Sunday, May 4, 2008

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.

8 comments:

Anonymous said...

My wife is not happy I am on Tysabri (7 now!), but I feel the benefits far outweigh the risks. She however is not openly hostile to it. 26,000 people are now taking it without another case of PML. Ask your hubby to research it further. I feel the real risk is minimal, which is why I am on it (and doing well).

Blinders Off said...

Anon:

I understand my husband hostility towards Tysabri, I felt the same way when I first read the risk in black and white. Hopefully, one day he will understand why I am willing to take this risk.

mdmhvonpa said...

Nothing is safe, and everything has risks ... just leaving the house is dangerous! You have to weigh the decision with what you want out of life, and that includes the hubby.

Anne said...

Since I don't advocate one drug over another, perhaps when you and your husband (if he chooses to accompany you on infusion day) meet other people who have been on the drug for some time, he may have a change of heart.

It is a very hard place to be in when you are trying to do something for you and trying to honor a mate's wishes.

My husband doesn't always agree with my choices medically, but he does say we will never know unless we try.

Glad your teeth feel better w/ the Sensodyne!

My prayers are with you and your husband as you start your new journey.

Jaime said...

Hi,
I stumbled across your blog this morning and I'm glad I did. Has your neuro talked to you about any other options? If you are not responding or unable to take the injections, Tysabri is not your only option. Personally I take Novantrone and it has saved my life. It gave me my life back. Sure, there are risks with that too, but they are not PML and they monitor you (echos, bloodwork).

Novantrone is a chemo drug that is done once every 3 months. You can have up to 12 doses in your life (which is 3 years) and most people get their lives back while on it. From what I have been told, most people also continue to do well for about a year after stopping it. Chemo may sound scary, but it really does help (or at least it has for me and the few other people I know who were on it). I am sure there are people out there that did not do as well on it, as we are all different, but I wanted to let you know there are other options. Also, there are two more chemo drugs that are available, Cytoxan and soon Rituxan.

Also, I attended a talk last week from a MS Specialist who stated there are 75 MS drugs in (human)trials right now and that soon there will be an oral med for MS. Probably in the next couple of years. I hope that this helps you. If you have any questions, please feel free contact me. You can get me through my blog.

There are other options so don't feel as if you have to do something that does not make you feel comfortable. Of course, if that ends of being the best choice for you, then I wish you the best!

Take care.
Jaime

Blinders Off said...

MdPa:

You are so right everything has a RISK and that is what so frustrating about LIFE.

I have faith everything will work out for the best it always does.

Blinders Off said...

Anne:

This is the first time my better half had such a strong reaction, no I take that back this is the second time. The first time was when I wanted to continue to take chemotherapy after it went toxic on me. I respected his wishes on not going back on chemo.

Oh, yes my teeth are doing so much better on Synsodyne...I love it!

Thanks for putting me in your prayers.

Blinders Off said...

Jaime:

I tried chemotherapy for a treatment and I loved it, but out of nowhere, I had a toxic reaction to it after being on it for six months.

I am on my way to your blog. I am glad you stumbled across my blog to, but I believe you were guided to my blog :)

I have been hearing about other MS treatments that are in oral form. Just recently, I heard about a neuro who is treating his MS patients with Zocor.

I need to and I want to get back on a treatment soon. I am sure I will be guided in the right direction sooner than later.