Just Diagnosed and Need Advice

[tennismom]

Hi all, a quick introduction. I am 41, married with 5 kids (ages 8-15). I've had some symptoms for the past few years that I blew off as injury (I'm fairly active with tennis, running and biking) or the result of having a large family and constantly on the run. My husband finally insisted I go to the doctor last September about my facial numbness and blurred vision and fatigue that seemed to come and go but was especially bad last summer. The PCP sent me straight to the neuro who sent me straight to an MRI, which led me to an MS specialist a week later. I had several spots on my brain, with two that were highly suggestive of MS (black holes). A few months later a repeat MRI due to MS hug symptom revealed a small lesion in my Cspine but doctor wasn't sure if new or old. Another repeat MRI (brain, Cspine and Tspine) on May 1st revealed that my brain lesions were stable, the Cspine lesion had resolved but there was a new Cspine lesion. So, I'm now officially diagnosed with MS.

The reason for my post…..I have an appointment this Thursday to discuss the diagnosis and medications. In researching the different medications, I came across a blog post, "Save the Brain, Early and Aggressive Treatment for MS". I know this is probably not the appropriate area for this question but I thought I might get the most responses here. Any opinions on starting a more aggressive treatment early before long term damage has been done? I have to say I'm tempted to push for this. Curious to know what others have done. Thanks!

[Stacer]

I was on copaxone for 7 months before starting tysabri. I gained a lot of disability over this time. I often wonder how I would be today had I started tysabri right away.

[hunterd]

when I was diagnosed you either took one of the ABC drugs. There were no others. So my choices were limited and I ended up taking Avonex. I am sorry that I cannot be any more help than that, but if I had to choose now, I would go that route of taking the most aggressive treatment that I could. Good luck to you!

[abeautifullife]

Do know going in that, at least in the US, some of your choice of DMD will be based on insurance coverage. My insurance would not cover any second generation MS drug until I had tried and failed on at least one interferon and Copaxone. You may not have a choice but to start with a CRAB drug.

Don't let this completely discourage you, though. I picked Rebif and, by all accounts, am doing very well. No sign of progression at all. Yes, damage could be occurring that can not be detected, but that is true of any current MS drug. I feel great on my interferon drug, though, honestly.

[KatieAgain]

I am sorry about your diagnosis.

Your question is a very personal one that really should be discussed with your Neuro, because it really depends on the flavor of your disease.

I would read up on the different Therapies available and the side effects and risks and make a decision from there.

Look at the medication forum...lots of personal experience in there on all the drugs.

Good Luck in your choice.

[Bob698]

The drill isn't to find the strongest med, the drill is to find the med that works best on your MS.

Stay patient, keep an open mind, and work with your Drs. Sometimes it takes a while to find that "best fit".

[Bob698]

BTW, just as a follow-up, try not to trust Dr. Google and Dr. Wiki.
There's a raft of "fringe science" and "cures" on the web. Stay informed but stay smart.

Put yourself in a more normal situation: woukd you trust a Dr. in a lab coat with diplomas on the wall or someone who posts info from a basement?

[tennismom]

Thanks for all of the replies! I really appreciate the insight from people who have "been there, done that". I had my appointment today and I'm going with Tecfidera. Now, just have to wait for insurance approval and delivery. Have my fingers crossed for minimal GI issues and no activity on MRI in 6 months! I also plan to be better about regular exercise. Fatigue has caused a vicious cycle for me. I'm too tired to exercise and not exercising could be worsening the fatigue. My neuro did say that regular exercise does help with fatigue for SOME people, hopefully I'm one of them. Thanks again for the replies!

[plethora]

My opinion--Save your brain

Just my opinion, but I think hit it early and aggressive is the way to go. Virtually every cutting edge MS researcher says the same, as you probably read on the blog post. Most neurologists who advise otherwise are not MS specialists. I would do Lemtrada tomorrow if it could...

FYI, I am taking Gilenya and it has been great so far. No noticeable side effects, and is considered highly effective. Good luck with your decision!

[Thinkimjob]

The trouble is there is no cure, and the stronger and arguably more effective the drug, the greater the side effects and general risks to life and health.

There's the old quality of life argument you have to consider.

You will most likely be taking a variety of these drugs for the rest of your life, unless they come up with a cure. I've been on Beta and Copaxone for the whole 18 years.

Had to stop mild-mannered old Beta when lots of my white cells decided to up stumps.
i took Aubagio for about four months, and I can't see how anyone could possibly take it for years on end. Hair started to fall out within weeks and my liver did not like it at all.

Now I've reached the point where the risks associated with Lemstrada are worth taking. It worries me a little (or I may be jealous, dunno) to see heavy-duty, risky drugs are now being prescribed as first line therapies.

I do think the earlier the drug companies can get people on these things, the better their results will look. Which is no doubt the reason some neuros want to prescribe dmd/ts after the first flare.

That's very cynical, and probably not fair at all.

It would be one thing if the drugs were a cure, but they're not.

Any hoo, it's up to you.

