grief from my doctors coming in with a one-inch heel. If you were, a shoe fanatic as if I am you would know how I feel. If I told you how many pairs of three inch heels I had to replace you would think I was nuts. Therefore, I will not reveal how many pair of shoes I own :)

This time around, the only problem I had with the Solu-Medrol was severe stomach cramping the first day. Today I was energize and I got a lot things accomplished around the house and caught up on reading chapters from my online History II class. My neurologist advised I go back on the Fentanyl patch. I discussed the emotional incident I had in May and I stopped in June thinking the emotional breakdown was from the Fentanyl patch. She had a point about the Fentanyl patch did keep my pain level in control because I was getting a daily dose of pain medication, I did not have daily tingles and numbness, and I did not have an exacerbations while I was wearing the Fentanyl patch. She also said that she is not comfortable with how many Lortab I have to take. With the kind of pain I suffer, I need daily 24/7 dosage of pain medicine going into my system.

I talked with a pharmacist and ask him if the Fentanyl could have been the cause of my emotional breakdown in May, he said Fentanyl does not cause that kind of reaction and that it could have been another medication I was taking. After that incident, I stopped taking all the medication. I do not plan to start my Fentanyl patch immediately because I am feeling fine from the Solu-Medrol. My plan is to take my Copaxone injection daily, and my Fentanyl patch. When it is time to put another Fentanyl patch on the third day I will skip a day or two then put another patch on.

I know my body better than anyone does and I believe this plan is best for me. My doctors want me to take an anti-depressant, but I am not willing to get back on an anti-depressant. The side effects of the anti-depressant have mental mood changes. Therefore, if it was not the Fentanyl that caused my emotional breakdown in May, it had to be the anti-depressant. If I feel, I need to go on an anti-depressant than I will make that decision when the time comes. The Fentanyl patch has dangerous side-effects, but you have to take the good with the bad and I am willing to take that chance again because it did work for me.

I Wish I Known Before This Happened

This has been a trying week, today marks the third week I have started back in giving myself Copaxone injections. I was told by the Shared Solution nurse to put my auto injector on number four instead of six when I am injecting my thighs and arms. Each time I had an IPIR it was when I injected my thighs and that is why the nurse suggested I put the dial on four.

It did not feel good injecting myself again after two months of being injection free. In the beginning, my injection site would swell and spread to the size of a quarter and leave a lump for days. I wanted to quit the injections, but I feel more secure of my disease progression slowed by taking Copaxone. I also know the worse that can happen to me while being on Copaxone. Hell, if my last IPIR did not kill me, I know I will not die if I get another one while being treated with Copaxone.

I noticed while being back on Copaxone how fatigue I was again. I did not have the energy to do much of nothing and I slept to the point I actually lost track of what day it was. That was the strangest feeling thinking it is Thursday, but it was actually Friday. I had better stop watching Twilight Zone because I felt I was in on when I literally lost track of my days.

When the above picture happened, I was mentally preparing myself to stop taking Copaxone again regardless of my belief that it was slowing the progression of my disease. The blue yarn marks how wide my injection site that night spread and every pore in that area was open where a pen tip could have fit into them. To make matters worse if you look closely I also had a hive form in that area.

I never experienced an injection reaction like that before and I began to think my body was rejecting Copaxone. I went in to see my neurologist Friday, two days after it happened, the area was slightly swollen, pores closed, hive gone, and I showed her the picture. She is reluctant to switch me on Betaseron or Rebif so soon after getting back on Copaxone and Tysabri is out of the question. She prescribed Provigil for my fatigue and a nurse will be coming out to give me another course on injecting myself. I really do not give two cents about a nurse coming to my home to give me injection training again. I want to know how I can make my injections tolerable.

A different Shared Solution nurse called me Friday evening to discuss my injection reaction and set up to inform me they will be sending out a nurse. He asked me what the dial of my auto injector was on when I inject myself and I told him four, he stated, “A four was not a good setting if my build was not large and he suggested I put it back on six.” He also stated, “In the past several years they found out that placing a warm compress on my injection site for five minutes before injection has made the injections tolerable with less reaction problems.”


The above could have been prevented had I known what the nurse told me Friday evening and I do not understand why I am the last to know a warm compress for five minutes before an injection would have made all the difference. My injection sites since Friday evening had been tolerable and the Provigil is doing its job with my fatigue. I am looking forward to a productive week Monday because I did not get squat done last week.

