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.

They Don't Have To Worry Anymore

My husband was not the only person in my family strongly against my decision to take Tysabri as my new treatment to slow the progression of multiple sclerosis, my entire family was against it. They should all be very happy campers when I tell them I will not be taking Tysabri. The decision to take Tysabri as my new treatment was taken away from me after my third doctor visit of the month of May.

Since I had taken methotrexate (chemo) as a treatment for my MS, my white blood cells have not returned to normal. Methotrexate also went toxic in my body after being on it for six months. At my doctor appointment Tuesday, I received the results of the Complete Blood Count; my CBC count revealed that my white blood cells are still low. They are higher than what they were when I was taken off methotrexate, but they are too low to take Tysabri. To the point, without adequate protection from these disease-fighting cells, viruses and bacteria suddenly become much more serious threats.

Although I have been feeling better since I had my last experience, that feeling is slowly disappearing. I am trying very hard not to get down about my present circumstances. The adversary is busy, I am feeling alone and I know I am not alone…I have to and I will fight what this is I am feeling right now…there is no need to worry TM… I will pull myself out of this rut soon.

Emotionally I have prepared myself to take Tysabri well aware of the possible danger. I am aware of the chemotherapy drugs that some MS’ers can take, but I been down that road and I cannot travel it again. I have to prepare myself mentally that I will be injecting myself with a needle again. I am experiencing an emotional rollercoaster that is leaning towards a tunnel of depression. I am not in that tunnel yet, but I feel myself drifting there…tick tock, tick tock, a tick a tick a tick a clock :(

F@CK THAT!

My second appointment from my numerous appointments during the first week of May was to my neurologist. I went in to start the process to take Tysabri as my new treatment to slow the progression of multiple sclerosis. I must admit, I was becoming apprehensive again after reading the paper work I had to sign. I did not feel too comfortable knowing I had to enroll in a special program called the TOUCH Prescribing Program and the company will collect information about my health at regular periods.

I continued the process because at this point I did not care because all I cared about at the time was not being injected with a needle everyday. I knew the risk of taking Tysabri and I explained it to my husband. I thought he understood the risk I was taking when I told him I was going to choose Tysabri as my next treatment. He finally read the Tysabri Patient Medication Guide I brought home from my appointment early this morning and after reading the following:

> TYSABRI increases your chance of getting a rare brain infection that causes death or severe disability. This infection is called progressive multifocal leukoencephalopathy (PML). PML usually happens in people with weakened immune systems.

> No one can predict who will get PML.

> There is no known treatment, prevention, or cure for PML.

> Your chance of getting PML may be higher if you are also being treated with other medicines that can weaken your immune system, including other MS treatments.

> Even if you use TYSABRI alone to treat your MS, it is not known if your chance of getting PML will be lower. It is also no known if treatment for a long period of time with TYSABRI can increase your chance of getting PML.

> TYSABRI is available only through a restricted distribution program called the TOUCH Prescribing Program. In order to receive TYSABRI, you must talk to your doctor and understand the benefits and risk of TYSABRI and agree to all of the instructions in the TOUCH Prescribing Program.

> If you take Tysabri, it is important that you call your doctor right away if you get any new or worsening medical problems (such as a new or sudden change in your thinking, eyesight, balance, or strength or other problems) that have lasted over several days. Tell all of your doctors that you are getting treatment with Tysabri.

Also, see "What are the possible side effects with TYSABRI?" for other serious side effects with TYSABRI.

My husband immediate response was, "F@CK THAT! I am NOT with this...This should not be on the market from what I just read. You would be nothing but a guinea pig and I am not with this."

I replied, "I thought you understood me taking TYSABRI would be risky because I DID NOT want to inject myself anymore and TYSABRI was a once a month infusion."

Husband, "I am still not with this and you are not living alone with MS. I am living with it everyday too. I don't want you taking this, is there something else."

Me, "There are two other treatments I can take, but they are injections and I am shell shock over taking injections".

Husband, "Well...I told you how I feel."

I am not alone living with MS and I must consider how my husband feels about the treatments I take to slow the progression of MS. If I continue the process to take TYSABRI and go for my first infusion I would be putting unnecessary stress on my husband. I did put my fear away about TYSABRI, but TYSABRI is not worth taking if it will worry my husband the entire time I am on it. My love, respect, and devotion to my husband is more important to me than to take a treatment that is riskier than the other two treatments available. If I was able to get over the fear of PML, I can get over my fear of injecting myself again. I will be calling my neurologist Monday to stop the insurance process for TYSABRI and let her decide which injectable treatment she recommend I take between Betaseron and Rebif.

***UPDATE***

After writing this post saying, I will call my doctor Monday to stop the procedure for insurance approval. I decided not to do that because I have come to terms with finding out how Tysabri works for me. If I personally do not think, it is for me after four infusions I plan to discontinue Tysabri as my DMD. I respect my husband opinion, but every medication we put into our body have some sort of side effects. None of us knows what the future holds.

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.

Tysabri Q & A by Lauren P.

Lauren
is the first person with Multiple Sclerosis that visit and commented on my blog. Lauren is an inspiration to me. She has been living with MS longer than I have and to watch her video being self efficient calmed my fear when or if MS force me into a wheelchair.

Today Lauren is an advocate for Tysabri and through her, I keep up with how Tysabri is working for her and others for the day I decide to use Tysabri. Yes, I am a coward when it comes to Tysabri. I am still afraid of taking Tysabri because of the risk of PML and how it came on the market. After visiting her site today and watching (another young woman by the same name Lauren) she has inspired, who is taking Tysabri, I decided to start weekly YouTube post from people living with MS.


Q & A Part 1
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Q & A Part 2
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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...