neuro appt today, DMD discussion

[doublevision1]

Well I saw my neuro today and after a lengthy discussion with both him and the nurse, the subject of UTI did not come up! There was so much else to cover, I completely forgot to ask and they apparently did too. Argh. Why didn't I write it down?

No 12 year old resident this time lol so it was nice to get to know my neuro better. We had a long discussion about changing treatment. We discussed the three orals available in Canada as well as Tysabri, He really doesn't like the idea of put ting me on Tysabri at this point in time. He doesn't think I'm in bad enough shape for it. ??? Four relapses in the six years I've been on Copaxone, plus several MRI changes in that time. But 'only' two new lesions since 2012. He said I'm "relatively stable." He reminded me none of the DMDs stop all new lesions. I feel like he's minimizing my relapse rate and MRI evidence. I think I could ask ten different docs and get ten different opinions. This is where I get most frustrated with the management of this disease. I'm considering rounding up my MRIs and clinical reports and shipping them off to Dr. S in Boston just to see where he would land on the Gilenya vs Tysabri question. Out of curiosity more than anything.

I asked my neuro, isn't the point to prevent me from getting that bad to begin with? He agreed but led me through a methodical decision process re: staying on Copaxone, switching to an oral, and Tysabri. The whole risk vs reward thing. He is concerned about PML (I told him I'm JCV neg), said there's a heightened risk after two years on the drug even if you're JCV neg.  Is this accurate? Anyway It sounds like they won't keep anyone on it after two years, though I suppose there are probably exceptions.

By the end of it, it sounded as though it was ultimately my choice, though he made his position very clear. So I'm armed with more info about Gilenya, Aubagio and Tecfidera and lab requisitions for the blood tests and EKG (for Gilenya) that are required as pre-screening. They said they're seeing good results from Gilenya and few complaints re: side effects which was reassuring as that was a major concern of mine. No one has had to stop due to cardiac or liver damage. Doesn't mean I won't have these problems but still, reassuring.

I talked to him about my current relapse and that one of the nurses said it could be a symptom of "detoxing" when I told her I'd cut out wheat, sugar, soda, etc 3-4 weeks prior. He looked very perplexed and said "She said that?  Really? Detoxing? Well I'm going to have to have a word with her."  I was reassured by this..... if he'd have agreed with her I would definitely be shopping for a new neuro.

We were talking for so long I was starting to wonder if he'd even examine me, but he eventually did. I felt it was a bit cursory but he seemed to cover the important stuff I guess. A technician took me for a few further tests: eye chart (did not do great); the long hallway brisk walk (did okay I think); and the pegboard (failed miserably: pegs flying out of my hands this way and that; so slow and clumsy; felt like I was trying to do the task with hockey gloves on. Right side almost as bad as left. Discouraging.)

So I think where this is all going is that I'll probably be starting Gilenya soon though I will look into the others as well. If it doesn't work out then I suppose Tysabri is still on the table. I need to pass all the pre-screening so will get on it next week. I leave in mid-June for Scotland for a week and agreed no changing meds till after I return. But that will allow time for the govt insurance processing and I should be ready to make the change by June month end  .... barring any unforeseen neg test results.

[candy158]

Hi to you, :)     I have been approved for Aubagio, and will start that after June 19 because I have another surgery scheduled.

Gilenya is harder on the body I was told, they did not want me to be on Tysabri either.  She was pushing the Aubagio , we talked about the side effects, and they won't be fun, but they SAY that they don't last to long , ..... So, that is my thing.

I just saw my Neuro on the 7 on May, which is pretty recent.   I failed the eye tests and hall walking, and nose to finger test too.  I have to have another round of eye tests at the hopsital, and see an Opthamologist too.  But, that can't happen till September.

Hope this helps, give me a PM if you want more info ok???

((HUGS))
Candy

[doublevision1]

Thanks All.

Unfortunately my neuro is not mistaken. When I said "they" won't keep anyone on Tysabri after two years, I meant my particular clinic. I've since heard from someone who was told this is a rule in my province. I have no idea how hard and fast this rule is or who even decided it? Something I'm going to look into as it's pretty ridiculous and not the case in other provinces.