Keep On Moving

Sunday night I took a Tizanidine because I felt spasticity creeping in my legs. I felt the tightness and pain from my calves down to my ankles. I was grateful it waited until after my weekend ended before it started.

When I was given Tizanidine to take for spasticity, it was prescribed take one tablet every three hours. I did just that in the beginning, but I did not see the need to continue taking it once I was no longer experiencing spasticity in my body. Tizanidine was put in my take as needed category because it did the job after a day. Well, I was so lucky this time around, when I woke the next day, I did not feel the tightness and pain while I was lying in bed.

The minute I stood up and tried to walk my legs felt like concrete, every step was painful and my balance was shaky. I had no choice but to painfully make my way to the monstrous looking four-prong cane because I need assistance to keep from falling. I hated it when my doctor ordered me a four-prong cane and I was determined not to ever use it.

I thought to myself, “God, please don’t do this to me now after I had such a beautiful weekend and I have been feeling better since I have not been injecting myself with Copaxone”. It is funny how quick the mind thinks the worst and how easy it is to start feeling depressed when your way of life is threaten. I pushed the negative thoughts out of my mind and replaced them with positive ones. I put a plan of action together. First, I had to get rid of my vanity and accept the fact I need the help of my cane for now. I used my cane as I moved about my house and stayed off my legs as much as possible. Monday I completely rest in bed all day.

I decided not to pump myself with Tizanidine after taking it for a day and I refused to take Lortab 10mg to combat the breakthrough pain I was feeling from the spasticity. The morphine I have going into my body 24/7 is enough and I am trying to breakaway from taking Lortab whenever I have breakthrough pain. My goal is not to become heavily dependent on medication, I been there and done that. Since I have been on Duragesic patches, I noticed many of the daily symptoms I use to feel from MS are far between. I dwindled myself down from the many prescription drugs I am prescribed and my goal is to continue the Duragesic patch and a treatment to slow the progression of MS...Tysabri. I prefer to keep the other prescribed drugs as needed and my hope is I will not need them often.

My legs are feeling better and I do not need the aid of my cane, I credit rest, not allowing myself to become depress over my concrete legs, and accepting the reality my life is subject to change. For now I can keep on moving! I realize it is how I approach the changes when they occur because for now the changes are temporary when they happen. If a permanent change eventually happen I will deal with it when the time come.

My Goodbye Letter From Copaxone

April 18, 2008

Dear D:

Thank you for taking the time to talk to us the other day about your experience with COPAXONE (glatiramer acetate injection). We're sorry to hear that you are no longer continuing with your daily injections. We know there can be many concerns and issues for maintaining therapy, and sometimes these concerns may seem to outweigh the benefits of therapy.

Although you are no longer on COPAXONE, you are still eligible to receive Shared Solutions program offerings that are not specifically designed to support COPAXONE use. We will make sure you continue to receive these materials. We wish you well in managing your multiple sclerosis and encourage you to utilize the support of your local chapter of the National Multiple Sclerosis Society. If you and your doctor decide at any time that you should resume COPAXONE, please contact Shared Solutions so we can provide you with materials and support to help you maintain therapy. Take care and good luck.

COPAXONE is indicated for the reduction of relapses in relapsing-remitting multiple sclerosis.

The most common side effects of COPAXONE are redness, pain swelling, itching, or a luomp at the site of injection, flushing, chest pain, weakness, infection, pain, nausea, joint pain, anxiety, and muscle stiffness. Thesee reactions are usually mild and seldom require professional treatment. Be sure to tell your doctor about any side effects.

Some patients report a short-term reaction right after injecting COPAXONE. this reaction can involve flushing (feeling of warmth and/or redness), chest tightness or pain with heart palpitations, anxiety, and trouble breathing. These symptoms generally appear within minutes of an injection, last about 15 minutes, and go away by themselves without further problems.

Warm regards,

The Shared Solutions Team


The Shared Solutions team and Copaxone have been great to me over the years. I experience all the common site effects except (infections), I was becoming tired of the common side effects, but I knew I had to suffer the bad to benefit from the good, which was slowing the progression of my multiple sclerosis. Like a trooper, I suck it up and injected myself daily.

It was hard to deal with the common side effects over the years, but I DID IT. What gets me is how the Shared Solutions Team nonchalantly referenced what some people experience besides the common side effects. As someone who just experience it a second time Shared Solutions need to freaking stop referencing an IPIR experience nonchalantly.