Good luck.

[dyin_myelin]

I came across a blog post, "Save the Brain, Early and Aggressive Treatment for MS". I know this is probably not the appropriate area for this question but I thought I might get the most responses here. Any opinions on starting a more aggressive treatment early before long term damage has been done? I have to say I'm tempted to push for this. Curious to know what others have done. Thanks!

I think you're referring to the "save the gray" post on the UK blogspot? It's run by two doctors and the material is referenced, so I think it's a credible source. I especially like how they answer posts directly, you'd never see that over here. I share your sentiment although before taking an aggressive and potentially lethal drug before I was dx I would even skip taking aspirin. Cognitive damage has definitely been done and it makes me heartsick, but maybe it will keep me moving. The drugs can kill you, but so can the MS.

[Marco]

Hi TennisMom,
I'm sorry you about your diagnosis, but glad you found MSWorld. As a mother of 5 (Happy Mother’s Day) and a wife, you will need to find a balance between benefit and risk factors. There is nothing wrong with requesting an aggressive treatment from your neurologist, but it may not be as easy as sorting one column of information and picking the top medication.

A few years ago, we had an eenie-meenie-miney-mo selection of injection drugs that all reduced relapses by roughly one-third. Then we had Tysabri that was much stronger than the injection drugs, but could literally kill you under specific circumstances. After that, doctors used a variety of medications off-label to try and corral rampant MS progression. These medications were primarily chemo drugs and reserved for patients that did not respond to traditional treatments. Campath was one of the drugs used off-label that is now attempting to reach the MS market under the name Lemtrada.

If a patient’s Relapses, Progression and MRI (RPM) slowed after starting a medication, neurologists were generally satisfied with the outcome. Provided MS was fairly well controlled, slow progression was both expected and tolerated. When researchers discovered that brain damage could happen earlier than previously thought some began to call for more aggressive treatments sooner rather than later. With more choices on the market, neurologists are become less patient with mediocre medication performance. I believe this is exactly what you are referring to.

Just this month, Tysabri underwent a label change to now consider it a first-line drug. This means more patients will select it as their initial and more ‘aggressive’ therapy. While Tysabri is aggressive, over 100 patients have died as a rare complication of its use. So before rolling up your sleeve and getting Tysabri infused, you will need to understand your personal risk factors. Your neurologist will need to order a blood test to determine if you have been exposed to the John Cunningham virus (JCV) (most people have). Many patients are thrilled and loyal users of Tysabri and agree to accept the risk for the benefits.

Three oral medications (Gilenya, Aubagio and Tecfidera) recently hit the market. Two of the three have stronger efficacy averages than the injections, but still lower than the infusion medications (Tysabri, Rituxan, Novantrone, etc). The data set is still being built on these oral medications, but statistically should result in improved outcomes versus the injection therapies. If considering orals, please look at the long-term safety profiles as they greatly vary.

The problem is none of these medications are predictable down to the patient. As an individual, you might do better on Copaxone than Tysabri or Avonex than Gilenya. There are no biomarkers or indicators to determine how you will fare on them. The best thing you can do is have an honest conversation with your neurologist and explain your situation. You can even ask, “If I was your mom/sister/daughter what would you suggest?” What I can tell you is that you are on the right track. Becoming informed and being your own advocate will pay dividends now and in the future.

Please post any follow up questions and we’ll collectively do the best we can to answer them.

[kjmckenna]

Sorry to hear of your diagnosis.

I remember distinctly being diagnosed in 1997 where family was distraught thinking of the media hype (Annette Funicello comes to mind). I'm not saying it will be all rosy but it's not a death sentence either - so keep your spirits up!

I am highly functioning and people are shocked when they hear I have a disability. It hits everyone differently and medication is a personal choice with many factors playing into the decision.

My experience - I started on Avonex, switched to Copaxone for a brief period, went back to Avonex and then switched to Rebif. I got really tired of giving myself a shot so am now on Tec as I wanted to wait at least a year to see what people were saying. Over the course of 17 years, there were times when I got tired of meds so went off and every time I had an exacerbation so I am a believer in taking something but has to be right for you.

I have been working out with a trainer since 2006 - not always diligent but when I do go we work on exercises for stability & flexibility. I am convinced this has been HUGE for me continuing to function normally!

I am heading into my 4th week on Tec and it's been tolerable. Some GI issues which are more severe if I skip meals OR take too close together (I ensure my doses are 10 - 12 hours apart). I have had sporadic insomnia but as you posted in the beginning - is it the stress of a full time job, being 45, 2 boys, MS or the medicine? I read on another post that someone had a peanut butter cracker before going to bed - had one last night and it worked like a charm.

I am feeling more myself on Tec and less foggy than I was at times on the other meds.

Again, it will be a personal choice what works for you/your life but I am convinced that lessening the lesions/exacerbations is the way to go to stay healthy until they find a cure. I get a monthly newsletter for my state's MS Society where the information is positive versus some of the MS boards on the internet so be careful what you are reading.