One of my concerns about Gilenya is the that it causes flushing. I've had this problem for a couple of years now, no idea what's causing it. But I really don't need anything to make it worse. Sounds minor in the big scheme of things but it's pretty annoying and uncomfortable.

[kwarendorf]

Hiya DV - it sounds like, current relapse not withstanding you're doing pretty OK.

I know it's hard knowing that there is something 'stronger' out there, but having be slightly outside your reach. One thing your neuro mentioned  that I think bears clarifiction.

If you are JCV negative you cannot get PML, period. The risk increases if you convert to JCV+ after you start treatment with Tysabri. That's what happened to me. It was a moot point as Tysabri had stopped working anyway :-)

If you convert after starting Tysabri you can always switch then...

Kyle

[anon07072023]

With so many DMDs now to choose from, it would be hard to decide which one would be best. I'm glad that your appointment went pretty good, overall.
Have fun in Scotland. I neeed a vacation, too!

[immisceo]

Man, that sounds pretty frustrating, DV. At least you have some more information. I was all set to tell you to ditch this guy if he agreed with that nurse. Seriously? Registered nurses spout the "detox" fallacy?! I do hope he has a chat with her...

I hope you're able to enjoy Scotland, and that all the processing is finished by the time you get back.

[rendean]

Your neuro is mistaken about Tysabri. I just finished dose #34 and still test JC negative. I am tested every 3 months. The newest protocol while on Ty is an MRI every 6 months according to a neuro a Washington University who happened to catch changes on an MRI long before permanent damage was done. So, now my MRIs are scheduled for every 6 months instead of yearly/as needed.

The JC virus can lie  dormant in your bone marrow, I believe, and is activated by too much immune compression. Also, you can catch the virus at any time. I know fellow patients at my TOUCH center who have been on it for 6 years and my neuro said he has patient on it for 7 years.

Glad your  Neuro visit went well, all in all!

Have a great time in Scotland!!

Ren

[HVAC]

I would me more spooked of Aubagio than Tysabri. I guess it all depends on the Neurologist. They all have their favorite medications and ones they do not like. I do not get why Doctors would all shoot for no relapses. Gilenya sounds good. I wanted to Tecfidera but they won't let me because of the Cancer.

I hope you have fun in Scotland. I would love to go there just once.

Sorry the UTI did not come up can you talk to him about it when you start the drug? I always write what I need to talk about down.

Alex

[Lulu54]

Four relapses in five years? Yes, there are people who have a lot more, but come on, the goal is to find the right med that you have none. I'm concerned that he is misinformed about Tysabri.  Is is not mandatory that people stop after two years- there are a number of people here who have been on it longer, including me.  I continue to be JC negative and will stay on it until that would change.

gilenya seems to have very good efficacy and i have heard of only a few people who weren't able to take it.  Good luck with the next phase of testing.

Corrie - yes we can be exposed to the JC virus at anytime because it is fairly common. They test every six months but it can be done more often if the patient asks.  Good luck with the Tecfidera-  I hope the flushing quiets fast for you.

[Corriel]

Hi there! :-)

I am glad you had a good chat with your neuro, and hopefully you can mutually agree on a new drug. A bonus that he disagreed with that whacky comment about detox that the nurse gave you, sheesh, really.

I thought that JC could occur during Tysabri treatment and that is why they test every so often if you take it, but others who have used it can weigh in on that one. I haven't heard much about Gilenya so I can't provide thoughts on that one either. I just started Tecfidera, today is Day 5.  It was going well but the infamous flushing hit me today. I will try some preventative measures and hope it does not last.

I am glad your neuro is open to trying a different DMD. Mine says he won't consider switchung me to anything else unless I have 2-3 major relapses in a year. Other than that he considers me stable despite new symptoms. Like you, I have a different definition of what being stable means.

I hope your relapse gets better soon and that you have an awesome trip next month.

Corrie