Speaking for myself, it is one thing to get use to the common side effects, but they are out of their freaking minds if they expect ME to get use to the "what some people experience". They also fail to mention when in what some people experience is your body could break out in hives. Maybe enough people has not experience a break out of hives when going through an IPIR experience that last longer than a freaking fifteen minutes to mention it.

I thank the Shared Solutions Team for offering their continue support, but I DECLINE to continue my association with you.

I NEVER WANT TO SEE ANOTHER VIAL OF COPAXONE IN MY LIFE! I been there and done that and I do not believe in backtracking. Copaxone has done all it could do for me and it is time to move on. I done nothing but think about what treatment I will or will not take to continue slowing the progression of my multiple sclerosis since the night I knew I could no longer take Copaxone.

My reality is the treatments that are available for me to take all have common side effects and "what some people may experience" problems. Unfortunately, for me I experience common side effects and "what some people may experience" on every medication I take. It’s just a matter of WHEN it will happen to me. I will worry myself to death wondering when I will experience the worst of what can happen being on a medication.

I have decided to try Tysabri, because I believe Avonex and Copaxone worked in slowing the progression of MY multiple sclerosis. I have my days with mobility, but I am not permanently immobile, I have my days everyday with pain, but I am on a regiment for pain that works for me that I am still functional, I have been fortunate not to wake up and not being able to see, I have been fortunate not to have lost my voice. Although there are other problems we MS'ers experience, the ones I referenced above are the ones I feel blessed I am not having permanent problems with and I can continue to enjoy living life how I know it.

When I was diagnosis, I FEARED loosing my mobility, sight, and voice. I know it could still be a reality, but I had to conquer that daily worry of fearing what I feared the most living with MS. Second Timothy 1:7 and Psalms 23 help me when I FEAR something. Those biblical verses are the same verses that will help me conquer what I fear about Tysabri. By the time I start my first Tysabri infusion I will have a peace of mind of what I fear the most selecting Tysabri as my next therapy to slow the progression of MS. Taking RISKS are part of LIFE; we all have done at least once in our lifetime. Okay, I have done it more than once :) I am going into this new treatment well aware of my risk.

I admit, but now I release that I feared I could be that small percentage of people who contract PML while on Tysabri as a treatment.






I am witness that...









"God has not given us a spirit of fear, but of power and of love and of a sound mind".

"The Lord is my shepherd;
I shall not want.

He makes me to lie down in green pastures;
He leads me beside the still waters.
He restores my soul;
He leads me in the paths of righteousness
For His name's sake

Yea, though I walk through the valley of the shadow of death,
I will fear no evil;
For You are with me;
Your rod and Your staff, they comfort me.

You prepare a tale before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.
Surely, goodness and mercy shall follow me
All the days of my life;
And I will dwell in the house of the Lord
FOREVER".

As of this moment I am letting go of my fear of Progressive multifocal leukoencephalopathy (PML)

Stop The Pressuring

My mind is made up! I do not want to start another treatment to slow the progression of multiple sclerosis right now. Give me a break, I was the one who felt like I was dying when Copaxone crushed my chest, took my breath away, and blotted my body with hives that itch I was living in an ant hole.

Doctor “"D", you need to get started on another treatment right away."

Me “I do not want to start another treatment right now, I need a break from injecting myself, and I do not feel my body can handle starting a new treatment right now."

Husband “Have you ever known me lost for words"

Me “No"

Husband "For the first time in my life I was lost for words, seeing you holding your chest and trying to breathe. It hurt me to see you like that and I could not do anything for you. I was scared of the thought of being without you."

Me "I did notice something different about you when I was in crisis, I was glad you were home because when you are near I feel safe whenever I am feeling bad. I am sorry I scared you, but I decided not to take another treatment to slow the progression of my MS."

Husband "You can't do that, at least we know Copaxone has been working. You have not had any new lesions since you have been taking it. What about me? Okay, I can understand why you feel that way, but take a few days to think about this some more."

Nurse calling for the doctor again Tuesday, Doctor, "D, have you decided what you are going to do, you really need to start a new treatment right away. You have been doing so well and I do not want you not be on a treatment. You have been on Copaxone for about five years and it did prove to work when you were on it. That is the purpose of being on a treatment to slow the progression of the disease."

Me "Dr. "P", I do not want to start another treatment right now; I am shell shock over what happened last week. I can tell you this, I definitely do not want to take the treatments that require me injecting myself, therefore, the only choice I have is Tysabri. When I am ready again, I will take Tysabri".

Doctor "Good, come into my office this week so we can start the process."

