Are the Meds worth it

[ibkensayers]

I find it rather offensive that you would accuse Dave B. of being a drug co. shill without apparently taking the time to read about him. He's tried DMDs and progressed anyway, and is now 2 years into a stem cell treatment trial. Your cynicism is blinding you.

I'm truly sorry for any offense I have caused, but I meant no disrespect towards Dave B. I thought his article was very well written and the best I have seen as far as promoting the the use of the drugs. I meant it more as a compliment than anything else. If I was in charge of marketing the drugs for MS, that is the angle I would want to take. Fear is an excellent motivator. Doctors take this same approach. I don't like being cynicle, but I can't quite get over the facts that I am being presented with. At a cost of well over 30,000 a year and substantial health risks, they can only offer a 30% chance of affectiveness. That to me is appauling. I am totally sincere when I say I mean to offense to anyone. I am just a little put off when people talk about what could happen with this disease suggesting the need for the drugs when there is a 70% chance it will happen anyway. I just don't like the odds.

[BigA]

No one actually pays $30,000 per year, so we at least shouldn't be talking about that.

Do what you have to do. You can get a primary care doc to take care of you or just find another MS specialist.

I fully understand your reluctance to take the DMDs. I take Avonex because it's one more thing I can do besides the diet, exercise and meditation.

Seriously - if you had to choose 1, copaxone doesn't require the doctor visits to check your liver. Other than that, you can throw them out. Or get a pill and take it or not (less space).

But I think you can easily find another doctor. I've seen 4 doctors just to find one I liked. Don't get stuck on him. Kiss his *** until he signs off and the start looking for another.

[MarkLavelle]

... I am just a little put off when people talk about what could happen with this disease suggesting the need for the drugs when there is a 70% chance it will happen anyway. I just don't like the odds.

I know where you're coming from, but I prefer to see Dave's post in a more positive light, and not about fear at all. I prefer to think of DMDs as insurance. I'm probably practically quoting Dave, but: Why wouldn't you do everything you could to avoid the neurological degeneration that is guaranteed (given what we know today) to happen anyway?

As already noted, you will never pay the "retail" price of any DMD. And I don't know anyone foolish enough to think that the drug companies value patients over profits, but that doesn't mean the drugs are more harm than good.

The side effects of each DMD are different for everyone (although the interferon meds have a lot of simlarities), and Dave's point (IMO) is that you should at least try to find a DMD that you can personally tolerate (for as long as it seems to keep the MS at bay).

I don't have choices yet (already compromised immune system), but If I did I would try the DMDs in this order: Copaxone; Inrterferons (RAB); whoa, Nelly! (I do have a more serious problem with the chemo-like DMDs and would be doubly cautious).

So, given that there are many options and any one person will not have have as many side effects with some DMDs as others, why would you not try to find one you can tolerate?

[MrsChip]

Hi Ken,

I've been on nearly everything now and I still can't answer your question.
Each Drug seems to work well with some, make no difference in others, and make others feel worse due to the side effects, anxiety about the jabs etc.

I can only tell you what i have experienced

Copaxone did nothing to reduce my relapse rate (in friends it is working well).
All the inteferons made my White Cell Count drop which gave me one infection after another. I found that I hated being conventionally ill with viruses and infections more than I hated my MS which still, 21 years in, is fairly mild and manageable.

Because of my poor reactions to the other drugs, they put me on Tysabri. 3 Months in I got major hives all over me so they stopped that. I have to say that I think that Tysabri was really starting to help me.

Now they want me to start Gilenya in a month. This has been delayed as after becoming allegic to Tysabri, they put me back on Avonex - low WCC, infections, viruses - I'm still fighting a nasty infection and on antibiotics after being off it for 6 weeks!

Like you, I'm starting to think "What is the Point for me" where DMD's are concerned. This last year with being allergic to Tysabri (th only one that seemed to help), and becoming bug central with my Low WCC has been the worst year I can remember.

I just know that having MS Relapses has never made me feel this ill and low.
Like you, I have no idea what to do next? My gut instinct tells me to take a break for a few months from Treatment, get myself well again and then have a rethink about Gilenya.

I was on no DMDs for the first 11 years of MS, but still handled my relapses, adjusted to any changes that needed to be made and basically just got on with it.
Please keep posting as I think this subject is important. If you refuse treatment, they make you feel like you a reckless idiot, but it's our bodies, our lives and our choice.

Take Care
Rach

[Alicious]

At a cost of well over 30,000 a year and substantial health risks, they can only offer a 30% chance of affectiveness. That to me is appauling. I am totally sincere when I say I mean to offense to anyone. I am just a little put off when people talk about what could happen with this disease suggesting the need for the drugs when there is a 70% chance it will happen anyway. I just don't like the odds.

I believe you are misunderstanding what the percentages mean. It is a 30% reduction in progression of the disease, statistically, not a 30% chance that it will work on a given person. In theory, pretty much everyone on the drug, or the right one for them, will benefit from it. Whether or not the amount of benefit warrants the cost and side effects is an entirely different question, but it's not that only 30% of people will see a benefit, although that is a common misunderstanding.

