Side Effects

[WendyPR]

Hi. I'm new to MS and Tysabri. I was just diagnosed in July of this year. I basically had no symptoms. Maybe a little fatigue and dizziness but it was always "explainable". I wouldn't even have gone to the doctor then if it weren't for numbness/tingling in my hands. I work on a computer all day so it was very annoying and I broke down and went. And after a few MRIs and other tests this is where I am. I just had my first infusion last month and I am about to go for round two. And I feel worse than I did before. The fatigue is ridiculous, if I do anything strenuous or if I have a very busy day I pay for it for two days afterwards, and I have muscle soreness especially in my upper back and thighs that is almost continuous, and my face broke out like I was 13 again. Is this something that gets better the longer you are on it? I understand the purpose of doing the infusions from the "cellular" level but I did not anticipate feeling so much worse on it than I did before. Any advice for this beginner?

[immisceo]

My first year was a haze of hyper-vigilance. My diagnosis was at warp speed and on the back of without-warning episodes following a lifetime of perfect health. It was a nasty dose of a totally new reality. I look back at the state my head was in that first year and am just grateful the mind can not maintain that level of always being on the look out. Slowly I realised the sky was not falling, the slide was not inexorable, and life got back to a new normal. The first 'phase' of your relationship with MS is certainly a tough one. But you'll find your way.

[kwarendorf]

"I'm an OCD control freak that must be prepared at all times."

This could make things interesting :-) MS does pretty much what it wants, when it wants to. It's not always good about providing advance notification.

As you begin to wrap your head around your new reality, I'm sure you'll adjust. We all do :-)

It's going to be OK :-)

Kyle

[WendyPR]

I appreciate you guys responding so quickly. I am in the process of getting tysabri round two as we speak. I followed the advice and explained my fatigue and soreness to the nurse at the infusion center. She was sure to document and said my doc would be checking notes before my appt next month. She said she doesn't hear about increased fatigue often but maybe I should give it some time since I am so new and with few symptoms before I don't have much to compare to between the infusion vs ms. I have done my research because I was blown away by my diagnosis. But of course most of what you read says EVERYONE IS DIFFERENT, so without much time from diagnosis til now I just flat out don't know what to expect.... Which drives me nuts. I'm an OCD control freak that must be prepared at all times. I hate not knowing :( as far as why I went straight to tysabri from diagnosis wasn't made completely clear other than my neuro's concerns about the locations of my lesions. I'm glad you guys are hear to listen to me vent, at least I know it does get recognized and understood.

[rendean]

Hi and welcome! Sorry you need to be here but you'll find plenty of support and info.

I am on dose 28 of Tysabri. On the first 10 doses or so , I was so exhausted for the first 2 days but then each day improved, so only felt tired about 4 days total with improvement each day.

According to my neuro, some people have this side effect since the drug does esstenially attack the body and it is trying to defend itself. They even ran antibody tests to see if I was allergic to Tysabri due to my blood work.

However, I was NOT tired all the time. The othrs may have a valid point in that it may just be MS related fatigue you are experiencing. Do tell them when you go for your next infusion about your symptoms.

Please keep us informed about how things are going for you. Any more questions or statements you'd like to share are always welcome!

Cordially,
Ren

[SarahL2491]

My first DMD drug was Tysabri and I have been on it almost 2 yrs, and was JC+ from the start.  Tysabri is very good at lowering relapses, but of course, does not correct anything already there.

You may continue to have relapses or attacks, it is not 100%, but does a good job.  It is not usually a first drug, as you have been told, but your doctor had a good reason or he would not have put you on it

As Kyle said, let your doctor know…….in the beginning I had weird symptoms but was put on a steroid for 5 days and since then have no side effects to Tysabri.  It has slowed down my relapses, but they have not gone away.

Read up as much as you can about MS, since you are new to this, there are some excellent articles on this site and we are always here for questions when we can………welcome to our corner

Sarah

[kwarendorf]

Hi Wendy - Sorry you've joined our club.

As immisceo said, Tysabri is not typically the first DMD. It's only special folks, like you and me, that go right to the heavy artillery :-)

My initial diagnosis was Secondary Progressive MS. It doesn't necessarily mean anything scarey, just that by the time my MS got serious enough to investigate, it had been around for about 20 years! About half of the people initially diagnosed with Relapsing Remitting MS will move to SPMS after 10 years. At 25 years the number moves to about 90%.

I think your doc probably had reasons for going right to Tysabri. My doc felt I was beyond the reach of the CRABs (Copaxone, Rebif, Avonex, Betaseron), These are the traditional first meds.

I had zero side effects from Tysabri. Other than the PML issue, one of Tysabri's benefits is its fairly innocuous side effect profile. Given that you diagnosis is fairly new, I might be inclined to think your fatigue is MS related, rather than Tysabri related.

I think it is certainly cause for a chat with your neuro.

Kyle

[immisceo]

The fatigue may not be the result of the Tysabri itself, but the result of your particular disease course. Tysabri is not, at present, a typical first line treatment, so is it correct to assume your MS and test results pointed to a more aggressive approach being warranted?

It can take a few months to separate disease activity from treatment side-effects unless its something obvious like Copaxone welts.

Be sure to mention this to your team when you go for the second infusion so this gets put in your notes and you get feedback from the pros. In the mean time, I'm so sorry you're feeling this wiped out.