Me "I have an appointment already for May 2; we can do all that then."

Doctor “We should not wait until then because we have to ask you a series of question to start Tysabri (I wonder what that is about) and file insurance papers. Approval can take up to five weeks if we wait until your May appoint, it would be around June before you can have your first infusion."

Me “I have no problem with that."

She was soo insistent, I gave in and my appointment is this morning. I do not like the feeling of being pressured and that is how I feel right now. I know my doctor means well, but she did pressure me into this appointment. I am going with how I feel and I will not be making that appointment this morning. I will see her on my original scheduled appointment...this is my life not hers.


At least my husband is no longer pressuring me; he is willing to accept whatever decision I make. He has been helpful with a suggestion that I am thinking about trying before starting a new treatment.

No! No! No! To Copaxone

Like the Amy Winehouse song..."No No No to Rehab", I am singing "No No No to Copaxone." It happen again last night, this time it forced me to the emergency room. Immediately after my injection my heart and chest felt tighten to the point I could not breath and became dizzy. I start itching like a heroin addict looking for a fix and my body broke out into hives. As much as I hate calling 911 for an ambulance to rush me to the hospital, last night was no time to be hating.

By the time they arrived, I was still struggling for air, itching like mad, and my blood pressure was off the charts. The EMT's were great they hooked me to some oxygen, put the IV in with one stick, shot me with some benadryl and rushed me to the hospital. I felt that I was dying...I obviously survived because I would not be writing this post.

After hours in the ER hooked to the machines while oxygen flowed through my nose and a shot of Medrol I pulled through. I do not care how rare this reaction one can have being on Copaxone is, I am through with Copaxone. I trusted my doctor the first time I had an IPIR reaction and she said, "Its so rare and random you will probably not experience it again. Copaxone is working so well for you I do not think you should stop taking it". Hell, the second time came less than six months from the first time and it was worse.

Fool me once shame on you, fool me twice shame on me...No! No! No! to Copaxone

It is time for me to do research on the other disease modifying drugs except Avonex (been there done that). I have a feeling when I talk to her later today and she have me come in she will suggest Tysabri. Personally, I am not feeling Tysabri and I do not know enough about Rebif and Betaseron. I do know I want to continue to slow the progression of multiple sclerosis, so I have no choice put to select another disease-modifying drug.

I get so frustrated with MS and its unpredictability; I damn sure did not think my evening would end with an ER visit. I had romantic plans after receiving some unexpected roses and a beautiful card from my better half. Well, all is good now...if any of you have insight on Tysabri, Rebif, or Betaseron enlighten me. I still plan to research the drug, but it would be nice to know how it has been for any of you who are taking one of the three I have to choose from.

UPDATE

I was too chicken sh*t to try Tysabri and I did not want to go through the motion of taking Rebif or Betaseron. Therefore, I went back on Copaxone in May 2008. Hopefully, I will not have another IPIR.

Right Ass Out From This Point On

I thought it would get easier as the years passed, but it does not. Everyday I prepare myself mentally when it is time to take my Copaxone injection. I tell myself "This is the day; I will not take minutes to press the auto injector button to release the glatiramer acetate into my body." I am still waiting on that day.

I wish I did not have to take an injection everyday. I wish researchers discover a multiple sclerosis drug to slow the progression of MS that does not involve injections or infusion. I wish I did not have Multiple Sclerosis, I wish, I wish, I wish so many things when it comes to living with MS.

My injection site choices are my arms, thighs, stomach, and ass. I know I should probably say buttocks, but eff that I am pissed. My stomach is the best place to inject myself, I have not experience a bad experience there (knock on wood). When I inject my arms, thighs, and ass the pain is more noticeable, injection sites are more noticeable, finally the worst part of it all in those areas I have experienced IPIR and nerve reactions.

I talked about one of my IPIR reactions, but I never talked about my nerve reactions until this post. Immediately when I removed the needle from my right buttock, the nerves on my entire right side went haywire. My body went limp and I dropped thank God I was in my bedroom and fell on my bed instead of the floor. All I could do was cry from the excruciating burning pain that was traveling a nerve path. I cursed having MS at that moment. The severe burning pain is gone, but I am left with nagging pain in that nerve. Morphine is not keeping this nagging pain away. I am reduced to taking Lortab 10mg for this breakthrough nerve pain because I dared to inject my right ass to give the other parts of my body a break.

