Thursday, September 23, 2010

Gilenya or Tysabri? Decisions, Decisions

And no. Those are not names for future little Pattons. Although I could see a TV series 'Gelenya, Princess Warrior' being a big hit. Actually, those are the names of the two drugs I am supposed to choose between. So says my neurologist. I had a different kind of visit this time and I can't quite put my finger on why, but it was not very satisfying or inspiring. Maybe it was the fact that I wore my PJ's. Maybe it was just that time of the month. Or maybe it was the vegan cookie I ate for breakfast.
The morning started a little crazy when I called to confirm my MRI appt, as they had not called me the day before. As is their cutsom. To call, that is. Anyway, I did indeed have a 9:30 appt, but they were super booked as one of the machines had not been working the day before and they were trying to fit everyone in. The tubes are not that big and it was creating quite a back up. The receptionist asked how quickly I could get there.
I said 15 min. without traffic. But it was 8:00. So there was bound to be traffic. And I was still in my jammies.
'That's fine. We'll put you in scrubs when you get here. Just hurry.'
Jammies are well suited for MRIs as there are no magnetic fasteners to interfere. So I took a quick shower, had a sip of coffee, packed a change of clothes, and arrived in my pink flannel pants and t-shirt. There was traffic. So I cheated, never mind how, and got there in about 15 min.
They had the nice warm blanket ready for me and nobody gave me funny looks for my unbrushed hair or my PJs.
I chatted with the technician as he put the IV in. He asked how my MS was doing. I didn't know he knew. I suppose it said on the order somewhere. I told him I didn't know. I guess we'd find out. His cousin was diagnosed with MS a month ago. And is in a wheelchair already. I felt a little sheepish being able to hop on and off the MRI bed no problem. Especially as it has been about 19 yrs.
Afterwards I got dressed and found a comb in my purse. So my hair looked bettter. Not stellar. But better. I wasn't meeting Dr M for two hours, so I headed to Trader Joes for some snacks, then to Tully's for coffee and perusing of the WSJ, which I had had the presence of mind to pick up on the way down the driveway. Then I worked on my list of discussion points before heading up 30 min early to see Dr M.
The receptionist told me they could not find my appt- I had called them before I left to confirm as well-but that they got the MRI report and he could see me right then. So he did. I was a little disappointed as well that he didn't run the usual battery of tests. I had specially chosen my shoes to facilitate the walking heel to toe one. Also, last time, the nurse informed me that looking at your feet makes that one more difficult. So, if you ever need to, just look straight ahead. 
I think maybe he was a little  crunched for time, and that my have influenced the feel of the visit. Or maybe he was having a bad day. Or maybe it was any of the above listed reasons. I don't know. The  long. or rather short of it is he saw some persistent black holes on the scans- they were there in April-he does not put much stock in the 'diet as therapy' approach, so I decided to stop giving up dairy, and he'd like me to go on one of the stronger medications. Hence the fancy post title.
I did tell him that the left side of my face has felt a tiny bit odd. He said that was the side he was inspecting last visit. And my throat has not gotten better. Actually, I'm not sure about that entirely. I think it may have a little. But then again, I could just be used to it. He said relapses usually last  up to 6 weeks. Longer than that and its probably a permanent thing. He also reiterated that 90% of people go progressive in the first 20 yrs. After which, none of the medications can help. Of course there is that other 10% . But he expressed that he felt my case warranted some second line medication. He gave me my options and two months to think about it. Unless I decide sooner and call to tell him so.
I'm not thrilled about either option. Gilenya, sweet as it sounds, lowers your heart rate- you take your first dose at the hospital where they monitor you for 6 hrs. Then you take your colored pills and go home to try it on your own. It has nice side dishes of skin cancer, pulmonary issues- shortness of breath, coughing, pneumonia- edema in some part of your eye, which can lead to blindness, increased risk of infections, and there have been two deaths. Something about chicken pox. Which I had already, so that makes me safe. I think. Originally it was called 'fingolimod' and is somehow derived from a chinese fungus.
Tysabri was well publicized a few years ago and pulled from the market as there were deaths caused by PML,  a nasty brain infection. They think, now, that they can limit your chances of death by more monitoring.' Oh look. We were monitoring him. And now he's dead.' That last bit sounds a lot funnier if you read it with a British accent. Try it.  That's how I wrote it, and I thought it was funny. I was actually wondering the other day why it is that the Brits are so darn funny. And I don't think it's just the accent. They just really are a funny lot.
OK so they don't just monitor you, they can seemingly treat you if they catch it early enough. And they try to limit the time you are on the drug as every bit past 2 yrs or so increases your chances for death. So you sometimes take 'holidays' for a few months. But who knows what accumulated use might do to you. It has not been around that long. But is has been around longer than Gilenya and is just  a monthly infusion so not that big of a bother. Granted you're not killed by it. So actually I feel a little leaning towards it. I don't know what hell hole it was discovered in. I'm pretty sure there were no chinese herbs, fungus, mice, or spam involved. But I really don't know the secret recipe. It also has risk of other more benign infections as well.
There is a third drug I'm interested in 'laquinomod' but it won't be available til late next year, given it doesn't kill off all its trial participants. So I could pick one for now and maybe switch later. It's really difficult to choose. Pick your poison is definitely how it feels. But I have some time to research and sort it out for now. And I'll be having half and half and butter or whatever else suits my fancy while I deliberate.


