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.

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.

He Is One Reason Why I Fight MS

The other day is not the first time I had a horrific experience with medication I have taken to slow the progression of multiple sclerosis and I am sure it will not be the last. To see my grandson smile make me want to fight to be around as long as I can for him and my family.

There comes a time when I and I alone must make difficult decisions about my healthcare. Only people who live with this unpredictable illness can no what I am going through. Living with multiple sclerosis is not a cakewalk and it is a daily struggle to stay positive and navigate your life living with MS. I am not going to lie, it is a daily fight for me, but I am thankful that I have an inner strength that picks me back up to fight and not give in to MS.


My neurologist decided I should start Betaseron as soon as possible to slow the progression of MS. I understand as a doctor why she wants me to immediately continue a treatment. At the end of the day the decision has to be mine, therefore, I told my doctor, “After my terrifying experience the other day, I do not want to take anything right now. Yes, I know MS can cause serious problems if left untreated, but I have had serious problems treating it, so what is the difference".

I have decided to go without treatment to slow the progression of multiple sclerosis for now. I AM NOT QUITTING MY FIGHT WITH MS; I need to do this for me right now. In my heart, I know that my body cannot take another terrifying episode while on treatment.

There are risks in all of the DMD's available to slow the progression of MS. I plan to go without treatment until my MRI starts showing new activity of brain lesions or if I start having too many exacerbations. I hope that I can go a long while before any new changes. When the time come for me to go back on a treatment, I believe I will try Tysabri because it is a once a month infusion instead of weekly injections. I have had all I can take from injections.

Farewell Copaxone you have been kind to me; for the last several years you did stabilized my brain lesions, but my body can no longer tolerate you.

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.