I should have known better because this happened about a year ago when I injected in that area. I thought since it has been awhile, it would be okay to inject there again. I freaking found out the hard way how wrong I was. Come to find out from my primary care doctor I can no longer have ANY injections in that area because the nerve is damaged.

What a life, MS is like a box of chocolates...day to day I never know what to expect from MS. I do know this for sure...My right ass is off limits to needles.

What Should I Do

IPIR happened again tonight the only difference is that it lasted for two minutes. It is times like this when I just do not know what to do.

I have an appointment with my neurologist next Tuesday, but I know I have to call and tell her about my experience tomorrow. It may be time for me to stop injecting myself daily with Copaxone. If that is the case, I am not sure what form of therapy I will try to slow the progression of MS. I know I cannot take Avonex because of the severe side effect I experienced from drug. I never tried any of the others, but I do not know if I want to.

What should I do? For now, I am not going to worry and I will wait and see what my options are.

Take As Needed

There is nothing I can do when multiple sclerosis rob me of some of my cognitive. I can take Provigil to battle ms fatigue invade my body with a wave of extreme fatigue. I can also take a milder anti-depressant as I have in the past to fight ms depression.

Finally, there is the Solu-Medrol infusion that works when my ms symptoms cause my body to break down like Humpty Dumpty.



After my Solu-Medrol infusion Saturday, I felt great my body no longer felt like Humpty Dumpty. During my office visit Friday, my neurologist gave me her reason why she thought it would be a good idea for me to take Lexapro and Tizanidine daily. I explained to her why I did not want to take Lexapro and why I take Tizanidine on an as need basis. I finally gave in and told her I will start taking Lexapro once a day and Tizanidine twice a day starting Saturday January 05.

My living hell began Monday morning, mentally I felt as if I was going out of my mind and physically I could not get out of bed. I took back control of my life Wednesday. I do not try to play doctor on myself, but no one knows my body as I do. I called my neurologist and informed her on how I was feeling and as of today I will not be taking Lexapro anymore and I will only take Tizanidine, as I needed it.

It did not make sense to me to take pills that had me totally incapacitated mentally and physically. I went from living life to having no life and that is not me. I was not going to continue to take prescription medication that altered my mental state and robbed me of physically getting around no matter what my doctor thought. Life has been fine for me wearing a Fentanyl patch, taking Lortab as needed for break through pain, and injecting myself daily with Copaxone. Mentally, I am coherent and physically I could get around taking what I call my fabulous three. I also knew if I had any other symptoms that arise from multiple sclerosis I have an arsenal of medication as needed because at one point I was taking more pills than I can count on a daily basis because I was told to do so.

Because I was told by my doctors to take certain prescribed medications I almost lost my life twice. I am damn if I do and damn if I don't. I rather be damn if I don't from this point on.

Side Effects

I honestly believe my death will be because of a side effect from one of my medications I take for multiple sclerosis. I use to believe side effects from medication would happen within three days of taking a new medication. My realities of that belief was diminished when methotrexate went toxic on me in June 2006.

Another reality of side effects hit home last night when I had a reaction after injecting Copaxone. Immediately after my injection my chest felt as if it was being crushed and I couldn’t catch my breath. I felt as if I was about to die from a massive heart attack. Thankfully, that crushing feeling start subsiding after five minutes, but the shortness of breath lingered on for another five minute. Of course my husband wanted to call 911, but I assured him I was going to be fine. To be honest I was worried about what happened and I couldn’t wait until the next morning to call my neurologist to find out what happened.

I was anxious to know what happen and I couldn’t wait any longer to hear back from my neurologist, so I called the Copaxone Shared Solution hotline. After explaining my symptoms to the nurse she advised me not to take the shot tonight until after I hear from my neurologist to see what she want me to do. The nurse from Copaxone told me I had a rare side effect from Copaxone that is called Immediate Post Injection Reaction and from studies of Copaxone it happened to about 10% of the people in there clinical trials, but it is not and should not be fatal. Hmm, that is easy for them to say, but it is not comforting if you experience it.

Well, my neurologist seem to think the same because she advised that I take my shot tonight because that reaction is so rare and random that it may not ever happen again. Once again that’s easy for her to say, but not comforting to me. Since this was the first time I experienced an IPIR, I will take my injection tonight with reservations. If I experience IPIR again, I might rethink my decision to take Copaxone. The only reason I decided to continue using Copaxone is because my MRI’s have been stabled for the last several years of having no new brain lesions. So for now I have to suck it up and be a big girl and take that dang shot tonight.