Deb said...

What difficult decisions you are facing. I do not have MS, but my 30 year old daughter does and had been on Tysabri until she and husband decided to have a 2nd child. She has been off for a number of months and now that the baby is 7 wks, she has just begun her monthly infusions again last week.

She has done well on Tysabri, having been on in for a few years before this last hiatus. I say all this as background to letting you know that with my daughter, her comparitive MRIs showed that her plaque in her brain had reduced or in a few cases disappeared as a result of being on Tysabri. The Dr said that they believe in some cases the nerves remylinate and that is why with some people, they regain strength and usage. Just something to consider. She certainly is monitored throught the Touch Program which is what one has to do to be infused with Tysabri in the US.

Good luck with the difficult decision you are making. Did you consider getting another appointment with your neurologist just to go over your options again and to feel freer to ask questions you may have now that you've begaun to actively think about what is being offered?

briana said...

I did have pregnancy on my list of options. The more I read the more I'm leaning towards not taking the new drugs. I have had some lesions and even black holes disappear in the past. I just received the radiologist final report with the neurologist notes on where he disagreed. So it actually doesn't look like that much bad stuff is happening and I'd kind of like to wait it out awhile. But I am looking forward to seeng the neurologist in Nov and discussing some of the latest research I've come across. I hope your daughter is doing well. Congratulation on the new grandchild.

steve said...

I am male, 35 diagnosed with MS 4 years ago, been on Tysabri for 2 with no relapses (knock on wood) I am going to a group meeting in October where a local MS specialist is going to talk about the new pill. I tried Copaxone and other injectables but Tysabri so far is top notch. I am still interested in the pill, especially if it is cheaper.

Anonymous said...

Found you when googling Tysabri+black holes and wanted to comment about both drugs. I was on Gilenia for 18 months in a trial and came off it early (24 month trial) due to the side effects and the feeling that it wasn't helping my MS. But, thru the grapevine, I heard that others were doing ok on it...I ended up spending a lot of time at other doctor's offices being treated for the side effects, so I figure that if one is sensitive to it, then it's almost a snowball effect and the whole shebang happens! haha Anyway, been on Tysabri for 4 months now and it's starting to be apparent that it's not touching the MS holes and all. I hope the other pill being approved is helpful for some as I'm not sure what's left after Tysabri. Good luck and stay vigilant if trying Gilenia. I hope it works for you.

Anonymous said...

Would just like to say all of these drugs are based on the immune system theory.
The immune system is not the problem in MS, the real issue is the lack of blood flow through our brains.
I have tried most of the drugs available for MS over the 13 years i've deen diagnosed and none of them have come close to the improvements i have seen from treating my CCSVI condition.
This is the key to my MS without a doubt and is benefiting people with all forms of MS not just the RR group.
I wish everyone all the best with what ever treatment they decide upon, it is after all an individual choice, goodluck everyone, i hope you find your key.:0)

briana said...

Anonymous-I'm not sold on the immune system theory either. I've tried several of the drugs over the last 19 yrs and they didn't do much for me. I am looking into CCSVI as they just opened a clinic in my area. I don't necessarily think that it is the the missing puzzle piece by itself, but given the other options right now, I'm more comfortable with angioplasty than the drugs, and I won't know what it might do for me unless I try it.
I'm glad it worked well for you and hope that I will benefit as well.