Can you help me figure out Neuro's reasoning.

[daisy.girl]

I have read on here by several members, that they have not considered Tysabri or Gilenya because their MS is not that aggressive. What does that mean?

I was dx Jan 2010, MRI showed approximately 10 lesions, I had a real hard time accepting my dx....I really wasn't sure I had MS, so I refused a DMD. Then in Oct 2010, I had a new MRI that showed an additional 5 lesions. My Neuro said that we needed to get aggressive and he suggested Tysabri and/or Gilenya.

I have a lot of symptoms; pain, numbness, tingling, burning tongue, spasticity, loss of balance, urinary issues and visual issues, but....I am ambulatory.

Just wondering why my neuro would bypass the ABC-R's at this time?  I did start the Tysabri.....but I have been thinking a lot about this lately. It seems a lot of people with worse symptoms are on an ABC-R.

Any input would be greatly appreciated.

[daisy.girl]

thanks again for all your replies......I really do appreciate it!

Ren- My first infusion took four sticks, and I ended up having the entire infusion through a small butterfly needle. I did feel a little nausea, and the left side of my head hurt above and behind my eye, and sharp kinda pain....but it only lasted a few minutes, and once for a brief period of time, I had heart palpitations. But after I left and ate something, the nausea left, and other than being tired.....I felt fine. It has been 2 1/2 weeks, and other than my regular symptoms, and severe migraines, I do not have any side effects from the Tysabri.
Hope that helps!!

Sumandevii and Shermay-I wish there was a chart that showed the effectivness of each of the DMD. Do you all know the order of strength of these drugs?
I agree about waiting to see how Gilenya is in actual usage.

[shermay]

Hi,

I would say that it is due to the amount of lesions that you now have from your last MRI, to the first one that has made him pull out the stops.

I don't have major issues with needles, but I have been reading up on Gilenya - and the list of s/e 'appear' to be greater (or if not greater then different) than Tysabri.

I know with Tysabri, there are major issues as well, but at least you are in an infusion center when they do it.  Taking a pill at home, without fully knowing what could happen does worry me.

These pharma's do have a way of pushing things through, and that is something I am not happy with.  I would IMO wait for a while until Gilenya has been on the market for longer.

I agree with Ren, it does concern me too.  Tysabri is the strongest drug on the market at the moment - as for the ratios I'll have to dig around in my files to have a look.

When you next see your neuro, could you not ask to try a CRAB drug - just to see how it goes?  When's your next MRI due?

If you ask your Neuro up front and ask - he may well put you on a different treatment?

Debs

[Sumanadevii]

According to my neuro the first studies on Tysabri are not correct.  The rate is more like 40 to 45% more effective than the others.

[rendean]

I'm still tossing around my options.  So you said no issues from the Tysabri infusion? That sounds wonderful to me since my list of allergies is up to 7 or 8. Why was the Tysabri chosen over the others, if you don't mind sharing?

I almost but just almost, wish my neuro was firmer in his decisions. It took a lot of pushing to get his true feelings because with MS, ANYTHING can happen and after 30 + years in practice nothing in MS surprises him.  He gives options and info regarding the same and lets the patient make the ultimate decision.

I'm glad your first infusion went well! I'm  on monthly ketamine infusions for chronic pain so trying  another newbie drug does concern me. The ketamine has been wonderful, giving me at lest 3 weeks of tolerable pain out of 4.

Thanks for any input and I hope I helped with your question.  bottom line , my neuro sees it as the most aggressive drug thus far with good results.

Ren

[daisy.girl]

thanks guys...

lulu- I too thought that 5 lesions in 9 months may be his reasoning. I never refused the DMD because of the shots.....I just didn't really think I had MS. When I went back after the second MRI; my neuro said, there is no reason to doubt now.

Ren- our docs sound similar in thought process. I am glad to hear that your lesions have not increased. I think that is what has scared me the most. I figured I could no longer do nothing...just questioning now, if I should have tried one of the ABC-R's first. I really had very little reaction to my first Tysabri infusion; for that I am grateful.

Red- thanks for your opinion, I think you are right. I guess Tysabri just scares me a little....and after hearing others on here say they are not on Ty because their MS is not aggressive enough, just confused me.

[RedFlame]

I would go with your doctors judgement.  You could go into remission for years and it's much better than the opposite.  

Red

[rendean]

HI,
My neuro has suggested I go for the big guns to KEEP me ambulatory.  My lesion load has not changed in 5 years and I have very little inflammation to my exacerbations, hence the poor response I get to IVSM.

I also have many symptoms, most of the same ones you have. My neuro said Gilenya is 50% more effective than the CRAB drugs and Tysabri is 75% more effective than the CRAB drugs (Hope I remembered the ratios correctly!)

At any rate he wanted me to go on a more aggressive drug but  was willing to let me continue to use Copaxone even though I was collecting more symptoms that stayed after exacerbation.

Hope this helps,
Ren

[Lulu54]

Tysabri and Gilenya are the big guns - they are normally used only if a patient has not been successful with slowing the development of new lesions with the injectable drugs.  

That is a serious increase in lesions in less than a year, and I imagine he saw this pattern, knew you didn't want to do the shots, and perhaps thought he has to at least offer something.

When you see him next or go in for you infusion this is a fair quesiton to ask - see what he has to say.

good luck, Lulu