Tysabri v. Gilenya

[Piper79]

Hello,

I am posting for my sister. She is 42, diagnosed at 20. She has been doing very well and progressing with PT until recently, when she started experiencing severe weakness on right side. She slumps to the right while seated. This started 3 days ago. We wonder whether a change in medication is in order. She had a relapse in August/September. She had discontinued all MS medications in April, I think. She started on Copaxone again in early December. MRI showed no new lesions, yet she continues to experience set backs.

I wonder if she should take Tysabri. I assume she tested positive for JCV in the past because she said the dr did a blood test and said she could not take Tysabri. When I spoke with her this morning, she said "Maybe I should take Gilenya again?" Honestly, I think she only took one or two doses, but was really worried about side effects, so stopped taking it and did not follow up with dr.

I do not know if her neuro (MS specialist) will prescribe Tysabri (given the positive test), and honestly, I do not know which she should take? Should she try Gilenya first, given whatever complication Tysabri may present? We have an appointment on Friday, but I do not expect we will be told -- this is what you should do. Appointments are usually like -- these are your options, what would you like to do, without a lot of explanation in terms of pros/cons.

[Marco]

Hi Piper! I'm so sorry you are both going through this. I only wish I had the answers you seek. It sounds like she is struggling and can really use a stabilizing force in her treatment. I'm glad you are looking out for your sister and hope you will get valuable information from MSWorld. Unfortunately, your sister may have be having another relapse. A relapse is basically new neurological symptoms, or the worsening of old neurological symptoms that last more than 24 hours (and not caused by something else, like an infection). Based on what you have said, I would seek prompt medical attention.

Again, the most pressing concern is to get her prompt treatment. I would personally call and see if the neurologist could get her in sooner. Express that she may be in a relapse and is not doing well.

A few other notes:

MRIs are the best lesion-detecting tools we have, but they are far from perfect. Do you know if they are doing brain + spine scans or just the brain?


It's unfortunate that neurologists seldom have the resources to properly educate their patients on medication choices complete with pros and cons. As you noted, most neurologists will not dictate what medications a patient should take. The same goes for MSWorld members; there are simply too many variables and too many unknowns. The basic rule is a medication change should be considered if you are having Relapses, Progression and/or MRI changes that exceed your combined comfort level. The problem you need to be on a medication long enough to give it a chance to work. Copaxone can take 8-9 months before being fully effective, but provides some benefit much earlier on. No medication is 100% effective day one, and each patient will respond differently to every medication. That's the kicker; we just do not know.

The neurologist may have a personal procedure, but there is no rule that precludes JCV+ patients from taking Tysabri. Many Tysabri patients are JCV+ and continue to take the medication. I also know neurologists that will suggest patients go on Tysabri for 3 or 6 months to try and subdue any rampant progression. On average, Tysabri is considered much more effective than Copaxone, and more effective than Gilenya. There are still patients that will do best on Copaxone versus any other medication. On average, Gilenya is between the effectiveness of Copaxone and Tysabri. One of the major benefits of Gilenya is the oral administration.


It will still be up for the neurologist and your sister to talk about medication choices and when the time for something more robust might be necessary. There are no definitive rules in this area and getting a second opinion could be considered.


It seems like the current priorities might be:

• evaluating and possibly treating the current neurological symptoms
• determine short and long term medication goals
  • I would want the relapses reigned in ASAP
  • My next concern would be what is the appropriate medication for progression control
  
  
• Consider a second opinion, but again do not expect a doctor to say "take this drug"

Many of us have been where you are, and there are just no easy answers. This disease can be frustrating and maddening in so many ways. Please respond with any follow-up questions, frustrations, or comments.

[pennstater]

You are a fantastic brother.

You could try the old tactic of " if this was your wife, sister, or daughter, what would you want them to take and why". I actually did use that once when trying to decide if I should stay on Tysabri and did get a recommendation from my neuro.

If your sister's compliance with taking a medicine is an issue, make sure you review that. Some are worse if you stop. Above all else, your sister has to be comfortable with the choice.

Good luck.

[Piper79]

Marco - Thank you for your very thorough reply. I find this forum very helpful. I feel like I have so many thoughts swirling through my head, and then a post like yours helps to organize those thoughts and give me some direction.

One point I completely forgot to mention. My sister also receives IV steroids, 1X per month at 1000mg. She just had a dose on Friday. The PTs thought maybe she had grown weaker because the steroids from prior month were wearing off, but of course, they do not have diagnostic experience and were just guessing.

She was also tested for a UTI, but they said no evidence of one in the in-house test. I think they were still sending a sample out to be cultured. It is impossible to get results without asking several times.

She is being released tomorrow. I just sent a desperate message to the neuro and receptionist, requesting an appointment on Weds so we can go right after she is released. I did have the neuro on cc when I requested the first appointment, which I requested ASAP, so he knows about her condition. As well as you can tell she may be having a relapse based on what I said here, I am sure he reached the same conclusion. UPDATE: Already heard back from the neuro, no apptmts available, so Friday it is.

Interesting question about the MRI -- whether spinal as well. I do not think I ever confirmed, just assumed they would have scanned her spine as well -- given her age, number of years since diagnosis and recent relapses. I know that she is at risk for SPMS, and an MRI of the spine would be needed to diagnose, correct? I will be sure to ask whether there was a spinal MRI.

Copaxone - I had no idea it could take that many months to work. The dr did suggest copaxone because she had done well on it for a number of years, and then started switching to the newer meds and then none, so I think the dr thinks at least she would continue to stay on copaxone.

When you talk about immediate treatment of the current suspected relapse, do you mean IV steroids? Is it "bad" to not treat a relapse with steroids asap? Her Sept/Oct relapse went on and on without treatment due to her unwillingness to seek treatment, followed by other medical complications. The neuro was unwilling to prescribe IV steroids due to manic episodes (SEVERE) that had followed in the past. One of her other meds had been changed, and now she no longer has mania following a 5 day IV treatment, which is kind of amazing to me, and something that I really pushed for.

Thank you again and sorry for going on and on!

pennstater - Thank you. Sister, actually, haha. That is interesting about the meds -- so some should not be discontinued abruptly? Will be sure to ask about that during appointment. Thank you.