I have a question for all of you....what MS treatments have you tried and what were your experiences? Now, I know that we all respond different, what works for you may not work for me. In fact the traditional MS meds have not worked for me. When first being diagnosed I did Copaxone. I did not have any real side-effects (the worst of it was site reactions) but it did not really seem to do anything for me. At first I did not get any worse, so maybe that was working, but I did not get any better either. After my first exasperation since the diagnosis, then it did nothing for me. I just progressed and was eventually taken off of it. Then I was put on Avonex which I really did not respond well to. Although I know of people who have done well on the interferons, this was not the case for me. Not only did I experience probably every possible side-effect known for this medication I had 4 exasperations in less than a year while on it. Not to mention I progressed more while on this medication then any other time, to the extent that sometimes I think this particular medication made me more sick than had I taken nothing and just let the MS run its course.
For the last two years I have been taking Mitoxantrone (also known as Novantrone). This medication has been the best thing for my MS. It is only taken once every three months (which is super convenient) and although I had to get blood work and an echo on a regular basis (to monitor any possible side-effects) it gave me my life back. I did better on this medication than any other and for the first time since my diagnosis felt hopeful about my MS. It not only slowed the progression of my MS, but I actually felt better. After two years though I am about at the point where I am not going to be able to take it much longer. I actually think if they allow me to take my scheduled dose on Tuesday, it will be my last one. I have had a total of 10 and you are not allowed more than 12 in your life. Plus, my latest echo shows my ejection fraction dropped from 54% to 45%. Normal is 55-65%. From what I have been told, 45-50% is not anything too scary, but it is a sign of some heart damage, which is the big side-effect with this med (which is why you can't have more than 12).
So, here are my options.......I have been told that I can go back on Copaxone. This is a daily injection (as I am sure most of you know), the side-effects are limited and I can do it at home. The down fall is that I am not sure if it will work since it didn't really work for me before. I am currently having problems with my MS (although still better than before starting the smurf blood) and I am not sure I want to go backwards. I am no longer able to do an interferon and I don't want to. That was just hell for me and considering how it effected my liver, I won't ever have to. I am unable to take Tysabri due to my past history of cancer. The risk for recurrence is just too high, not to mention the very scary idea of PML.
So, what are my options? Well, I have been told I have 3. They are all types of chemo's and they have their own side-effects. The first option (which I am leaning towards) is Cytoxan. It is not a common medication for MS. It was more common before Mitoxantrone came out for MS. This medication has similar side-effects in the respect that it can lower your blood count and immune system, therefore creating a higher possibility of infection. It does not have the risk of cardiac problems however and has been used to treat Lymphoma, which is the most recent type of cancer I had. The advantage would be not only that it can be used for several years in MS (assuming your blood counts don't drop too low) but that my oncologist believes it would help prevent a recurrence of my Lymphoma. The reality is that I may never have a recurrence and so that may not be an issue, but no one really knows one way or the other until it happens. Plus, I have known people who have done the Cytoxan (Lenita for example did it for 4 years) and it gave her her life back. This one is taken once a month, which is not too bad.
Then there is Rituxan. I think I want to stay away from this one. From what I have learned, this one is taken in a couple of ways. For MS typically it is taken in two doses, the second dose being aprox. 3 weeks after the first and then nothing for a while. Problem for me is that there is a risk of PML (like Tysabri) and a risk of pulmonary fibrosis. Considering my current breathing issues I am thinking this would be a last resort med for me.
Last but not least, I have been told I can take Methotrexate. I am familiar with this medication, kind of. I know of people with Rheumatoid Arthritis who takes this and has benefited from it. This one I have mixed feelings with. On one hand it has been shown to help with both MS and severe cases of Asthma. However it is taken once a week, can make you very sick (nausea, vomiting) and there is a risk of pulmonary damage as well as hepatitis. Considering my liver is already damaged from the first chemo I was on 7 years ago, I am not so sure. Plus, even though it has shown to help the inflammation in the lungs with severe asthma, the fact that it can cause other lung problems....not sure that is worth the risk.
