The Before and After of a Tysabri Infusion

By Devin Garlit

4 min read

During my life with multiple sclerosis, I have tried numerous treatments. From Avonex, to Copaxone, to Avonex and Copaxone at the same time, and even just diet and exercise. However, no treatment has been quite the lifesaver that Tysabri has been. That said, my experience with Tysabri does come with some interesting experiences, notably right before and right after my infusion. I thought it’d be nice to talk about those experiences and see how many other people also encounter them.

Treatment is an individual journey

As I said, I’ve tried a lot in my 16+ years with the disease. Treatments would seem like they worked for a while, and then suddenly, they didn’t. Everyone’s experience with MS treatments is different, and I very much think it is an individual journey. So while Tysabri seems to be doing great things for me, that doesn’t necessarily mean it’s going to be great for you. I can’t stress enough that finding what works for you is an individual process that will involve trying different medications to find what works for you. For me, Tysabri was a game-changer because it has, for the moment (fingers crossed, knock on wood, etc.), stopped or dramatically slowed my transition into secondary-progressive MS.

How is Tysabri administered?

First, a little background on Tysabri if you aren’t familiar with it. It’s administered once a month via IV infusion. I head on over to my local infusion clinic located in a hospital and receive it over the course of an hour. Now, when many people think of Tysabri, they think of the increased risk of a rare brain infection known as PML (progressive multifocal leukoencephalopathy). This untreatable infection can be fatal. It is certainly a risk and something everyone who takes Tysabri must think about.¹

PML and the JC virus

The chances of getting PML increase if you’ve been exposed to the John Cunningham (JC) virus (which is, for the most part, symptomless and is actually very common in the general population). Tysabri patients can be monitored via bloodwork to see if we’ve contracted the JC virus. The risk of PML is yet another individual journey for MSers to consider. For some, it scares them away from Tysabri completely. For others, they get such a benefit from the drug that even if they are JC positive, they’ll continue to get Tysabri.^1,2

Before and after my Tysabri infusion

Now, what I really want to talk about is what happens to me before and after my infusion.

Symptoms slightly increase

The days, nearly the whole week, leading up to my infusion are very rough. A lot of my regular symptoms are slightly increased: intense burning pain in my legs, leg weakness, spasms, very bad fatigue, etc.

Mood changes, irritability, and depression

The most troubling part, though, is that my wife and I notice that I get a significant mood change during this time. I become increasingly depressed and irritable during this time. I have thoughts that I normally don’t have. I really don’t even feel or act like myself during these few days when I am due for an infusion. If for some reason, I have to push my infusion to a later date, the severity of these problems increases even more.

Extremely dark days before the infusion

Those days when it gets close to an infusion are extremely dark ones for me, to the point that, increased chance of PML or not, I wish I could get Tysabri every three weeks instead of four. I have an appointment to discuss this with my neurology team but I wanted to put it out there and see how many other folks have similar issues? I know that I’m not alone because a handful of other Tysabri patients have mentioned it to me, but I’m very interested to see how widespread it is.

The week after my infusion, I feel great

Now, as bad as those few days before my infusion seem, the exact opposite is true for the week or so after. Normally, I’m knocked out on the day of the infusion. I pretty much go right to bed for the night as soon as I get home, and it’s one of the few nights I don’t battle painsomnia.

I feel the best I ever feel after a day or two

A day or two after that, I feel the best I ever feel. My head becomes clear, I remember more, I can walk and stand longer, too. I still have issues, but overall I feel considerably better. That’ll last nearly a week at times (sometimes longer, sometimes shorter). It really is an incredible time for me, and I wish it lasted longer. Again, I know others who experience this, but I wonder if it’s more widespread?

What's your Tysabri experience?

