Tysabi

[shel67]

Can anyone tell me their experience with this drug? Did you see any improvment with symptoms? Were there any bad side effects?

[shel67]

Sorry for the double post.

[shel67]

Thank you... I am hysterical. I'm just scared and worried I'm just going to keep declining. I know I'm making matters worse but feeling so bad from these symptoms, I don't know what to do.

[shel67]

Thank you... I am hysterical. I'm just scared and worried I'm just going to keep declining. I know I'm making matters worse but feeling so bad from these symptoms, I don't know what to do.

[essdipity]

No one has suggested your MS isn't causing problems, or that it's all in your head. What is being said is that getting really worked up will not help matters, and in fact will only make things worse. You seem to be almost hysterical, and believe me that does no good at all. Please try to calm yourself.

Every DMD has side effects associated with it. That doesn't mean you will get them, or if you do, that they will be intolerable. Often side effects diminish over time, and often they can be mitigated by various means.

All DMDs are effective or they wouldn't be allowed on the market. Not all work equally well for every patient. However, and this is a big however, it is always possible to switch to another one if over time one doesn't seem to be working.

You need to confer with your neuro and listen to what he or she has to say. You can make your MS a lot worse or a lot better through your attitude, which is under your control. There are loads of us here  who know this to be true.

ess

[shel67]

This really isn't I'm my head. I have worsened since the first attack at the end of January and everyday in April my leg started. I can reason that's two attacks but may 15 it worsened again. And things keep adding to it. Now I'm worried I've been attacked again on my left. I'm not imagining it. I wish I were.

And went isn't anything remitting? Having MS is one thing, I can handle that. But this is just way to much. I'm not having flares, I'm just getting worse.

[shel67]

They set up for me to try Aubagio. I'm reading how it's not as effective as they thought it was and the side effects seem to much.

I really wish I knew what was happening. This just keeps getting worse. I thought it was supposed to level off.

[kwarendorf]

Hi Shel

Please take this in th spirit in which I write. Try and calm down. We have been where you are, newly diagnosed and terrified.

Very little about MS happens quickly. even PPMS takes it's time. It is understandable that as you begin this journey that every twitch and tic is a sign that your MS is raging out of control. chances are pretty good that it's not.

Take a deep breath. whether you begin a DMD tomorrow or next month won't make a huge difference. Have a very thorough conversation with your neuro. Weigh the pros and cons of all your options. It's better to take your time and make the right choice.

Kyle

[essdipity]

How you feel is just one part of the equation, since our perception of symptoms is very influenced by our emotions. Telling a doctor we absolutely need Tysabri because of progression of symptoms is not a good idea, and is likely to meet with resistance, especially if we turn out to be JC positive.

You need to get your ducks in a row. Are you JC+? Talk to your neuro. Nothing will happen overnight or soon thereafter, but having your doctor on the side of a calm, knowledgeable you is very important.

ess

[shel67]

I'm afraid I'm progressing way to quick. I called leaving a frantic message with the clinic. I want a drug that's going to be as aggressive as this disease is. I'm trying to not get any worse. I can see since January the slow decline. It started with the intensely tingling hands than with the tight forearms and biceps then the dizziness came and then I felt that level off and stable somewhat and then before you know it I'm waking up with numb toes then the next morning the tight knee and thigh started with numbness in both legs and tightness in my right waist. Then I noticed my left side of my waist down feels like a burn when anything cold touches it. Then somewhere along the line the imbalance started. That turned bad then got better in about a week. Now the imbalance is manageable but the eyes are bothering me. Now the dang left side wants to act up and somewhere along the line when I walk short distances my legs vibrates and tingles in the shins.

How in the hell can I go from feeling normal and nothing to this?

So that's why I want to treat this aggressive so I don't get worse. I just wish I knew why it's so progressive. If just one thing world remit.

[kwarendorf]

Tysabri was my first DMD. I ws on it for 20 months. At 20 months I had converted to JCV + and the Tysabri was no longer working. While on Tysabri I saw no change in my symptoms. As was said, that is no what any DMD is for. I had no ill effects of any kind.

Kyle

[Artanis12]

You don't just pick Tysabri.  Tysabri is a big deal, not only from an insurance  $$ standpoint, but also from a health standpoint.  You have to be tested for JC virus first.  If you're positive, it adds another twist to the choice to be on it or not, because with JC positive comes the real chance of PML, and that you do NOT want.  You're doctor is not likely to prescribe it for you if you are JC positive, at least not for your first try of a DMD.

If it were me, I'd save Tysabri and it's risks and cost, until it's been demonstrated that a less risky drug isn't working.  I'm still thinking you should at least consider Tecfidera or Gilenya - they that are nearly as good as Tysabri, but that probably have less risk of fatality.

Karen

[shel67]

After feeling slight improvement Friday and Saturday that I'm wondering whether or not it was in my head. My left side feels weird. My right leg has the spasticity in my knee and part of the thigh but now I feel it in my left knee and thigh. I thought Friday I was feeling it but ignored it. Now I know I feel it.

What's weird is how I'm getting symptoms on the same side. I thought that wasn't typical of MS.

[immisceo]

Tysabri may very well be the drug for you. It is becoming more commonly used as a first line treatment than it used to be, but a lot of it comes down to insurance issues in the States. Some companies require a different drug to be tried first.

Do be careful about "so many report having improvement". People's reports are just anecdote and anecdotes ≠ evidence. It's not a great thing to base medical decisions on, at least not primarily.

[shel67]

I know but so many report having improvement. I think this is the drug I need. This is progressing too much.

[immisceo]

Disease modifying drugs don't treat symptoms. Those are treated separately through medications such as IV steroids, or those that specifically target spasticity, fatigue, depression, etc. DMDs play the long game by hopefully reducing relapse rates and possibly progression.

Here's a link to a community discussion by Tysabri users. http://www.medhelp.org/posts/Multiple-Sclerosis/Tysabri-Users---Past-and-Present/show/1569374