i've decided not to take the meds... I have a ?

[Beema]

Here's my opinion for what its worth. Do what you feel you need to do. Nobody else knows your body or your needs as you do. I think you should always trust your instincts.

I have been on a DMD for over 10 years. It has done absolutely nothing for my ms. As my neurologist told me they think it slows down the progression but they don't know really. Since I started taking this my health has went steadily down hill. In the same year after I started the ms meds I got a necrosis from it that left a huge scar in my thigh. Then I developed hypertension which has been very hard to control. From there came heart failure and high cholesterol. To add to it I got severe osteroporosis most likely from the steroids they gave me to take so the shots wouldn't cause another necrosis. I am now also diagnosed with autonomic dysfunction which I wouldn't wish on anyone. I truly believe that the ms meds actually attributed to all this and so does my primary dr. But keep in mind thats only our opinion as there is nothing to back it up.

Now they want me to take tysabri. I asked if it stops my ms. I was told that they hope it stops the progression but aren't sure. I have opted to not risk this med. I realize I can end up in a wheelchair but I know many people who have a good quality of life in a wheelchair but if you get pml from tysabri life is over. I choose not to take the risk. My neurologist is angry but he is respecting my opinion to a degree although at each appt he pushes me to reconsider. If he dropped me I figure thats his problem as I have a right to make my decsion and so do you.

[Momathome]

Hello,
I just wanted to say that I don't take the traditional meds either. I take Imuran (have other medical issues) and while it doesn't control my MS flairs totally, it is better than without it. I was diagnosed by a neuro-ophthalmologist who agreed that the shots are not more effective than steroids. I have yet to find a neurologist that agrees with him. He said it was the low cost option that deters research to be done on it. Not much to be made with a cheap alternative.

I have been in research for years now and I asked my boss (50+) years in research how a paper can be written to say that something is 30 percent effective in stopping flairs when the disease is so unpredictable to start with. He said that he didn't understand how you can put that figure in writing with the unknown.

I have progressed and now I need a wheelchair, but I don't regret not taking shots, (I did try one and had an allergic reaction) and I take steroids when I need them. I mostly try to limit my stress level and I am gluten and dairy free. I am not swayed by the fear tactics that some doctors use to get you to try medicines after I went to a conference that the doctor only advocated one drug. I read the research papers that are written to support the use of. Also, long term side effects haven't been reported on the use of these drugs.

Best of health to you!

[Ikoiko]

I have been in research for years now and I asked my boss (50+) years in research how a paper can be written to say that something is 30 percent effective in stopping flairs when the disease is so unpredictable to start with. He said that he didn't understand how you can put that figure in writing with the unknown.

Obviously your boss doesn't know anything about clinical trials or biostatistics. I take it he is not a medical researcher.

[Ikoiko]

I wanted to add: That is why there is a placebo arm of the study!

[Lendi]

No more advice from me. We are what we are and do what we must do whether or not it's right. None of us know exactly how the other feels. Sunshine, I admire how you're putting your daughter in front of yourself. That's a very unselfish thing to do. Like you, I'm a mother bear with a cub when it comes to my children. I would take every ouchie, sadness and bad experience away and absorb it myself if I could. I wish you both much, much luck, good health and happiness.

[LindaT5761]

Listen to what everyone here is saying & don't be too quick to judge

I hear you about meds. From what one hears, it sounds like they all make you sick on a regular basis, and I tend to get freaked out by injections. So, ick.

But not everyone gets the side effects, and not every drug makes every patient sick. With the help of a good neuro you can find the DMD that's right for you. Hang in there. You don't have to make this decision right now!

My neuro said deciding on a drug is not like buying a house, a decision that will have a major effect on your life for years to come. If after taking it you decide it's not working out for you, you can switch to another drug.

Right now I am trying to arrange my first Tysabri infusion, which would be my first DMD. It hasn't happened yet because of insurance problems. So it's been almost a year since I first heard I might have ms, and my dr. says I might have had it for 5 years. So I've never had meds. On the one hand I think I've gotten a lot worse, but on the other, when I read what everyone else is going through, my symptoms are a walk in the park. So periods of going without meds are a reality for some patients, whether they choose it or not. They're not the end of the world. But most likely it will be better for you to use DMD's but there are a lot of choices. Best of luck!

[Jules A]

My neuro said deciding on a drug is not like buying a house, a decision that will have a major effect on your life for years to come. If after taking it you decide it's not working out for you, you can switch to another drug.

It sounds like you have a smart physician.

[MiddleRiver1]

Reconsider?

Hi,

I haven't been on here in about 6 years!! A friend's brother was just diagnosed and I directed him here. So I took a moment to snoop. Your post inspired my re-surfacing.

I have been using Rebif for 8 years (WOW! how time flies!). Please do not assume you will be sick with side effects. I had some side effects for the first few months, but they were not hard to manage, and now I have none. ZERO. I also am doing well - playing racquetball 3 times per week and working full time.

I am a physician. I reviewed the data carefully before starting meds. I would not want to be in a position to second guess whether or not I did everything to slow the disease if my symptoms had worsened.