Overall, Tysabri has been a lifesaver for me. Without it, I would have already progressed a lot more than I have. It hasn’t reversed any of my issues, but it has certainly seemed to stop the disease in its tracks (at least temporarily). But as I mentioned before, we are all snowflakes with this disease, we are all different. I really would love to hear from others though, what are your experiences with Tysabri? Particularly leading up to and after an infusion - let’s hear it!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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beck Member
I have very similar issues. Sometimes I am wiped out the day of infusion and the next day. Last infusion day I tried to get some housework done after and paid for it. I couldn't move literally by the end of the day.
1. tonyhasms Member
 Good luck on your Tysabri journey. For me it was a game changer. I partipated in the phase III trials way back in 2004/2005. Subsequently I continued on Tysabri infusions once it received FDA approval until the initial PML deaths forced Biogen to suspend treatments for approximately a year. Tysabri stopped my desease cold and I even saw some reversal in my symptoms. By the time that Tysabri was available again, my desease had progressed to the point where the medication had any effect on me. Of the many meds and therapies my neuro has had me try before and since, none had a fraction of the impact that Tysabri did. All the best to you.
2. tonyhasms Member
 Good luck on your Tysabri journey. For me it was a game changer. I participated in the phase III trials way back in 2004/2005. Subsequently I continued on Tysabri infusions once it received FDA approval until the initial PML deaths forced Biogen to suspend treatments for approximately a year. Tysabri stopped my desease cold and I even saw some reversal in my symptoms. By the time that Tysabri was available again, my desease had progressed to the point where the medication had no effect on me. Of the many meds and therapies my neuro has had me try before and since, none had a fraction of the impact that Tysabri did. All the best to you.
uyfe91 Member
Yes, I have similar experiences. I lose steam the week before my infusion. I sleep like a hibernating bear the afternoon & evening of my infusion. I usually have 2 days of nerve, joint & muscle discomfort... then it's uphill from there.
1. Devin Garlit Moderator
 Thank you for reading and sharing your experience, I appreciate it!
2. Devin Garlit Moderator
 Thank you for reading and sharing your experience, I appreciate it!
Member
I experience similar effects. I'm very tired after the infusion for about a day or two. About one week before the infusion extreme fatigue, more pain, and mood changes happen. I've been on Tysabri for close to a year now. Prior to that I was on Rebif for four years. I'm very thankfully for making this switch.
1. Devin Garlit Moderator
 Thank you ursula_s! Seems like a lot of us experience this! Like you, I am still very thankful for switching to Tysabri! Thank you for reading!
krittykat60 Member
Hi, I have been in Tysabri since August of 2013. I keep track of them on my calendar in my phone. My next infusion is Nov 10th and it will be my 41st infusion. The very first infusion kicked my a** . I was not expecting that and I was out of commission literally for 4 days. I could not function at all due to the fatigue. I called the infusion center and my infusion nurse told me I was unfortunately one of those who had what they call an allergic reaction. She told me the next infusion to take an antihistamine such as Benadryl the night before and the morning of. Because I work before I go for my infusions I opted to take a generic Claritin or something similar due to Benadryl causes the drowsy effect and then I wouldn't be able to drive home. She also suggested I take 2-3 Advil prior to the infusion and again later that same day. I find that if I follow that routine for the most part I feel pretty good after my infusion but have learned not to overdue it. Even if I feel great I go home and relax. The Tysabri gives me a boost for about a week and sometimes it will not allow me to sleep the first 1-5 nights. I guess I have too much of a lift those first few days. But soon after the 2nd week the fatigue returns and I too start to feel more fatigued and the pain in my legs, feet and hands gradually worsen. I agree that last week is the hardest to get through and because I'm crashing it makes me twice as moody. One other thing I did discover is if I feel like crap the day of, I feel like crap all month. I started experimenting a little and I found if I take the generic Claritin 4-5 days prior to my infusion and then add the Advil about an hour before my infusion I have a much better reaction and I feel better longer. I was on Copaxone for five years and I was