This Is MS Multiple Sclerosis Knowledge & Support Community

So I just returned from my Neuro out in Colorado, and it is official... I have the "rare" brain infection.

I have only been on Tysabri for a little over a year. I had no idea about the rebound effect, this was never told to me before starting. I knew about the odds of the the PML and I was willing to take that chance. I don't regret going on Tysabri, because it has been a good year, but I have definitely noticed a decline in the past month or so and it has gone quick, cognitive, eye twitches, and motor skills, the Neuro noticed them too. He wants to overlap the treatments, put me on Copaxane and Steroids to try and prevent the "rebound" effect...This seems like a lot of drugs in my system?

As far as emotionally I guess I am still in the denial phase of things I really don't know what to expect or know what I should be feeling. Honestly I don't know what is going to happen. My Neuro didn't really talk about what was going to happen. Or maybe he did and I just kind of blacked out. The whole appointment is kind of a blur after he told me that. I know that it is going to speed up the process of MS, but that is about all I know. I know that there are some experimental things out there, but honestly I don't know if I want to live my life chasing these things, I would rather MY LIFE, than chasing after the white rabbit, that may or may not exist. But I am signed up for the CCSVI treatment in NY and should be getting that sometime in November, but don't know what this means for that surgery? My Neuro was not too happy about me doing that surgery either...

Told my folks (I am 27) and of course they freaked out and told everyone, and from then on out, there has been a barrage of text messages asking if I need anything. I don't know if I need anything, I don't know what I need I don't know what is different from this week as compared to last week? I guess I could use an iPad.....I know that people are trying to be nice and care about me, but honestly I don't know what I need. What do I tell them? What am I supposed to tell them? I know that I need money? I think that I should just live my life until I am dead, is that such a bad thing? I think some may call that "avoidance", but maybe that is how I deal with things, avoiding them.

So that was my week, pretty crappy if you ask me, but I guess all you can do is take it in, and move on-

Wallace-

ShakyJay,
I'm saddened to hear about the change in your status in getting PML. I realize that you must be in a state of shock from the news and the rapid decline in your health. However, I hope that you can stay focused to follow your doctor's guidelines so that you can recover to a more stable status.

Here are some notes from a presentation I attended a while back that discuss treatment for PML. I hope that this is helpful. Will you be following a similar regimen?

Dr. Vincent Macaluso wrote:If PML is determined, treatment is plasma exchange 5x over a 10 day period to clear out the Tysabri. Steroids are given 10 days after plasma exchange in order to prevent massive brain inflammation from the immune system’s attack on the PML virus (immune system rebound inflammation aka IRIS, actually Immune Reconstitution Inflammatory Syndrome).

I'm sure that your family members and friends just want to help you get better. Perhaps you could have one of them go to your doctor appointments with you to be your advocate, take notes, make sure that your questions get asked and answered, etc. This could be especially helpful if you're having difficulty staying focused. I also tend to fade out into autopilot mode during times like these.

NHE

NHE wrote:ShakyJay,
I'm saddened to hear about the change in your status in getting PML. I realize that you must be in a state of shock from the news and the rapid decline in your health. However, I hope that you can stay focused to follow your doctor's guidelines so that you can recover to a more stable status.

Here are some notes from a presentation I attended a while back that discuss treatment for PML. I hope that this is helpful. Will you be following a similar regimen?

Dr. Vincent Macaluso wrote:If PML is determined, treatment is plasma exchange 5x over a 10 day period to clear out the Tysabri. Steroids are given 10 days after plasma exchange in order to prevent massive brain inflammation from the immune system’s attack on the PML virus (immune system rebound inflammation aka IRIS, actually Immune Reconstitution Inflammatory Syndrome).

I'm sure that your family members and friends just want to help you get better. Perhaps you could have one of them go to your doctor appointments with you to be your advocate, take notes, make sure that your questions get asked and answered, etc. This could be especially helpful if you're having difficulty staying focused. I also tend to fade out into autopilot mode during times like these.

NHE

Yeah I will be undergoing a similar regimen with the addition of Copaxone. He said that he wanted to start me on another drug as soon as possible, and he felt that Copaxone was the next step. I have already tried Avonex, but stopped it due to the adverse side effects it caused (sickness for three days a week, that kept me in bed).

I have taken my mom to one of my doc appts and vowed that I would never do that again. I may end up taking my dad to the next one, but I don't know. I am kind of a loner when it comes to these sort of things, but it may be worth it now to get someone else involved.

Like I said I am just kind of lost, its a lot to take in, like being diagnosed all over again, thought everything was going fine, finally had a drug that I liked that was not making me sick every treatment, and come to find out it was actually doing more harm than good.