[Bob698]

No one actually pays $30,000 per year, so we at least shouldn't be talking about that.

Do what you have to do. You can get a primary care doc to take care of you or just find another MS specialist.

I fully understand your reluctance to take the DMDs. I take Avonex because it's one more thing I can do besides the diet, exercise and meditation.

Seriously - if you had to choose 1, copaxone doesn't require the doctor visits to check your liver. Other than that, you can throw them out. Or get a pill and take it or not (less space).

But I think you can easily find another doctor. I've seen 4 doctors just to find one I liked. Don't get stuck on him. Kiss his *** until he signs off and the start looking for another.

Not meaning to beat the horse, but I get the feeling some of you are not aware of what having a CDL means.
A CDL is regulated like a pilot's license. The Dr. is supposed to report certain medical conditions to the licensing authority if they find them.
Think about this thread the next time you find yourself sharing a two lane road with a Semi.

[BigA]

Not meaning to beat the horse, but I get the feeling some of you are not aware of what having a CDL means.
A CDL is regulated like a pilot's license. The Dr. is supposed to report certain medical conditions to the licensing authority if they find them.
Think about this thread the next time you find yourself sharing a two lane road with a Semi.

True - but DMDs don't help with any symptoms, so I'm not sure how the doctor's insistance on taking one would make anyone safer. Certainly if he noticed a neurologic deficit, then he should bad him driving - but the way I understand it, it wasn't the case. There are doctors who insist on their patients taking a DMD and it looks like the doctor is forcing him to take one, holding his license hostage.

But if he is disabled or has an exacerbation, he sholdn't drive and the only theoretical reason I can see for taking DMDs would be to take copaxone so that the risk of having an exacerbation while on a long-haul trip is diminished.

[Bob698]

You're trying to sell that "DMDs don't work" stuff to someone who hasn't had any progression since he started his DMD.

[ibkensayers]

I believe you are misunderstanding what the percentages mean. It is a 30% reduction in progression of the disease, statistically, not a 30% chance that it will work on a given person. In theory, pretty much everyone on the drug, or the right one for them, will benefit from it. Whether or not the amount of benefit warrants the cost and side effects is an entirely different question, but it's not that only 30% of people will see a benefit, although that is a common misunderstanding.

Thanks for clearing this up for me. I really was not sure about this, but I did wonder if I had it wrong.

[ibkensayers]

You're trying to sell that "DMDs don't work" stuff to someone who hasn't had any progression since he started his DMD.

I sure hope you don't think I'm trying to sell you that DMD's don't work to you. All I'm trying to do is get all the facts I can. I am not trying to influence anyone in anyway. However, I am trying to point out my objections. If what Alicious wrote in a previous post is true: that I have mistuderstood about the 30% effectiveness, then that really makes a huge difference to me. Most of my complaints have centered around this. I'm really trying to decide on my course of action, not anyone else's.

I also hope nobody has to feel in danger that they are on the same road as I am. My driving is not in the slightest bit impaired by my condition and believe me I just went through 3 specialist, 4 MRI's, an EEG, and a recertification DOT physical in order to drive again. If any of the doctors had even the slightest doubt that my driving was impaired in any way they would not have hesitated to prevent me from driving. This is not, nor has it ever been a safety issue!!! You have a heck of lot more to worry about with the drivers who weigh 400+, Smoke cigarrettes, survive on a diet of donuts and beer, and get winded just climbing up in the truck than anybody should worry about me.

The real issue here to me anyway is my own health. That is the main thing I am considering in this. Are the drugs more helpful or hurtful. Reading through this thread shows it is not an easy issue and there are successes on both sides as well as horror stories on both sides. I am making my pro and cons list as I have been doing for the past several days. I'm am scheduled to be betaseron on Monday. That is when a nurse will come over and retrain me since it has been so long.

But from what I have read so far, I am more inclined to either stay off the medications or switch to Copaxone. It will make a huge difference how I feel with the medications.

All information is appreciated. I consider everything people say.

[freedom1]

Ken,

Whether or not you take medication is your decision and yours alone. You employ a doctor to perform a service and if the service provided is not up to your standards you fire him just as you would anyone else who provides sub-standard service to you. Medicine is not an exact science, and especially when you are talking about MS. There is still so much that is unknown.

Many here feel that the dmd's are the answers to their problems and for some people they do help, not work. They only have a 30% success rate and success is defined by possibly slowing progression and relapse rate. That leaves a very large number of people who never experience a slowdown brought about by putting chemicals into your body, which also opens a whole other can of worms with side effects.

I have used three of the crab drugs, my relapses and progression came fast and furious. When I stopped them my MS changed to a slow crawl. Coincidence? Who knows? Again medicine is not an exact science and ms is not an exact illness it is different for every person who has it.

You need to find a new doctor, one who is willing to work for you and to guide you. You need to learn all that you can about these powerful drugs so that you can make an educated decision as to what to do with your body, keeping in mind that for the majority of people these drugs have very little success and the trade offs are greater!

Good luck with your decision, it is yours and yours alone.