Morphine and MS

The patch starts at 25mcg and of course that is what I was started on. It was too much for my body to handle after three weeks of continuous morphine going into by body. I talked about how good I felt on the morphine patch and how it turned on me. Well, I am happy to annouce the patch comes in a lower dose of 12mcg…it just came on the market. My pharmacist told me when I inquired if I can cut the 25mcg patch in half. The lower dose patch was so new neurologists and doctors did not know the morphine patch came in a lower dosage. I called my Neurologist and informed her about the lower dosage and we decided to see if having a lower dose patch would work for me.

On September 27 it will be one month I have been wearing a 12mcg Fentanyl/Duragesic patch. I have not been feeling the daily nerve tingles through out my body and my pain is about non existent. I only had to take Lortab 10mg every now and then for break thru pain. I am able to function more now that I do not have to take the numerous pills I had to take prior to wearing the patch.

I know what is working for me may not work for others, but that is why I blog and talk to others about what works for me because what is working for me might just work for you. My goal was to not take so much medicine on a daily basis and for the last month wearing the lowest micro gram of morphine has helped me reach that goal. I now only wear the patch take my Copaxone injection daily and take one or two Lortabs a week. That is a far cry from taking 10 different prescriptions on a daily basis.

The only problem I have now is getting use to taking the injections again after stopping for thirty days when I considered taking Tysabri. I am not going to lie… it still hurts like hell every time I push that needle, but Copaxone is working and I have to do what I have to do.

I Am Saying No To Tysabri

I have been contemplated on trying the multiple sclerosis therapy Tysabri. I actually convinced myself I was going to have my first Tysabri infusion in September. While I was in the MRI machine August 22, I thought about how miserable I felt with the severe nausea and vomiting I've been experiencing from trying a new drug. I was also frustrated when the MRI technicians couldn’t get the IV in my veins to shoot the dye in my system for the second part of my MRI test. That was a first, they had to call a phlebotomist to insert the IV and she had trouble. My motto is if you do not get it on the second try leave me the hell alone.

My veins are gone in my arms, the surviving very small vein in my right arm is hiding and running when a needle approaches it now. The veins in my hands had start running and the ones that didn’t run when I had to have an IV inserted became inflamed to the point were I can not be stuck there again. Call me a coward, but I am not ready to have an IV needle inserted in my chest wall to receive a Tysabri infusion on a monthly basis. I am also not ready to risk possibly contracting PML and suffer the side effects that come with taking Tysabri.



Today I am saying hello to Copaxone again. My MRI’s shows stability in the scarring of my T1 and T2 area. That tells me Copaxone has been slowing the progressing of brain lesions for me. I have been taking daily shots of Copaxone for years and had become accustom to the pain and the sometime injection site reaction after taking a shot. Although some days are worse than others I prefer to stick to a MS therapy treatment that I know is working for me. My stomach, arms, thighs, and hips have enjoyed not being stuck everyday for the last thirty days, but a girl has to do what girl has to do.

Here I Go Again...

Until Montel Williams,advocate organizations and average citizens continue to help support the passage of bill H.R 1717 (Truth and Trials Act) passed and help get Tennessee twin medicinal marijuana bills H.B.0486and S.B. 0641 passed. I and many others have no choice but to continue to take man made prescription pain medication with unbearable side effects that can be potentially deadly to get relief from the severe pain while living with a chronic illness with no cure.

I thought the Duragesic morphine patch was my answer to be rid of the pain and nerve tingles. I told you what happened while wearing the patch. Today I am to start taking Kadian 20mg which is a morphine capsule. My doctor logic is the patch was dispensing morphine in my body 24/7 and it became too much for my body to handle. By taking the morphine capsule I can skip a day or two between dosages to keep the severe pain away.

I am not looking forward to ingesting morphine again, but I will if my pain return to this point in my life again. For the moment I believe I still have enough morphine in my system where I can control the intensity of the pain with Lortab. I am hoping once I start the Tsyabri infusion in September, there would be no need for me to take morphine. I am hearing good things about Tsyabri; I hope it works for me. If it don’t I guess I will be back to injecting myself with Copaxoneeveryday to slow the progression of lesions in my brain that is slowing destroying my central nervous system.

I Do Not Miss You

Since I have decided to try Tysabri I have to stop injecting myself with Copaxonefor 30 days before I can start the Tysabri infusion.

It feels DAMN good not give myself a shot everyday.


I Know A Change Is Going To Come
For Me Living With Multiple Sclerosis...