This week’s MS Tuesday post is going to be an update to my post where I talk about the treatments there are for Multiple Sclerosis. If you want to check out the original post you can click here but I am going to copy and paste the old post and updated it with the new treatments that have come out since that post was originally published.
I am going to do a small overview of the different Multiple Sclerosis medications out there right now. 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.
Since I posted the original post they have come out with several pill’s that you can now take. Before you had to have shots and/or an infusion so coming out with pills was huge for people who have MS. The names of the pills are: Gilenya, Tecfidera and Aubagio. I don’t know much about the new drugs out because right now Tysabri is still working for me so I am not in a hurry to try any new medication right now.
They will sometimes give a person steroid treatment if they are having an MS flare 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 different MS medications and if you would like to know which ones I have taken and how they affected me please let me know. There are also medications that we are given to help manage side effects of medications and also to deal with how the disease affects each of us as well. If you would like to know anything else please let me know!
I had an MRI the last Saturday in August and I just had my 6 month appointment with my doctor so I wanted to write a quick update. I am sure most people aren’t really interested in these updates but I want to be able to look back later and see what has changed and this is the easiest way to record how things are now.
Anyway let’s get on to how things are for me now. For the most part things are okay. I mean I don’t feel good hardly ever but I am starting to think that this is my new normal and because of that I am not going to really complain about it. I know things could be so much worse for me so I am trying to stay positive about everything.
My latest MRI showed that I am still stable and there are no signs that I am developing PML so I can still stay on the Tysabri. Which for me is a great thing because it is the only thing that has ever kept me stable so for me it does work and I don’t know what I would do if I had to stop taking it. I know that there are pills out now but they are still so knew that I don’t want to start on them until they have been out longer.
This is also the first appointment in years where we didn’t change any medications and we just are going to keep doing what we are doing and see what happens in the next few months. The only real change is the fact that my doctor wants to start seeing me every three months now instead of every 6 months which isn’t a huge problem just more time-consuming is all.
So all is all I am still stable and nothing much is really going on so I can’t really complain about things now. I have the MS Hug happen a few times in the past couple of weeks but it is hard to say that is what it is when it could also be my back injury so who knows about that.
If you have any questions or requests for something you would like to see please leave them in comments!
I know I have written posts about this in the past but right now it is something that is bothering me again. I am so sick and tired of Multiple Sclerosis right now because I am tired of feeling like crap. Everytime I go to the doctors they are switching up medications to try and make me feel better but nothing ever works. I am just tired of everything that has to do with Multiple Sclerosis and just not feeling well.
I know my situation could always be worse which is why I don’t talk much about how I am feeling but I have reached a point where I need to write about how I feel so that I can at least get it out and off of my chest. I also know that in the world of MS I have been relatively lucky as far as the disease progression goes but like I said before I am just sick of the disease.
I am sick and tired of being sick and tired. I know there really isn’t anything people can do about this at this point but I still wanted to write this because I don’t know that I have ever read a blog where someone with MS was totally honest about how much the disease sucks. I know this will pass and I will get back to the point where the things just roll off of my back but right now I just want to bitch about it. I also want to let others know that it is okay to be pissed off about what the disease does to us.
I am also tired of people thinking I am lazy because after I get off work the only thing I want to do is go home and go to bed. I wish there was someway for me to explain to others how tired I get going to work everyday. I wish I could find something to give me more energy but as it stands everything I have tried just makes things worse. I know if I could sleep I wouldn’t be as tired but like usual my health insurance company sucks and they won’t fill the one medication that does help me sleep and I can’t afford the medication without it being covered.
Anyway I am just bitchy and sick and this is what happens when I feel like this for months on end. How are things going for you guys right now????
I guess it is time that I write about what is going with me and the Multiple Sclerosis because I haven’t really done an update in a while. If you were to look at my you wouldn’t be able to tell that anything is wrong with me because everything that is going on is on the inside or at least if I don’t tell you anything is wrong then you won’t know anything is wrong.
For the last 2 or 3 months I have been exhausted to say the least. I wrote a post earlier this week about how I am not sleeping but this exhaustion is so much more than just not sleeping. It is so hard for me to explain the difference between being tired because of lack of sleep or being exhausted because of the MS. I don’t think there really is away for me to explain it other than saying I am so tired that if I could stop breathing I would because that takes more energy than I have.
I know that my lack of sleeping isn’t helping the situation any either so that gets to me as well. I just feel like I am falling apart and we have no reason as to why I am feeling this way. I had an MRI done at the end of August and when I went to get the results my scanned showed that the disease hadn’t been active in the last six months. Which should be a great thing but I felt confused and pissed off by it. I really wish the scan would have shown something so that there was some sort of reason for why I am feeling the way that I am.
After my last appointment I started on a new medication and I have taken it for a month and haven’t seen any change in how I am feeling so I don’t know if it is working or not. She did say that I could take it twice a day and I haven’t done that yet because I already take so many pills that I hate taking more but I think I am going to try to take it twice a day for a couple of weeks and see what happens.
It is so hard having something like MS because it sucks when you can’t figure out what is wrong in order to try to fix it. I have to wonder if I am going to have an MS relapse soon because this is usually how you feel before you have one or it is at least how I have always felt before one. As of now I am “stable” but I don’t think I truly am. There has to be something going on and it just isn’t showing up on the MRI. My next MRI is in February and I see my doctor again at the beginning of March so we will see what happens in the next few months.
So I haven’t ever written about my problems with sleeping on this blog but I feel I need to write about it because there may be other people out there struggling with the same things. I also hope that someone out there may have some suggestions for things I have tried yet to try to help me sleep. I have always had problems sleeping but in the last few years it has gotten 100 times worse.
I first really started to notice my sleeping problems when I was diagnosed with Multiple Sclerosis when I was 15 or 16. I have always had problems sleeping but I really started to notice them in high school and college. From the age of about 16 I was given prescriptions for Ambien and Sonata which are both sleeping pills. So at this point those two no longer work for me. When I was in my mid twenties they prescribed me Lunesta which for me was a wonder drug because for the first time I was able to sleep and I didn’t seem to get used to them.
I took those on and off for years. The insurance I know have through work refuses to pay for them and there is no way I can afford to pay over $200 a month for them so I haven’t been able to get them. Since I haven’t been able to get them I have had to start trying all the over the counter sleeping medications and I haven’t had much luck with them.
I have tried taking Melatonin and I will still take it sometimes but I have found that I have to take so much of it to get me to sleep that I end up with a huge headache the next morning. The only thing I have found that works is taking a combination if Tylenol PM & Ibuprofen PM along with a time released Melatonin pill to help me stay asleep longer because lately I manage to take enough stuff to fall asleep but I can’t stay asleep to save me life.
I have also stopped watching TV after work and I try not to use my cell phone once I am home so that I can try to wind down from the day but no matter what I try nothing seems to be working for me.
Does anyone know of anything else I can try to use for sleep? I will take any and all suggestions at this point!