This week I am going to talk about Copaxone and my experiences with it.  Copaxone is given in shot form that you take every day.  It goes just under the skin.  It is composed a amino acids that may act as a decoy so that your body will attack the drug and not your nervous system.  This drug has been around since about 1996 and seen as a safe drug. Here are a list of possible side effects from the drug:

• pain, redness, swelling, itching, or lump in the place where you injected glatiramer
• weakness
• flushing
• depression
• abnormal dreams
• pain in the back, neck, or any other part of the body
• severe headache
• loss of appetite
• diarrhea
• nausea
• vomiting
• weight gain
• swelling of the hands, feet, ankles, or lower legs
• purple patches on skin
• joint pain
• confusion
• nervousness
• crossed eyes
• difficulty speaking
• shaking hands that you cannot control
• sweating
• ear pain
• painful or changed menstrual periods
• vaginal itching and discharge
• urgent need to urinate or defecate
• tightness in muscles
• white patches in the mouth

I personally have never seen this many possible side effects.   I can tell you when I took it I remember the injection site being red and swollen and that is all the side effects I had.  I hated these shots for a number of reasons but the many one is that I hated to give myself a shot everyday.  I hate giving shots to myself.  I would sit there for hours trying to talk myself into doing it.  It would finally get to the point where someone else would have to do it for me.  This drug didn’t do anything for me at all.  I felt like I did when I wasn’t on anything.  I know for some people they love this drug but for me personally it did nothing.

That is all I really have to say about the drug.  Please don’t base your decisions on which treatment to use sully on my experiences with the drug.  Before I do any treatment I always do research on it and see what people who are on it say about it.  I hope everyone has a great Thanksgiving.  As always I am looking for ideas to write about so if you have something you would like to see please leave me a comment and I will write about it!
Sources
http://en.wikipedia.org/wiki/Glatiramer_acetate
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000225

This week for MS Tuesdays I am going to write about my latest infusion and the new side effects that I had with this one.  I have always gotten a headache and sometimes I would have a reaction that felt like I was burning up from the inside out.  Well this time I had a whole new set of side effects that I wasn’t prepared for.  I had in on a Thursday because I couldn’t take Friday off and now that I look back at it and this turned out to be a good thing.  Anyways, I  woke up Friday and i was a little stiff but that is pretty much how it goes when I don’t take my muscle relaxer before I go to bed.  I didn’t think anything of it because it does happen and usually wears off after a few hours.  By the time I got to work I was in so much pain I wanted to cry.  I ended up calling my doctor and getting pain pills called  in but I decided that I would rather have a headache all weekend then the amount of pain I am in right now.  I have learned to handle headaches but I can’t deal with this pain especially since it is super hard to get pain pills out of my doctor.  She treats me like I am a drug addict and it is getting on my last nerve but that is another post for another day.  So I have the pain and when I was looking at the other side effects a lot of things made a whole bunch of sense to me.  Here are the side effects that go along with the drug:

When I looked at this list I realized that the UTI I had was because of the drug and the fact that my glands always swell up and hurt me was because of it.  I am amazed that this drug that is helping my MS is always making me sick.  It makes no sense to me.  I know I don’t want to stop taking the drug but I also know that I can’t keep dealing with all of the side effects.  All the ones in pink are the ones that I have had while I have been taking this drug.  After looking at the list and things that I have it is time to go back to the doctor and maybe go on a different medication. 

The big thing I want to say today is don’t let doctors bully you into staying on something that makes you sicker than the MS makes you.  You need to take your health into your own hands and do what makes you feel better!

I am going to do a small over view of different MS medications out there and then  for the next couple of weeks I will go into more detail about each of them.  I want to start by saying that there is no cure of MS right now.   There are a few medications that will hopefully slow the progression on the disease.  The first group of drugs are called Immune modulating drugs. They work by keeping the immune cells from interacting with other cells.  This group consists of 3 different drugs they are called Betaseron, Rebif, and Avonex.  There is one other drug that is under this type of medication and it is Copaxone.  This one is made of amino acids and works differently than the interferon’s.

There is Tysabri that attaches itself to the blood brain barrier and doesn’t let immune cells into the brain.  There are several other treatments such as: Novantrone, Cytoxan, Imuran, Rheumatrex, and Trexall.  All of those treatments are drugs that will suppress the immune system.

They will sometimes give a person steroids if the are having an MS flair up or relapse.  I have been given steroids several times and I will always refuse them now.  I don’t think they really didn’t anything but make me gain weight and make my eyes see funny colors.  I can see why they do them but I would rather have some disability than deal with the side effects of the drugs.

I have taken several of these drugs and I will post about how I reacted to each of them that I have taken when I explain them in more detail. As always if you have any questions please let me know!

This is the site I got today’s information from:
http://www.emedicinehealth.com/understanding_multiple_sclerosis_medications/page6_em.htm#inter

This week I am going to write about about Gilenya which is the first pill that you can take for MS.  This is super exciting because up and til now the only treatments were shots or an infusion.  This is a pill that you take once a day.  I have been looking for information on the drug but it is hard because it is so new that there isn’t tons for information out there yet.  I did find on WebMd the following information:
Gilenya can have severe toxicity. In clinical trials, side effects linked to Gilenya included:

• Elevated liver enzymes
• Macular edema (swelling of the central portion of the retina, causing distorted vision)
• Elevated blood pressure
• Shortness of breath
• Bronchitis
• Diarrhea
• Bradycardia (slowing of the heartbeat, seen only upon first treatment. The FDA panel recommended that patients be required to receive their first dose under medical supervision).

I can’t really say that this is any worse side effects than the drug I am on.  All the new treatments are going to have scary side effect that go along with them.  I also found that two people had fatal herpes infections.  They were being treated at 2.5 times the dosage that FDA approved though. 

 Here are a few other sites that have information on them if you are interested.  I hope this was helpful!
http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1309
http://www.drugs.com/gilenya.html

I was going to post about MS treatments but instead I am going to write about how MS scared my husband away the first time he saw I was sick.  I found a state during invisible illness week and really shocked me but in the same sense it made total sense to me.  It said that 75% of marriages where one person has a chronic illness end in divorce.  I am shocked by this but I also know it is true because I am one of the 75%.  When I worked at the nursing home I saw it all to often.  Peoples spouses would leave them once they got sick.  On the other had I also saw the husbands that stuck around.  I was always in awe of the ones that stayed with there spouses. 

It makes me sad that people are so shallow that they leave when things are going as they hoped.  It hurts me because I was 100% honest with my husband before we got married and once he finally saw that I was sick he left a few months later.  I would never leave someone because they are sick.  Just because we are sick doesn’t mean that we aren’t people who don’t have feelings!

This weeks post is short and sweet because I am angry about people leaving when someone has a chronic illness.  I am not sure if my post makes sense or not but it is what it is!  As always if you want to know anything leave me a comment and I will write about it!