Multiple Sclerosis (MS) Support Group

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AusSue 10/05/2013

Hi I am sure this has been discussed but I may have missed it. I have been reading up on different ms treatments.
I am on Gilenya at the moment but the neurologist I saw last (mine was on holidays & it was an emergency due to bad relapse), has said that Gilenya is obviously not strong enough as I have been fighting this relapse since mid June. He is suggesting that I go on Tysabri as soon as I get over this relapse.

I am worried about this idea as I have shocking veins for the tysabri. It was hard enough to do the 3 day methyl/prednisolone drip, had to leave 1 bung in overnight which was very uncomfortable. My veins basically collapse when a needle is put in. The nurse/practitioner that does the tysabri said if I went on that I would probably need a permanent peg(?) put in. Well doubt that will work as had 2 done previously in hospital & 1st one lasted about 3 days then then 2nd one only overnight till it blew up all around & that had to be removed too.

I don't know much about the other option, think it has only been approved recently here.
I have read about so many side effects of both that I am totally confused & would like to hear people's experience both good & bad please.

lchoppel 10/05/2013

I've been on Tysabri and am now on Tefidera. It is a shame about your veins. Sounds like Tysabri might not be for you since it is interveneously given. I loved Tysabri but had to stop for a couple of different reasons. Then, I waited a year before I started Tefidera. So far, (6 months into treatment) I'm pleased. No real side affects to speak of. Nothing untolerable. Should you have any questions, please pm me.

ChrissyH 10/05/2013

Both r great options. Ur veins may not b the best, but a skilled nurse can get the IV in. Before Tysabri have their blood test to see if u carry the JC Virus. I've been on both & both r great. Tysabri is much stronger than Tecfidera.

Best of luck on ur choice!

ezone 10/06/2013

Look under the "treatments" posts. But also here is a link I found:

http://www.thisisms.com/forum/tecfidera-bg-12-dimethyl-fumarate-f52/topic22221-75.html

mjideas 10/06/2013

Sue, I have not had either because they came out too late for me. I also did not have a Dr. rooting for me, as hard as I tried. If you are able to get the vein problem worked out - my recommendation would be Tysabri but you must have the JC virus test and be sure you test negative. Tecfidera would be the second option.

Do whatever you can do to delay disability.

Melanie

deleted_user 10/06/2013

hi, i've been on tysabri for over 1 year. omar was my nurse, and he got me right away. but now omar isnt working at the same clinic,( my veins are very little and it takes me quite a while to get started). it takes sometimes 3 or 4 times to get a good vein. but, i havent had a relapse since i started. and you only go once a month...thats a bonus!! the nurses draw blood every month, and after a while, you only need to go for blood every six mths. i was use to copaxone and rebif...needles every single day for 1 yr., augh! and rebif 3x a week. now its just one a month. hope this helps. i know it can be hard at first, but it has been the best year of my life. :)

AusSue 10/07/2013

Thanks all for replies, can't get cannabis legally here. LOL. Other parts good.

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