having MS leaks. My neurologist discussed the options with me at first I was drawn toward the pill form that was just about to be FDA approved (Teclifedera). After I read the side effects and the possible damage to my organs I opted for the Tysabri. I'm satisfied with Tysabri and it has stopped the progression although I had one new lesion about a year ago but I was under a lot of stress with work, family, loss of a sister, a very close friend and recently my Dad. He was diagnosed with colon cancer 2 months after my sister and friend passed away. He lost his battle with the cancer a couple months ago but it was very difficult to watch him go through so much pain for almost 3 years. I was very down and pretty much depressed for the past year but I'm healing now and just trying to take one day at a time. Without Tysabri I would not be able to continue working full time and I can spend more quality time with my family and grandkids. Without it I would literally be homebound and miserable. Hang in there it may get better for you. I seriously believe it's the best treatment thus far. I hope my story helps you. Try the Claritin or other OTC allergy medication for about a week prior to your infusion and see if that makes a difference at all. Best of luck.
1. Devin Garlit Moderator
 Thanks Kritty! I have a friend on Tysabri who also has to use Benadryl the day of. I'll point her here to look at your use of Claritin! I am lucky and don't seem to have those same reactions, although I do sleep most of the day when I get the infusion. It also seems that rough week prior to the infusion is common for a lot of us! Thanks so much for sharing your story!
2. helton11 Member
 Kritty, My heart breaks for you and your losses. I have MS and also on Tysabri. After ready all these posts, I realize some of my problems. I just thought it was regular with MS. Now I know I am not going crazy felling the way I do w/ Tysabri. My DR is going to switch me in April to Alemtuzumab then- she stated it should be approved around December. I will be thinking of you during the Holiday season. I know how hard it is since I have lost people so close to me. Thank you for sharing. Rita
krittykat60 Member
You're welcome. It's good to know it's a normal reaction and I'm not alone. I'm on my downward spiral week now. Next Thursday can't come soon enough. 🙁 The Claritin seems to make a big difference for me. Also I try to take really good care of myself the last week as I mentioned B/4 if I feel like crap when I have my infusion I feel that way all month. Oct infusion was a good one. I feel it had a lot to do with the fact that I was was off work for 12 days before my infusion. I felt so much better just not having to work and being stressed out. After my infusion I had a lot of energy. I was able to help my son and daughter in law paint and clean the home they bought. Normally I cannot do all of that the first couple days after being infused. I'm hoping this month will be another good one. Especially with the Holidays lurking around the corner, it can be very an overwhelming time.
1. Devin Garlit Moderator
 I have my infusion next week so I'm going through that rough time right now too! Oh yea, I hear you about the holidays, always a tough time for me too!
krittykat60 Member
Good afternoon Devin. I just got home from a rough day at work. No breaks and I ate my lunch at my desk while working. I am exhausted, I just keep thinking how nice the weather forecast is for this weekend. It's motivating me to keep pushing on. We're tough we'll get through it. 5 1/2 more days for me. I hope you have a great weekend! ☀️☀️
1. Devin Garlit Moderator
 Thank you Kritty! Hang in there, hope the rest of your week goes well!
nadazmd Member
I also say that my battery needs recharged when there are 3-7 days to my next Tysabri natalizumab infusion. And I crash hard onto my couch after returning home from the infusion. But it gets more manageable as the day goes on.
1. Devin Garlit Moderator
 Thank you nadazmd! That same day after the infusion, I absolutely am crashing on my couch too!
spratt Member
Ooh, I could have written this - almost! I don't get the depression before, but my symptoms are certainly worse during that week. The day of the infusion I also come home and go right to bed. Usually I'm good the next day. I've only had four infusions and will have my fifth tomorrow. It has been a lifesaver for me! However...I had the first two with no problems, but the third I had a bit of reaction. The fourth I had a lot of reaction and it was a bit frightening. Because I feel so much better on Tysabri, I certainly want to continue. We will see what happens tomorrow. The doctor said they will give an injection of Benedryl and steroid, and I'm to take Tylenol an hour before I get there. Hope it works! Thanks for sharing your story.
1. DonnaFA Member