All that said, your neuro has an obligation to give you his best advice, but he/she must also respect that you make the decisions about your care. He/she should still support your care...but realize that he/she might want you to reassess your decision periodically.

Best wishes,
MR

[a.nukem]

I hope all goes well for you. I was on Avonex for about a year, and it actually wasn't terrible. I was sick for a while, then it became once in a while, then it was just tired the next day. I made the decision after one year on it, and looking into all of the different medications, that I just didn't want to do this to myself.

Now what I mean is that the mental and emotional toll, not physical, is what made my decision. It's not a deep needle I had issues with. It's not medication. It's not many things that caused me to go off the meds. It was everything combined. It was breaking down crying sometimes because I was grieving over having to rely on medications, being careful, etc. Perhaps it wasn't the most "mature" decision. But it was right for me. I've felt better, more awake, and mentally and emotionally healthier off of the injections. I only take Nuvigil for fatigue and levothyroxin for a thyroid problem now and I'm feeling better than I have since the whole ordeal began.

There is a good chance the drug was helping, but it wasn't helping me to LIVE. I'm only 20yrs old. In the end it was my decision, just as it is your decision, to take myself off of the DMDs and live my life as best I can for whatever healthy time I get. I hope that everything goes well for you and you make your choice, don't let others make it for you. - Tight hugs -

[Putty]

I've decided not to take meds also...I was diagnosed in 1991, probably had it 10 years before that...in the beginning there were no meds and then when they came out my number one reason was my 3 small kids..second was side effects...I don't like meds and it's always me who gets them...I have had exacerbations every year..sometimes 2 or more...If I did the meds I would really want to know if it would help..not wonder if this is the way it would be anyway...I do have to say I think about if I made the right decision at times especially during exacerbations...right now I have a Neuro who says unless my MRIs change I can stay off but if she sees a change she will be all over me to get on them...

[Jules A]

[QUOTE=Beema;1299097]I have been on a DMD for over 10 years. It has done absolutely nothing for my ms. As my neurologist told me they think it slows down the progression but they don't know really. Since I started taking this my health has went steadily down hill. QUOTE]

How do you know the medications haven't done anything for your MS? Sady MS is a chronic, progressive disease that tends toward making people go steadily down hill.

[STEVEP]

I was dx'd in 1986. Around 1993 I had my first real flare up. I did not have a neoro at the time, so I choose one blindly. I was offered Avonex. At the time the studies showed very high suicide rates (maybe over 10%) and a very intimidating list of other side effects; I opted not to take the drug. Not further real problems for 10 more years.
Then it all started to hit. Copaxone did no good, so my neouro opted for Novantrone as I was progressing down hill fast.

Today I cannot walk very well and often wonder how well I would be walking if I had taken Avonex in 1993. Looking back, I would definetly take it. It still is a not a total cure, but statistically it is supposed to help about 33%. Statistically speaking, then it would only take me 2 minutes to get to the bathroom instead of 3 minutes.

[SNOOPY]

I was dx'd in 1986. Around 1993 I had my first real flare up. I did not have a neoro at the time, so I choose one blindly. I was offered Avonex. At the time the studies showed very high suicide rates (maybe over 10%) and a very intimidating list of other side effects; I opted not to take the drug. Not further real problems for 10 more years.
Then it all started to hit. Copaxone did no good, so my neouro opted for Novantrone as I was progressing down hill fast.

Today I cannot walk very well and often wonder how well I would be walking if I had taken Avonex in 1993. Looking back, I would definitely take it. It still is a not a total cure, but statistically it is supposed to help about 33%. Statistically speaking, then it would only take me 2 minutes to get to the bathroom instead of 3 minutes.

Hi STEVEP,

The first and only treatment for MS was Betaseron in 1993, Avonex was not FDA approved until 2003. Maybe you are confused about the medications you have taken?

[Waydwnsouth1]

I did not read all the posts so I may be a bit redundant. I take AVONEX and I am just finishing up my 3rd month. I must admit when I first started it was rough. But I have experimented with shot time and pre-injection medication and post injection medication. I take a 800mg (rx) ibuprofen about one hour before my shot and then again 4 hours later. I usually take my shot about 9:00-9:30pm that way I sleep through the flu like sx. But even those are getting less troublesome. The only problem I have is I still have is a bit of fatigue on Sunday morning. But usually by the afternoon I have some of my energy back and I am able to get out if I need to.

It was a no brainer for me to medicate. It is actually funny because my wife and I had a discussion about medicating about a month before I was dx and I told her I would not medicate even if I were to eventually get a dx. Well. when I was dx and my neuro recommended AVONEX I immediately asked how soon could I start? That is a very personal decision and not to be taken lightly.

You may have already made a decision up about medicating or not by the time you read this so best of luck with whatever decision you make/made. Hopefully it will treat you well.

[SNOOPY]

Hi STEVEP,

The first and only treatment for MS was Betaseron in 1993, Avonex was not FDA approved until 2003. Maybe you are confused about the medications you have taken?

My year on Avonex is incorrect:

FDA approval years:

Betaseron - 1993
Avonex - 1996
Copaxone - 1997
Rebif - 2002/3