I was just diagnosed with Remitting/Relapsing MS.
I have now been told that I have make a decision of Medicine to take for the rest of my life, which is fine but .... I am not sure which one to choose.
Could you all please give me some idea of the ones you are all using and the ones that you have found that dont.
Welcome to the site, Maggie. I'm sorry you were diagnosed with MS but this is a great place to realize you're never alone. I'm sure there are a million things running through your brain right now!
Which med to choose is a very personal thing. I've been on Avonex for a year now. The awesome thing about it is that it's only once a week, and you don't get any injection site reactions because it's injected into your muscle, not just under your skin. The needle looks intimidating, but it doesn't hurt. Personally, having blood taken and IVs inserted hurts a lot more to me.
The bad part is the side-effects, which are flu symptoms--fever, chills, aches and pains, etc. In the first few weeks of it, I got VERY sick. The only part of me that didn't hurt was my stomach. For most people, the side effects decrease and go away completely in 3-6 months. Some people don't get sick at all. The sickness starts about 4 or 5 hours after your shot and lasts around 24 hours. The degree of sickness and the time it takes for you to feel better from it improve with time.
For me though, and I'm not in the norm, I still get sick, though it's nothing like the beginning--that was rough. I still get chills, headaches, fatigue, and aches & pains. But it's not even comparable to how it was when I first started. I inject on Friday night, and on Saturday I wake up feeling pretty lousy, but I feel better as the day goes on. I know it's not normal to get this sick after a year on Avonex, but I don't want to switch meds yet because I LOVE that it's only once a week and I also love not having injection site reactions.
There are people here on the different meds, and some who take no meds at all. I'm sure others will pipe in here. But it's a personal choice, and everyone reacts differently--also, you can always change meds if it's not doing it for you.
Consider how many injections you want to do, the side effects, and what your doctor thinks. Remember that none of us can definitely tell you our choice of meds has actually helped our MS--all of these drugs are really a shot in the dark. I have had no relapses so far on Avonex, but that could be my MS, not the drug I chose. None of these drugs will help your symptoms. Their main function is to possibly reduce disease progression by 30% or so. Whatever you choose, good luck and welcome again to our MS family. There are many smart and kind people here who know how you're feeling.
Avonex started 11/07,
Stopped 4/10 due to no insurance.
Thank you April for your reply
Yes you are right...I have a million things going through my head but mainly I just want to try to "beat/control" this.
What I have learned today as I have "surfed" this web site is that I am not alone, that is for sure. The way that people support one another is great!!
This is my first experience with MS, and it has affected my eyes, in the begining, 6wks ago I had double vision, and now it only happens when I look a certain way. I have not returned back to work yet but I an hoping I will soon.
When you take your medication on Friday, how do you feel when Monday rolls around?
I definatly prefer the once a week needle that is for sure.
There are alot of different things to think about that is for sure.
Thank you for your help.
The internet and books is a great way to deal with MS in the beginning, and after. Learning and talking about MS helps it be less scary and less lonely. Ignorance just breeds fear, and knowledge is power.
Have you gone on a round of IV Solu-Medrol to help your eyesight? I've been fortunate in not having eye troubles, but the steroids are the treatment for that, and other symptoms. Hopefully it'll be over soon, and it won't happen again for a very long time!
I do my shot on Friday night (and make a fun ritual, like a party out of it) and I'm better by Saturday night. I have never, even in the beginning, still felt sick by Sunday morning. I know of others here who were on Avonex and felt sick for days, but that's not the norm, just like my continued side effects.
The once a week part is definitely a great positive. It's less time, especially when you're feeling good, that you have to deal with your MS in such an ugly manner. I think though that the flu side effects of Avonex are worse than the other drugs. I am lucky in that I don't work on weekends, and Saturday is a convenient day for not feeling too hot. I've found that it also gives me an "excuse" to rest since I don't do that enough during the week.
I am still in the "beat/control" thing. I think I always will, to the point that MS can be controlled. I'm still learning my triggers and things I shouldn't do, but I've been lucky so far. It's a huge deal and horrible thing to have, but life isn't over. I feel like I've grown for the better because of MS, that's one good thing I can say about it.
Avonex started 11/07,
Stopped 4/10 due to no insurance.
I have taken Copaxone (didn't work after awhile because I had too much scare tissue), Betaseron (didn't work for the same reason), now I take Avonex (Intra-muscular shot once a week) I have had the fewest relapses while taking this and it's convenient only once a week.
I've been on Avonex since Aug 06'. I never really had horrible side effects not even in the beginning. I give the shot, take 2 advil (some like aleve), then 2 more 4-6 hours later and that's it. Done for a week, until the next shot. There's no site reactions, stinging, burning, etc... It really is painless. As said before, the long needle is nerve racking but you get used to it.
My MS specialist at UCSF stated that he liked to start with Avonex. Mainly because it is less of a burden (once a week) and if it works great. If you need more med, more frequently then he goes to rebif. He leaves rebif as the second option. He also stated that some folks develop an allergic reaction to Rebif after 1-2 years of usage (it's more med than Avonex even though the same drug).