 Hi Spratt, thanks for sharing your thoughts and experience. We're glad to hear that you enjoyed the article. Let us know how it goes at the doctor. We're wishing you luck! -All Best, Donna (MultipleSclerosis.net team)
nadazmd Member
I've been taking Tysabri for over 5years and have now reached a point that I am entering 2ndary Progressive MS. Wherever we are with this bug-gar of a disease, WE MUST NEVER LOSE HOPE!
1. Devin Garlit Moderator
 So true, we can never lose hope! New advances are happening all the time!
uyfe91 Member
Hi Gavin. I love reading your articles. This time, I forgot that I'd read it & that I had posted a comment. When I realized this, I was overwhelmed and not sure if I was going to laugh or cry. Instead, I chose to post to you. It brings to mind (pun intended) just how many symptoms we MSers may have & how they affect every fiber of our bodies, at any given moment. I wouldn't wish this disease on anyone permanently. However, I'd like non-MSers to walk in our shoes for just one day. That experience would provide an education like no other and clear up many MS misunderstandings. P.S. I'm grateful for my Tysabri infusions. They've helped me go from being bedridden to using a rollator, quad cane, cane and without assistance during each month. I'm blessed for what I can do each day. Please keep writing!
1. Devin Garlit Moderator
 Thanks so much pmdpeace! I really appreciate you reading and taking the time to comment!!!
fk6byr Member
My symptoms are also increased the week leading up to my infusion; I can tell when it's getting close to infusion time without looking at my calendar. The infusion also tuckers me out for the remainder of the day, and sometimes my fatigue lasts a few days after the infusion. I've had 20 infusions total and it seems like my "before & after" symptoms are lessening...but that could just be a phase!
1. fk6byr Member
 That being said, Tysabri is the first treatment I have tried and I love it! I was diagnosed a year and a half ago and went straight to Tysabri due to the number of lesions I had. Since being on Tysabri, I haven't had any new lesions and the one brain lesion that I had disappeared. Some days I feel so great I forget I have MS...then again, that could be the MS 😀
2. Devin Garlit Moderator
 Thanks MSer! The before and after symptoms have definitely lessened for me as time has gone on too. I always tell people to stick with it when they start because I know it can be a little discouraging. I too have had great success so far on tysabri. No matter what the before and after is like, it is much, much better than the alternative!
chalknpens Member
For four long years I injected Copaxone every night despite denying my diagnosis of RRMS. I was in my late fifties when diagnosed. I did the drug because I believed it would keep me in my job. Truth be told, I hated the injections ... they hurt for about an hour afterward each night ... a dull aching, burning hurt. I was angry with myself for needing to inject something I didn't trust and didn't want. I felt I was being punished every night for something I hadn't done. And I wondered why I had to do the punishing myself. Not much of a 'treatment.' No one was treating me. And I envied those who had real treatments. There is a world of difference between being handed a prescription and telephone number for painful nightly injections to be self administered ~ and a once a month infusion administered by professional medical personnel who show empathy, care and attention to their patient. After I retired due to cognitive losses and depression following four years of self-administered punishment, I switched doctors, told my new neurologist that I resented and would discontinue the 'treatments' and go on without DMDs as I'd lost my career anyway. I immediately felt better. I now, in my late sixties, own my own quilt shop and am living happily ever after with my ever-patient husband who has seen me through the worst years. I still deny MS, and live happily in the world of denial. If I ever had a chance to switch from Copaxone to a real 'treatment' I might have continued. But it wasn't in the cards for me.
1. DonnaFA Member
 Hi chalknpens, thanks for sharing your thoughts with us. I'm sorry to hear that you had such a negative experience, but I am glad that you have found a measure of peace. We're sending good wishes to you and your wonderful husband. We're glad that you're here! -All Best, Donna (MultipleSclerosis.net team)
stacykelsey Member
