confused about medications

[mldunn]

Good morning
I was officially diagnosed with MS in May (after piecing together my story and symptoms I probably have had MS since 2005).

I am confused and frustrated about many things however, whether to start on a disease modifying drug is the most confusing at this point in time. My neurologist seems to feel my MS is at a point where these types of drugs will not provide enough benefit to warrant the potential side effects I may experience however, she is willing to put me on one if I want. Obviously, I do not want to put these types of medications in my body if there is not enough benefit however, not being on one of these medications contradicts everything I have ever read about treating MS.

I sought out a second opinion and was told by this Dr. He would recommend treating with gilenya, copaxane or tecfidera.

My mri shows lesions, symptoms seem to fit MS a lot however, spinal tap was negative. I am currently out of work on short term disability for extreme fatigue, cognitive issues, muscle stiffness/achiness in my arms, hands, legs and feet mostly right sided.

Any in put on taking medication vs. Not taking one of the medications would be very helpful.

Michelle D.

[hunterd]

WELCOME TO MS WORLD MICHELLE!!!! we are very glad to have you here!

It is just my opinion, but I would recommend a DMD.the longer you are able to hold progression off, the better.
TY work the best for me, but I do develop antibodies to it.

[mldunn]

Thank you for responding I appreciate your input as I navigate what feels like unchartered waters.

[mldunn]

Thank you for responding I appreciate your input as I navigate what feels like unchartered waters.

[Myoak]

If you are considering medications you may want to include LDN (Low Dose Naltrexone) if you subscribe to the theory of “first do no harm” in treating MS.

LDN is not everyone’s cup of tea, and is usually scorned by the Pharma ho treatment style exhibited by most conventional neurologists. They are only going to recommend drugs the FDA approved for MS, and nothing else, even if it is harmless. And LDN is harmless; it has been used in children with Crohn’s disease by Dr. Jill Smith at Penn State. In that Phase 2 trial LDN was tremendously effective for children with Crohn’s.

Naltrexone is FDA approved for alcoholism and narcotic addiction but not MS because no one will fund the large-scale trials the FDA requires as a basis for approving a drug, IMO. Nor is it likely a large-scale trial will be funded because Naltrexone is already generic and inexpensive. No financial reason for Pharma to fund trials for a $30-$45 per month competitor to their meds (Gilenya $60,000 per year, Tysabri $50,000 per year, Tecfidera $54,000 per year). A Pharma ho isn’t going to prescribe LDN. You have to research it yourself and find an alternative medicine doctor to prescribe it.

Many people report good success managing MS with various diets. I would not underestimate this avenue for dealing with MS and cannot emphasize it enough.
If you will excuse the grammar the most important thing I have to say is this: don’t do nothing!!! If you have MS, the sooner you begin treatment (whether it is diet, supplements, alternative methods, or conventional meds) the more likely it is you will find something which has good effect for you.

Keep in mind that much of what happens in MS is subclinical, so you want to be treating MS because as Dr. Vollmer at Rocky Mountain MS Center says, “the idea (of treatment) is to preserve your brain for your future”.

If meds scare you take a close look at diet and nutraceuticals. Reduce stress, exercise. There are peer-reviewed scientific studies supporting all these things. Don’t be stupid or lazy and think nothing is going on with MS just because symptoms remit. Early treatment will benefit your future quality of life.

MS World is a great site to investigate MS treatments. Lots of good info here in many, many threads. Good Luck!

[onlyairfare]

Michelle, welcome to MSWorld, even though we are all sorry for the reason you're here.

Because I've moved around a lot due to job changes, I have seen quite a few neurologists in several different states. They have all said that people with RRMS should be treated with a DMD. I am on Gilenya now and doing well, as I did before on Copaxone. I quit Copaxone because of the cost (my insurance then required a 25% co-pay, or $800 per month) but now that I have better insurance, I am fine with pills instead of shots.

Of course it's always a good idea to exercise regularly and eat a healthy diet too.

[Marco]

Michelle,
This is one of the most confusing topics in our community and I am having a very hard time responding to your question. I’m proud of the responses that were succinct as I keep writing volumes of information that may have limited value to you.

On this board, you will find a full spectrum of hardcore believers in virtually every option from bee envenomation to homeopathic/alternative therapies and those that fully support western medications.

There is no “silver bullet” and no one-size fits all solution. It would not be uncommon to start down one road only to double-back and make a different decision at a later time. Eventually, most of us settle on a combination of therapies for disease and symptom management.

To medicate or not to medicate should only be one element of your strategy to combat multiple sclerosis. This should include improving your diet, exercise & sleep habits. You should also look for ways to conserve energy and reducing stress in your life. Ultimately, you need to be comfortable with your decision and treatment plan or you will probably abandon it.

I struggled with the same issue as you did, but eventually decided to treat. I suffered on 3 different therapies before settling on my current one (Tecfidera). I am THRILLED to be on a medication that I tolerate well and improves my chances to retain my physical and mental faculties for as long as possible.

I only wish I could provide you a better answer …

[Tracelyn]

Michelle,
Welcome to MS World!

I think the decision to use a DMD is an entirely personal decision. The reason I say this is because there are 2 distinct schools of though on taking DMD's.