I think either drug is a fine choice. Avonex has worked for me. Rebif has worked great for others. The biggest obstacle is the side effects. When I started out I went into this thinking I was going to be sooo sick, it NEVER happened. I'm one of the lucky ones. Point being, everyone reacts different.
There is also Copaxone and Betaseron (sp?). I can't speak to those drugs.
Anxiousme, my MS specialist at the Cleveland Clinic said the same thing about the meds. He suggested that I start Avonex first because it was less of a burden, and said we'd try something else if we had to. If I do switch, which I will if I keep getting sick, I'll go to Rebif. There's some comfort in knowing it's just the same drug, and it's only three times a week.
Avonex started 11/07,
Stopped 4/10 due to no insurance.
Thank you for that information.
My pharmasist recommended that one too. Most of the people she is prescribing too is taking the Rebif. When you say "tired" are you still able to get through your day? I was originally thinking of the Avonex but I am having second thoughts now. I just dont know what the "right" one for is. How do people choose?
Thank you everyone for their views and thoughts. I very much appreciated them all.
I have not had much guidance from my doctors, so kinda feeling like I am on my own.
hi maggie! i was on avonex for 12 years (yes, 12 years!) & had no side effects to speak of til late 2007, so i switched to rebif a few months ago, but now i'm interested in tysabri, and looking for info on that...
I just heard about that antibiotic. What do you know about it? I am going to ask my doctor on Monday if I can do this.
Minocycline is an antibiotic that has powerful neuro-protective and anti-inflammatory properties. It has high bio-availability and is very effective in crossing the blood-brain barrier. It is off patent, and the cost is about $70/cdn for 60 100mg capsules. It is commonly used to treat adult acne and is given to the patient for 6 months or more for this. Many MS patients being treated for adult acne found that their MS symptoms disappeared or declined significantly while taking minocycline (and doxycycline and tetracycline), and this eventually led to controlled studies. Since Minocycline is off-patent and so inexpensive, the large pharmaceutical companies have no interest in it.
The university of Calgary found that measurable MS symptoms declined by over 80% after 6 months of minocycline at 200/mg/day, making it probably the most effective, and certainly the most cost effective MS drug therapy available, and it probably has the least side effects. It can be taken with food and milk (with a minor 5% reduction in efficacy) and I would suggest taking it mid meal or with a glass of milk, to buffer the stomach.
I have been taking minocycline for about 2 years, and I am using it to treat post Lyme Disease symptoms, and it has been highly effective in reducing my brain fog, neuralgia and joint pain.
There are various theories to to why it is effective, but it seems to prevent neuron death and reduce inflammation. However, there have been some interesting studies done recently where the presence of Chlamydia pneumoniae was demonstrated in all or most of 37 and 19 MS patients, respectively, in two studies. This is a bacterium which has been proven to be able to cause chronic inflammation and destruction of neurons, and coincidentally, minocycline is effective is destroying this bacterium. Additionally, MS patients who live in Lyme Disease endemic areas must consider the possibility that they may have Lyme Disease as a primary or co-infection that is causing/exacerbating their MS. I lived with untreated Lyme for 15 years and the symptoms were very similar to MS, until the last year when joint pain became crippling. Prior to that the symptoms were mainly neurological, including a bought of partial blindness. Minocycline is highly effective against Lyme Disease.
If your MS is being caused by infection, (and there is no way to know this for certain) then it makes sense to use minocycline as the first treatment therapy, and it may even cure the disease, but even if it doesn't it makes sense to try and clear any infection before moving on to other therapies.
Minocycline has also been shown to be effective against Rheumatoid Arthritis and a variety of other diseases which are sometimes considered to be autoimmune disease. There is no case on file, that I can find where MS was made worse by minocycline.
If you decide to take it, you should supplement your diet with lots of green salads, yogurt with active cultures and a good quality (refrigerated) acidophilis.
It can cause dizzyness in some people if they lie down after taking it. About one in a million women will develop a lupus like condition after taking it for several months or more, but this will clear when minocycline is discontinued, and if this occurs then doxycycline or tetracycline might be substituted. if infection is causing your MS then you might suffer from headaches for several weeks after starting it, and an increase in other symptoms while the bacteria die off in large numbers (Herxheimer effect), but this will pass.
Last edited by duncan1; 12-06-2008 at 02:57 PM.
Hi Maggie.Ive been on Rebif for over 2 years now. I absolutely love it. My first experience, before I joined here was with Copaxone- not a good one. I found out quickly that I was allergic to the drug. When I started Rebif, admittedly it was tough the first few months, but only for 5-6 hours a night and only on shot nights (3 times a week) and within a few months it was all over. Now, I can drive down the road and do my shot...like brushing my teeth, its nothing.
I havent had a single major relapse since I started on it. I had over 50 lesions when I was dx, and to date, not one new one! I go for MRIs every 6 months to monitor myself, and Im doing really well on the drug.
It is personal, and although once a week sounds better then daily or 3 times a week, the 3 timess a week is easier to get used to- your body adapts quicker..
but whatever you do, we will be here for you and to cheer you on. Welcome to our board,