Tysabri fatigue

Common Questions and Answers about Tysabri fatigue

tysabri

Hello all Has anyone used Tysabri. I am now flushing the copaxone out for a month. Then start Tysabri its a intervenous therpy. My neuro says I am more progressive now. So many meds I can't keep track. I would appreciate any info or anvise.
My lesions were increasing and I still had the fatigue that went along with MS. Ive been on Tysabri for almost 4 years with no flare ups. For having MS, I feel great. I used to get monthly blood work to check for PML and would take 2 to 3 month "holidays", just so my body wouldn't be over exposed to the Tysabri. (It lasts in your system for up to 3 months). I recommend Tysabri to anyone that has MS. It beats daily self injections, and its only once a month.
I had a head ache and fatigue. But then I have fatigue anyway so that was not a huge issue. What I felt like is what I feel like after I get a flu vaccination.
I'v had 18 infusions and Tysabri is the only DMD I've used. Since starting Tysabri I've seen no appreciable worsening of my MS. If I can stay where I am now I'll be very happy.
I was changed to Tysabri and had my first infusion yesterday and everything went great, no reactions or side effects. However, I could swear I have more energy today. I have not been shopping for months and today I was able to go shopping. Is this my imagination? Just a rare good day? Or could the med already be having an effect on my fatigue? FYI, all other symptoms are pretty much the same.
Hi Sarah - I think more blood testing is better than less - as long as you get copies of everything and staying in the loop. I was complaining about extreme fatigue at my last Tysabri infustion. They did a urinalysis and bloodwork. My neuro-dept said to go ahead and do the infusion. (My dr.was not on duty that day) A MONTH later I had an appt w/ my Dr. "You did know you had a urinary tract infection, didn't you?" NNOOOO I didn't!!!!!
The past few days my fatigue has been a lot more pronounced. It feels like a weight pushing down on me. I'm not otherwise ill and have had no changes in meds. I don't feel I'm having another relapse. Even worse than the sensation of heaviness is the feeling of being drunk, that sort of spaced out, off balance, unsteady feeling in my head and in my body. It's a really disconcerting feeling. I'm only somewhat physically comfortable when I'm lying down.
For me, after 28 doses, some infusions make me more tired than others. For some, I am actually fine without the fatigue! Love those times but the norm is fatigue that slowly wanes and my energy levels return. Hope things go smoothly for you!
I'm in pretty much the exact same condition I was when I started Tysabri. Maybe just a tad weaker. My biggest issues - weakness, fatigue, spasticity, spams. All 4 extremities. The good news: no new flairs (that I know of) in the almost year that I've taken it. I'll take the minor side effects of this over the interferons any day!
while on Tysabri. Any news would be appreciated. Also, does anyone report increased fatigue while on Tecfidera? I am over all of the flushing and gastro upset. Just very fatigued - way more than ever before. I am taking Nuvigil and could not make it through the day without it! Be well and try to stay positive everyone.
) I know I had said I would do monthly updates after I started the Tysabri, and I think I have only done the first 2, so I apologize for that. The simple truth is that I have been having a pretty rough go of it for a long time now… but if any of you are considering Tysabri, or just interested in it or whatever, PLEASE remember that this is only MY experience, and everyone else’s is different. If anyone has any questions or wants to talk to me about it more in depth, feel free to PM me.
Just curious if anyone might be willing to offer any feedback. On Tysabri since November 2011 (9mos). I honestly feel like it is not really helping/doing anything. I feel as if I am on a very slow yet steady decline. Though I have had MS since May2006 I feel like I really "got MS" Jan 2011 (optic neuritis in Jan11 , flare ups, balance, feel like an older computer at times, left leg getting worse, a lot slower at everything) Being JC virus positive...why wait and take the risk...
Anyone else feel run down and just crappy after Tysabri infusions?
Hi all- I am just writing to let everyone know that I am about to start tysabri infusions in late June. My neurologist thought that based on the "large lesion load" in my t-spine that Rebif was simply not working for me. Because I am young, and he wants to "give me the best chance" for quality of life he thought tysabri is the best choice for me (despite the risky side effects).
(and remember, if you all are getting tired of this, just let me know - I don't want to be boring everyone with my Tysabri stuff, lol.) This time, they ran the infusion in alot faster - it must have only been 30 or 40 minutes. I wasn't really paying attention, cause I didn't expect it. I just looked up and notice I wasn't dripping anymore, and I just assumed I had a kink in the line, lol. (The catheter that runs into your vein is tiny and very flexible - I had a little kink last time.
I know it usually takes 2 - 4 treatments to notice much in the way of change, so I don't expect much yet at this point. Been having headaches more than usual, but who knows if it's from the Tysabri or just life in general, lol. Most of my symptoms haven't changed much yet. The bugs aren't crawling up and down my back as often, so that's nice. Not so much buzzing in my pelvis, either. Still having transient awkwardness in my fingers, and muscles twitching in my right arm and left leg.