Hi, I live in Idaho, was diagnosed in Jan. of 2016. I was put on Tysabri knowing I have the JC virus. But every 30 days I was hit harder and harder with relapses... We found out I was Allergic to Gilenya and I am told Tysabri was next. I find before I do have the moodiness of depression and cry more than I normally would over having something I wouldn't wish on ANYONE... I also feel drained. My symptoms start to come back. Then the day of I find myself very tired. I normally nap as I get the infusion and then have to have someone drive the 40 miles home cause I can not stay focused or awake to do the driving myself. Then I go to sleep when I get home and usually stay in and out for a day or two. I was wondering if you were able to drive yourself to get your infusion? I do have to say I was in a relapse and allergic reaction when I was put on Tysabri and I have noticed I do not have anymore "new" symptoms... But as the meds come closer to time to get them, my walking is affected again, my thinking gets foggy, talking and having a "normal" conversation takes everything I have to focus on and fatigue has became a daily thing about 3 times a day. I am happy with Tysabri. I just wonder if I wouldn't have been in a relapse if it would have worked better for me. But I am glad you are doing well! Thank you for sharing...
1. Devin Garlit Moderator
 Hi StacyKelsey! I already was in a position where I wasn't supposed to drive when I started tysarbi, however, even if I was able to, I doubt I'd have been able to after an infusion. Many people do but many, like myself, are too wiped out afterwards to really function. As for relapses, I think with any disease modifying drug, it takes some time to really be in the system and have an effect. I'd look at how your relapses are after a year and see if you've seen a difference, though I would definitely speak with your doctor about it. Thanks so much for reading and sharing your story!
2. motoenth Member
 Only reason I'm commenting is hoping to make you feel better. During your first year of Tysabri, the odds of PML for JC Positive folks like us is about 1 in 10,000. I started on Tysabri and was on it for just over 3 years. About a year ago, they developed a test to measure your JC virus antibodies level. Instead of binary results, it's along a scale. This allows your doctor to more accurately provide PML possibilities (probabilities?) with you so that you can make an informed decision and do what's best for you.
ethelp Member
Funny your article appeared right after I had the same talk with my neurologist. I asked if there was anything stronger that would make me feel better like I am the 2 weeks after my Tysabri infusion. I even asked if I could have 1/2 a dose on the 1st of the month and the other 1/2 dose on the 15th of the month. All ideas that I had was a "no" due to the FDA. I even asked if I could supplement the tysabri with copaxone to make it last longer. Once again "no".
1. Devin Garlit Moderator
 I often think that to myself, is there any way I could get it sooner or more spread out! I know it's not approved but I'd love to hear that someone somewhere is at least trialing that. Or perhaps they already have! Something I must look into! Thanks you for reading and sharing your thoughts!
sally03 Member
I just read your article. The day after the infusion I am in bed. Part is how long it takes. A week before I start winding down. The analogy I have used, my tank is almost empty. I am divorce since my diagnosis. My ex was a para medic. Could not or should say, would not deal with it. There are some issues but we do talk. I tell people don't be defined by your disability be defined by your ABILITIES. Tysabri has been a great help. Was on Copaxone. Diagnosed in 2008. (my 40th birthday present)
1. Devin Garlit Moderator
 Thanks Sally03 for reading and sharing a little about your life. I'm always curious to hear about other's journey with this disease. Like you, I once took copaxone too.
christiem022 Member
I came across your article - and it really struck a chord with me. I literally could have written this! What you describe in here is exactly how I feel on Tysabri. I have been on Tysabri for about 2 years now (only Diagnosed for 3 + years) It has been a true lifesaver for me - I am able to enjoy almost everything I was able to enjoy previously, have had zero relapse of symptoms while on Tysabri. The only downfall is when the holidays mess up my schedule. I still try to be in denial of the fact I have MS but weeks like this I am quickly reminded.
1. Devin Garlit Moderator
 Thanks ChristieMO22! I am so, so glad to hear you are doing well with it! I do think if it had been available when I was first diagnosed, my life would be different! Thanks so much for reading and sharing your experience, it's always very appreciated!
booker Member