For me, I decided that DMD was the way for me to go. I know too many people who were not on meds, they progressed to PPMS. Will that happen to me, or any of us? I have no clue, but felt that this is one way of empowering myself against this disease.

Ensuring you get plenty of sleep, eat a good diet and limiting stress is very important, regardless of which way you go regarding DMD's.

I have used Copaxone and I am currently on Avonex, waiting for my first does of Gilenya. I look forward to not having to give myself a shot any longer.

I wish you best, and listen to your heart and decide for yourself which way you go, not what someone else tells you to do. Ultimately, you have to live with the decision you make.

[kjg22170]

DMD important but don't necessarily treat symptoms

Hi there, and sorry for what you are going through. I wanted to add what I feel is an important note to this discussion. DMD can be quite important since they work to slow or halt disease and disability progression. I failed the interferons and am on Gilenya and quite pleased with it so far (though different DMDs work better for different people; I am not suggesting you should go on Gilenya just because it works for me). However, none of the DMDs that I am aware of (with the possible exception of Tyabri, but that was just what an infusion nurse told me, and Tysabri has it's own issues) will help your fatigue. Your cognitive issues could be caused by your fatigue or by damage caused by MS. You will need a neuropsychology evaluation to understand your cognitive issues better. Anyway, I have to take a separate med, Provigil, to help with fatigue. It's a narcolepsy drug, but it helps me to an extent with my fatigue. My doc, who runs the MS clinic and research center at a top ten medical school in the US, told me that there are or will be clinical trials underway for meds to help with MS-related fatigue.

I just don't want you to confuse disease modifying -- slower or no disability progression, fewer brain lesions, and fewer flares (not always all three, but usually at least the first and third) -- with relief from all of your symptoms. I have been on four different DMDs over the years, and none has ever helped with my fatigue, and my doc never expected any of them to do so. Even if a DMD is working well for you, you will likely need a separate med for certain symptoms, especially fatigue. That said, most docs do seem to believe that early use of a DMD leads to much better outcomes down the road. Does your neuro specialize in MS? If not, I strongly suggest you make an appointment at an MS clinic near your part of the country. You might have to wait several months to get an appointment, but holding off for a matter of months before starting meds shouldn't hurt, even if you have had undiagnosed MS for several years. That was the situation I was in, and my MS doc told me that waiting a few months would not affect my longterm outcomes (I was breast feeding at the time and did not want to start meds right away). All the best to you!

[aredmosquito]

You have to decide what DMD is best for you, if any.

I can tell you some factors that came into play for me when deciding, if it helps.

Avonex is intramuscular, so the needle is pretty long. I already hate needles, so I wasn't cool with that. My neuro actually had examples of the actual needles for each injectable DMD. I didn't want to have to mix my meds, so Betaseron and Extavia were out. Copaxone is daily, which I wasn't a fan of because of the needle fear. And don't get me started on Tysabri. It scares me. I know it works wonders for many MSers, but right now it is a risk I am not willing to take.

As for oral meds, I felt Aubagio was too new and stays in the system too long without the washout procedure. I get bad eczema from dimethyl fumarate, so no Tecfidera. My heart rate is already too low, Gilenya would threaten my life with the drop in heart rate it can cause after first dose.

I spent my week in the hospital during my first relapse doing nothing but reading about medications until my eyes wanted to fall out of my head, lol!

I ended up choosing Rebif and am glad I did. Yes, it's still a needle, but I get the Rebidose autoinjectors. I don't manually inject, I don't load anything. Just take the cap off and press the button. I get no side effects after the five months of being on it, and I haven't relapsed yet.

Just remember that no treatment is one size fits all. The DMDs, diet, alternative medicine - none of them work for everyone. Good luck!

[Goldfinch]

Any in put on taking medication vs. Not taking one of the medications would be very helpful.

Michelle D.

\

Ok. Here's my two cents. Diagnosed relapsing-remitting in 2000. Had relapses often and increasing in severity before starting treatment.

Went on Avonex (DMD). Relapses subsided then quit. Three years later Avonex stopped working. Relapses started up again, increasing in frequency and severity. Stopped Avonex, went on Tysabri (DMD). Relapses stopped happening. Was on Tysabri for five years/72 infusions. No relapses.

Neuro pulled me off of Tysabri because of increased risk of developing PML, a potentially fatal brain infection caused by the JC virus. Now scheduled to start Gilenya (DMD). Hoping relapses won't start up again despite track record of having relapses when not on DMDs.

My neuro's favorite saying regarding treatment of MS:
Time = brain.

he is not a wait and see kind of guy, and for that I am thankful. Ultimately it's your choice, and I am glad your neuro sounds like the kind of doc that lets her patients choose their treatment.

I would urge you to consider treatment since you are already having significant symptoms. Every time you have a relapse, that is myelin lost/scar tissue forming that may not heal completely. If you can prevent it, you can possibly delay disability down the road. I say this because even when I had remission from a relapse, the next time I had a relapse, the symptoms were the same to start with and that was an indication to me that I still had residual damage from the last relapse.

Cause = effect.

Educate yourself, make your choice, always be your own advocate. Good luck.