So, I am asking all of you. Have you been on any of these meds (especially the 3 chemos)? I am very curious as to how you responded and what your thoughts are. Having said that I am very aware that everyone with MS responds differently to the different meds and just because something worked/did not work for you does not mean that it will/won't for me. I would just like to have as much information about these meds as I can get. So, please comment, email me, or contact me directly (if you know my number and are able). I would appreciate it. :)
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8 comments:
I have only used Copaxone, and I have been on it for over 2 years. Few side effects, though once I had a near-anaphylactic reaction (I have an epipen now). I recently had my only noteworthy flareup since I was diagnosed, but for the most part I've been doing great.
My only treatment has been on the clinical trial for Fingolimod (FTY720). I can't say enough good things about it. Virtually no side effects at all and I'm going on over a year relapse free beating my regular history with my MS so far. I'm on the extention of the trial now for 3 to 4 years because of the good it's doing for me.
HI Jaime,
I'm not sure that I've ever commented here before. I'm the one who organizes the Carnival of MS Bloggers.
Anyways, I've used Copaxone for about three years so far. Not really any problems with it. I've read some stuff about putting patients on Copaxone after Tysabri or Hi-Cy (the Johns Hopkins protocol) to "retrain" the immune system. So you might have much more benefit from it after having done Novantrone than before.
Also, I have rheumatoid arthritis which was diagnosed a year or so after MS. I take Metrotrexate for it and really get huge benefits. Yes, it is once a week. I take 10 pills of 2.5mg each which is higher than what some other folks use. I don't know the maximum which is used in MS only.
When I told my neurologist about this, he did say that it would also help my MS and I guess maybe it has. (But how can anybody really know?) One thing which is very important with Methotrexate is to take 1mg of Folic Acid daily. I actually take 3 pills of OTC 400mcg daily. It helps to balance some of the bad side effects, especially for the liver (I think).
Methotrexate doesn't make me nauseous at all. In fact, my body seems to like it.
So that's my 2 cents. Good luck. I'm curious to see which route you choose.
Lisa
Hey, Jaime...
Been out of the blog "loop" for a while, so many apologies. I've been "on 'em all" as I like to say, but not the various chemo drugs other than Rituxan and Novantrone...Novantrone worked for several months, then stopped as evidenced by enhancing MRI, so he drug was stopped. Now on Tysabri and just had what is being called a "relapse" while on THIS drug. Guess I'm not one to ask about these issues as I seem to suffer from a lack of faith in ANY of the MS drugs...and have MRI's and relapses to prove my point.
I do hope you find what works best for YOU.
Linda D. in Seattle
Mandy,
That is one of the nice things about Copaxone! I did it for about a year and although it kind of sucked to take an injection everyday, it had very little side effects. Having said that I have heard the Anaphlyaxis that goes along with it can be really bad....all anaphlyaxis is. I hope you never have to go through that again. Take care!
Jaime
Kim,
I am glad that you have had such good success with the Fingolimod. It is wonderful that you are able to partake in a study that is bound to help millions of us with this illness.
Jaime
Lisa,
I had never heard of Hi-Cy...something to check into. I was really glad to hear of your experience with Methotrexate. I have heard so many different things about what this drug can do...most times in regards to RA. Mainly how sick you can get with it. It does not appear they are going to go with Methotrexate at this point but I appreciate the advise on the Folic Acid anyway! :) Also, if you have not already, please add me to your Carnival of MS'ers! I make sure you are linked as well (I think you are already but I will doublecheck as my memory sucks!) lol
Take care,
Jaime
Gee, I wish I could help. I just take aspirin and vit D now, took Copaxone till I went 2nd progressve, you have a lot going on. I find that most blogers are farly new (under 10 years) to MS or have a mild case. Seattle wants to believe they are great when it comes to MS (though out of THREE neurologsts NONE have ever offered me amy of the drugs I read on blogs! ???) so, hopefully you will find something.
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