Wow. Thanks Devin for your post. I'm not much for sharing online but after finding your story and the comments from all those who shared their experiences, I owed adding mine. I stumbled on this piece from a search to see if others shared my pre tysabri worn out, irritability, that like you, my wife can also attest to. I've been on Tysabri for about 5 years (following avonex and copaxone). The pre infusion fatigue started about 1.5 years ago, slowly building from a tired out day before infusing to where I'm at now, a crunching worn out feeling from 3-4 days before to the day after. I also tried getting adjustments to the dosage or time between infusions, but no dice. As you noted, the protocol is set in stone, at least for now. Fortunately, being in academics comes with a flexible schedule and summers off. No way I could manage 9-5 (not that I could before MS either...).
1. Devin Garlit Moderator
 Thank you booker! I appreciate you adding your experience to the mix! I know a bunch of us really thought it was just us, but seeing all of these comments definitely shows a trend. Also shows how helpful Tysabri has been for many of us. Thanks so much!
kk6215 Member
My fatigue generally feels worse at least a week before my infusion. My Doc has tried to move my schedule from every 4 weeks to a 5 week schedule but I felt like crap so we ended up moving it back to every 4 weeks. I’ve been on Tysabri for 5 years and I love it. The only issue I have is that the veins in my arms hurt and feel sensitive because of the monthly infusions for so long. I feel tired and winded after my infusions but I think its from the low blood pressure it gives me. I have an hour long commute home but I either take the train or the express bus. I try to close my eyes during the ride cause my head usually hurts. When I get home, I go right to bed unless I have to cook dinner for my kids when my husband has to work late. The next morning I wake up at 5 and start my day for work as usual. It’s not easy but I am so thankful to have this medicine cause without it, I’m not sure if I could do all that I do.
1. Devin Garlit Moderator
 Thank you for sharing kk6215! Your story sounds very similar to many people I talk to, I hope the issue with your veins eases somehow!
leigh Member
Oh YES! About 4-5 days before I'm due my next Tysabri Infusion is difficult. I'm extremely fatigued. So much that I don't want to even talk. It's nice to know that I'm not the only one with that issue. Getting it every 3 weeks sounds good and I'll talk to my Dr about it(thanks for the idea)!
kmccat Member
I concur. First, I totally recommend trying Provigil for fatigue. I have been on Tysabri fore 1.5 years and I'm a fan. It has at least slowed my little beast down. My MS is "rapidly progressive" and I still have a few flare ups a year. My doctor checks my JC virus level nearly every month, when I get my infusion. Luckily I am still negative . I wear down the week before and my symptoms increase in severity. So far, I don't become extra fatigued or too tired to drive myself home after. Later in the evening the fatigue sets in and I ache and wake up with gastrointestinal symptoms in the middle of the night. The next 3-4 days I will feel run down with tiredness and fatigue. I typically feel better for roughly 1-2 weeks. I was only diagnosed 3 yrs ago, but had ms for much longer. Before and just ignored the symptoms because I had so much going on in life. Then it hit me like a freight train. I was put on Gilenya for about 1.5 yrs, which did not work for me at all. I'll note that it seems to work for others. At first I had a crooked doctor who wouldn't take me off of it, despite my many complaints. (Classic Novartis kick backs, Cleveland Clinic Mellon Center, Calling you out!). I had huge cystic acne from my bellybutton to my knees all the time, rashes with nerve pain, my cognition was terrible, I constantly tremored, felt nauseated, threw up daily, bad headaches constantly. I was catching every virus that went around, making me losing my vision again for 3 weeks. (Steriods and I arent friends either). I was blessed with vertigo for two weeks straight, and now, on and off daily) I had so many bad flare ups and a lot of progression in that time span. I used to dream about crying poison bc I knew it was so bad for me. It ruined my life. I wish I had changed neurologists as soon as I had concerns, but it is so terrible of them to prey on newly diagnosed patients.
bita Member
Hi Devin ...i get so glad as i read ur story,cause its very famillier with mine!i actually agree to just shorten the interval between drug infusion ...i think we should do something coz there are some new paper that working on long interval of drug infusion to maintain responsiveness ...and we should let them kniw that it maybe not true!
1. davillain Member
 I'm sure big pharma would love for us to take the infusions at closer intervals too 😛 As it stands, if I decide to take the drug, I would opt for longer intervals (as the thought of death-or-disability-by-PML scares the bajeezus out of me), but who knows where I will stand on that trade-off in a few years time. None of our options sound all that compelling to me.
2. davillain Member