Wallace-

Im so sorry for your news

I just tested postive for JC Virus and show signs of decline but not sure what is happening yet. I see the docs Feb 23. Did you have a positive JC test? How did they determine it was PML? Was it the MRI?

Praying for you.

ShakyJay, I am so sorry! I was on Tysabri for 14 doses and just quit because I am going to try CCSVI testing and treatment next week. Are you on Facebook? Declan Walsh has a page there for families of patients with PML (his wife has PML), you might want to look into that. There is some sort of experimental new treatment that seems to be working well in patients (besides doing the plasma exchange).

Here's a link to the FB page:
<shortened url>

Best wishes to you in your recovery!

Shaky Jay,

Something seems not right in your post. Did your neuro tell you specifically that you had PML and then sent you home! Or did your neuro tell you that you had the 'rebound effect' and maybe used the word IRIS? It seems strange to me, as a former longterm user of Tysabri, and a close reader of everything to do with PML, that you wouldn't have immediately been placed in hospital to receive Plasma exchange. I'm more hopeful that your neuro is talking about IRIS as its now common for them to interchange IRIS (a term which until very recently was used only in conjunction with a diagnosis of PML, the adminstering of Plasma exchange to remove Tysabri from the system as quickly as possible, and the bodies strong immune reaction (IRIS) to the Plasma exchange) with the 'rebound effect' of just going off of Tysabri, and the sometimes strong negative immune system reaction.

I am really hoping for you that something has been lost in the translation.

Best Regards.

yonderboy wrote:Shaky Jay,

Something seems not right in your post. Did your neuro tell you specifically that you had PML and then sent you home! Or did your neuro tell you that you had the 'rebound effect' and maybe used the word IRIS? It seems strange to me, as a former longterm user of Tysabri, and a close reader of everything to do with PML, that you wouldn't have immediately been placed in hospital to receive Plasma exchange. I'm more hopeful that your neuro is talking about IRIS as its now common for them to interchange IRIS (a term which until very recently was used only in conjunction with a diagnosis of PML, the adminstering of Plasma exchange to remove Tysabri from the system as quickly as possible, and the bodies strong immune reaction (IRIS) to the Plasma exchange) with the 'rebound effect' of just going off of Tysabri, and the sometimes strong negative immune system reaction.

I am really hoping for you that something has been lost in the translation.

Best Regards.

It is kind of confusing the way that I have to be treated. My Neuro is in Colorado, but I live in Kansas. So I have to be treated in Kansas and all of my Neuro's orders/perscriptions have to be filled through my local doctor here in Kansas in order to be covered by my insurance. So that is why he told me this and then sent me home to get my treatments/start the paperwork...I only had two days out there before I had to return back to Kansas and start back to work. The entire appointment with him only lasted about 20minutes, so that is another reason I am researching different Neuro's, I just don't feel a strong connection, as important as I know it is.

Rebound effect and IRIS were never brought up in our conversations. They drew blood last time I was up there and were going to run tests on it, and he assumed that I was contacted with the results, however I was not.

He stated that the next step that he wanted to take since I was not a local resident was to "ween" me off Tysabri onto Copaxone, with the help of steroids. I am receiving my shipment of Copaxone and should start that Wednesday next week. I am also getting an MRI to monitor my lesions every other month for the next 6 months (insurance company is gonna love me). So I should be off of Tysabri in March as my next injection is this Friday. The plasma exchange was never brought up as I had a major relapse last year and was pretty much bed ridden for 3 months, so I don't know if he was trying to avoid that, or if he just does not approve of that. He is highly against me getting the CCSVI treatment, as I knew he would be, but I told him I didn't care...

So unless I am completely misunderstanding something in what I was told, these are the facts I was given.

Hi Jay, sorry to hear the troubles you're going though, sucks to say the least....

When my wife stopped her Tysabri infusions a little over a year ago she went though a very bad relapse (that included strange tingling all around the back and side of her skull) and we were informed by our Neuro that she was experiencing IRIS (MRI confirmed swelling). She had been off Tysabri for about 3 months at that point (which is what we were told to wait before starting something else). The doc immediately put her on a 5 day intravenous solumedrol treatment for the swelling her in brain and she got on Copaxone the day the steroid treatments were done. Took about a month to fully recover but she did and has been fairly stable since. I hope the steroids, copaxone path provides you the same benefit!

I am so sorry of your news. I am still unsure what it means to have PML. I am on my 5th infusion and worry about this daily. Would you please post your new news and what you learn and experience? Any information those of us on Tysabri can get is very helpful.
I will be thinking of you and praying for some good news from the doctors.