Hey guys... :) Just checking in. Well, I think the Tysabri is definitely helping some. Last week, I was starting to feel a little more "normal", for lack of a better word. A little more like the old me. The people at work even noticed it. I wanted to interact with people more...had a little more zip than my usual zombie self. By last Wed. or so, the hip pain had really backed off alot, and it hasn't bothered me much at all for several days now.
Here is what my neuro had to say about that, as many of you told me, many people who are JC+ take Tysabri. He explained that the TOUCH program allows them to monitor patients making it much safer. He did however tell me that I would be allowed to stay on Tysabri for only a year at best. Then he told me that although people feel great on it, as soon as they stop taking it they "crash and burn", meaning they feel terrible and begin having many relapses. Well that sure turned me off!
I was on tysabri for 9 months till my liver decided it didnt like it anymore but I loved the drug went from using a cane to nothing. I just started gilenya yesterday so jury still out on that. Its been 7 months since being off therapy and feel like crap the fatigue is overwhelming and my balance is bad dragging foot again so should be using cane again just not mentally ready for it. if your jc neg I would go for the tysabri as long as insurance covers it 1 hr a month and done so easy.
Hi BL- Welcome to Our Merry Band :-) I was diagnosed 2 years ago, at age 51, with SPMS. My first, and up until a week ago my only, DMD was Tysabri. When I was diagnosed we were able to connect seemingly random events over the previous 20 years. What seemed completely unrelated was related. All were symptoms of MS. Because I'd had MS for so long my doc thought I was out of reach of the injectables. At the time the orals were just starting to come on the market.
Other treatments prior to Tysabri? How long were you on them? How long have you been on Tysabri? Do you feel it is helping? Have you had any side effects? If you were on Tysabri, did you have to stop the treatment for any reason? If so, why? If you stopped treatment, did you have any problems with rebound symptoms? Have you had your JC Virus status checked? If so, did the results affect your treatment decision?
I had problems for about 6 months and neuro and I worked thru each of them and my last year have not had any problems with side effects. Your fatigue could be caused by MS Tysabri does not do away with the little nuisance problems, only help protect against future flares........sometimes its common to have flares the first year til it really kicks in........I can tell now that my flares are slowing down............
-) FIrst I would like to say My Cognity is acting up so I am having a hard time finding the correct word to use so bare with me if a word does not make sense So I have Major Fatigue, Last month my Doc gave me Amadine, it worked great for about two weeks then I went right back to Major Fatique issues. Wednesday Doc gave me a different drug to try. Nuvigil. I got samples of 250 mg and cut it in half. Took on Thursday Morning and I was so Spastic!
HI Rita, My friend on Tysabri that you spoke to always got frequent UTI's while on Tysabri, She went off the Tysabri six weeks ago since she was getting alot of new lesions on her spine and wanted to try LDN. Now that she is off the Tysabri, she is having pain for the first time with MS. She is not getting very good effects from the LDN and may end up back on Tysabri. I'll catch up with you later!!
Yes, I love Tysabri. Even though I still fatigue after effort and the weakness returns, each day te strength returns and there is a new possibility of getting more than a nap accomplished. I hope that answers all you inquiring minds.
Do you normally start feeling weaker as it gets close to the time for your Tysabri? If so, that may be playing a role. I know a teacher with MS who swears by Tysabri - it is making her feel much stronger. Get some rest - you deserve it!
I usually have this amazing wave of fatigue around 2 pm, and my movement slows waaaayyy down, and my thinking gets really foggy- I'm a mess, and I have no choice but to rest. I perk up again around 5 pm. Now it happens between 9-11 in the morning, too :( As DH said, "that doesn't leave much of the day, now, does it". I've tried Nuvigil. Yeah, it keeps me awake, but I'm still fatigued, and my brain is still foggy. I'm still doing Acetyl L-Carnitine.
I have MS, I am currently having monthly infusions of Tysabri, and take 60 mg of Cymbalta a day, is this treatment of HcG injections SAFE for someone like me?
On the right side panel you can read the summary comments that explain the data presented. I was just reading P07.081 Nataluzimab reduces fatigue (Tysabri - TYNERGY study).
I have also heard of the rebound effect after coming of tysabri. So far ive noticed my fatigue is worse and my balance is off again but not like it was. Before tysabri I had a cane and walker now I use nothing and would like to keep it that way. I started doinf volunteer work for hospice and love it. I would hate to go back to what I was before tysabri. I am seeing ms specialist dec 31st to see what my options are for dmd. I wont go back to shots and not happy with side effect profile from tec.
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