 A reason why they are experimenting with extending the intervals is because they would like to reduce the incidences of PML, which at about 2 years of taking this drug the risk shoots up between .5 & 2% and gradually increases over time. By about 6 years the odds of getting PML are between 5% and 10%, and you end up seeing a lot of people stop using it long before this period for fear of getting it. They suspect that if these infusions are spread out more (greater than 4 week intervals) it might strike a balance where your body keeps JCV in check (as it normally would), and still confers the benefits against MS. I’m considering starting this drug soon, and have been reading about it. I'm sure big pharma would love for us to take the infusions at closer intervals too 😛 As it stands, if I decide to take the drug, I would opt for longer intervals (as the thought of death-or-disability-by-PML scares the bajeezus out of me), but who knows where I will stand on that trade-off in a few years time. None of our options sound all that compelling to me.
esal28 Member
Hi Devin! Your stour made me feel so much better! I have EXACTLY the same issues you have! I’ve been on Tysabry for almost 6 years now because it’s the one drug that’s worked best for me. I do wish I could get it every 3 weeks because I also feel like I run out of fuel by then, everything gets exacerbated and I get pretty moody as well:/. Thank you for sharing your story! Good luck with everything😀
1. Devin Garlit Moderator
 Thanks esly! It definitely seems to be a common occurrence, especially among those of us who have been on it for a while!
momkale Member
I’m so glad I read your story, I feel horrible the week before my infusion with Tysabri, I didn’t for a long time, I think I’ve been on it now for about 6-7 years, but the last year the week before I feel like a truck has hit me, and a unrelenting headache consumes me. Nothing seems to help relieve the headache, and I was beginning to wonder if it was something else or if I was crazy. I at least feel like I’m normal, not that we MS’ers are ever normal. I’m going to talk to my dr again but thank you for posting this info.
1. Devin Garlit Moderator
 Thank you <inline-mention user-id="4040108" username="momkale"/> , you certainly aren't alone, that week before, particularly a couple days before, can be not so pleasant. In particular, I tend to get a bit emotional.
alicat79 Member
Today is the eve of my very first tysabri appt. I was diagnosed with RRMS two months ago. I am so happy to have come across this post because, let’s face it, I am scared!! I have had a rough go of things, especially considering the pandemic we are all in, and am really excited(yet, nervous) about the infusions. Thank you for answering many of my questions regarding what to expect before & after treatment.
1. Devin Garlit Moderator
 Good luck <inline-mention user-id="3941219" username="alicat79"/> ! I hope it goes well for you! Fell free to come back and let us know your thoughts afterwards!
cotneya Member
I was diagnosed in Dec of ‘03. I was a senior at JSU and I started seeing blurry. I was taking a night class because that’s all that would fit my schedule. The teacher let us out on break and I went and told him what was going on and that I was leaving. That was the last time I’ve been to JSU. I went to several doc appts and finally they diagnosed me w/MS after blood test, cat scans, MRIs. It was everything. They told me that if I wanted children it would be best to have them as early in life as I could. We’ll, 3mo later I was pregnant w/ our baby girl!! Everything was wonderful during and after that pregnancy. Then we went ahead and decided we wanted number two. When I got preganant w/ him, everything didnt happen just right. I went downhill bad w/him. I went on every drug that was on the market for MS at that time: Plasma Pheresis (where they pump ur blood out to “clean” it and pump it back in, and then of course, steroids, Rebif, Copaxone, Avonex, and Betaseron. I just could not get any better! I did not drive for 6 yrs because of this relapse!!! It was extremely serious, so when I found Tysabri, I was extremely excited! I could see again. I could drive. I could feed myself. I could talk. Everything a normal person does, the only the I couldn’t do was remember anything about the past. Tysabri is what was significant game changer in my life. I am so proud of it. I have been taking. It since my son was about a year to a year and half. I have no new lesions, only the damage from the previous ones. I truly believe in this drug and I praise it all day every day!!! You should try it if you have never done so!!!
1. Devin Garlit Moderator
 Thank you <inline-mention user-id="3969574" username="cotneya"/> ! Like you, I sing the praises of it. I can honestly say, I wouldn't be here today if I had not started Tysabri.

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