Are the flu-like symptoms as bad as they sound?

[airyona]

Hi to everyone,

I am trying to deside which modifying drug to take. Lulu posted awonderful website that has helped alot. I just thought if I could get some opinions from some of you already taking them. I am wondering if the flu-like symptoms really last for 24-48hrs and how barable are they?

Thanks to everone

Airyona

[airyona]

Thanks for all the info, it really helped.

[Quixotic1]

Re: Copaxone : A couple years ago Copaxone was not yet shown to delay progression of disability.  It was more regarded by neuros to be better for the less severe cases of MS.  I believe that is changed.  Since then it has shown to delay progression of disability and to delay brain atrophy.

Copaxone was not approved for use in secondary progressive.  I'm not sure it is yet.  this gives the impression that it is a less aggressive med, though other studies do not bear this out.  So, I think many people still regard Copaxone as a "lightweight" drug.

This may explain why it is not chosen more.  

But, the daily use and the problem with local reactions (burning, stinging, itching) that persist or the persistent lumps it can have, are all reasons people chose other meds.  Personally the thought of having a daily spot of itching or burning would steer me away from it.  I HATE itching!

Avonex is popular because it is only once a week and has fewer side effects (and a lower incidence of neutralizing antibodies) than Rebif or Betaseron.  These have added to it's popularity.

Rebif has consistently shown to be effective in all the parameters studied.  Statistically it has a higher level of unacceptable side effects and of production of neutralizing antibodies.  I think it was the first (and may still be only) drug approved in SPMS.  This makes this one popular.

Betaseron is the oldest, thus possibly most recognized and trusted.  However it has the highest level of unacceptable side effects and a very high rate of inducing neutralizing antibodies which render it ineffective.  Again, when it is tolerated it is as effective as the others.

I think all of these play into the reason why everyone isn't put on Copaxone.

Remember, not all people get the flu-like side effects on the interferons.

Just to put stuff into perspective.

Quix

[GrannyJo6]

I'm alot like essdipity in that I rarely have a reaction from the Avonex. A headache once in awhile but I have learned to take Advil ahead of the shot and then two more in the morning and I'm generally fine. It varies SO much from person to person! I just really like only having to do it once a week!

[airyona]

Thanks so much for all the responses.

Yes Lulu, thats the one. Actually I am leaning towards Copaxone.

I guess I am worried about the flu-like symptoms becaues my legs already hurt so much, there are days I wouldn't be able to stand it if they were worse. I am still working and right now I'm lucky to sleep 5-6hrs. Can't get to sleep and when I finaly do, wake up before the crack of dawn and can't get back to sleep. On my days off want to sleep so badly, try my hardest to sleep and can't. Hoping this will get better.

My son is 11yrs old now, found out he had diabetes type 2 when he was 4 1/2. obviously I had to be the one to give him his shots (4-5 a day) and stick his finger 4-5x a day). watching him ( he now does it himself), and seeing how strong he is, gives me strenght to think that he can do it and has for quite a few years, I know that I will be alright. So I guess the size of the needle or frequency of injections doesn't bother me.

I have my appointment with neur Wed. to discuss treatment, will see what he recommends before officialy making my choice.

[risnerrose]

I read an article that suggested "those that work full-time and mothers of young children" prefer Copaxone.  If this is the case . . . why doesn't everyone start with Copaxone?  Why is my neuro recommending interferons?  

Sherry

[Quixotic1]

My flu-like symptoms are limited to mild to moderate achiness of my muscles and some stiifness.  This lasts less than 18 hours.  I sleep through 12 of those.  I don't really feel sick at all, just a little achy as if I had worked out too hard the day before.  I don't usually even have a headache.  The first two or three months were worse.  The aching was very tolerable but a little worse and I felt like laying around the first day after.

I would have to say my experience is like ess'.  I would have far less achiness if I could take Aleve or ibuprofen, but I am allergic.

I have NO local effects.  Bearly any tenderness except maybe the next day if I really look for the injection site.

Q

[Lulu54]

That must have been the UK site that walks you through all of the available options.  - glad you found it informative.  Is copaxone not an option for you?  just wondering, Lulu

[JonM]

The flue-like symptoms are bareable and are worth the trade-off of slowing this damn disease down.  Every person will have some side-affects but how severe and how long they last, only you can find that out when you take them.

Good Luck!
Jon

[essdipity]

Unfortunately there's no way to tell how you'll react to one of the interferons. The variability is huge. I inject Avonex once a week, at night before I go to bed. Then I take an Ambien for sleep and an Aleve to help with aches and pains. I usually wake up the next morning just fine. So I'm very lucky.

Others here have, or have had, more severe reactions. Many people report that after a few months they get almost no symptoms.

Before Avonex I was on Copaxone, and I turned out to be wildly allergic to it. "It just goes to show you never can tell."

ess

[sllowe]

HI!

Oh boy, this is a hard step to take, which one does what, how will it make me feel, which one is best, etc.  I'm sure your head is reeling over it - mine did too.

What I learned though is that that no matter what one you choose, you are not making a bad choice.  In the end, from what I've read, they are all equally effective.  Some of the things they tell you to include in your decision is how often the med is administered, and the size of the needle and side affects.

I chose Rebif which was my neuro's choice for me.  I did get flu-like symptoms that included headache, slight fever, some aches and pains, etc.  But, with REbif the give you a titration dosing schedule which makes you barely feel them coming on and they were very bearable for me.  They will monitor the chance of it affecting your liver and blood cell counts.  I've been fine so far.  

I took advil, tylenol or naproxen right before bed so I could sleep through any possible symptoms and it worked.

The needle is very thin for Rebif and I take a shot 3 times a week. Avonex is inter muscular and is taken once a week and Quix said the needle is very small and thin too.  The flu-like symptoms do start to dwindle as time goes on.  So, for me, no, not as bad as they sound.  I worked, managed the house throughout, etc.  Was a little tougher, but doable.

I had a wonderful nurse assigned to me who has been teaching the technique and tips, etc for a very long time and she shared what worked best for the majority of her patients, including where to inject, etc.  I believe all of the meds have this service too.

We have discussed the meds a lot and if you type in search this community and type in "dmd" "avonex" or "rebif" or "med decision" etc., hopefully you will be able to read up on what we've discussed.  I know for sure I've asked a lot of questions about it too.  Let me know if you have trouble finding the threads and I'll do some poking around for you.

Keep asking away! We're here for you.
ttys,
Shell

[Mand125]

Hi there
I have been taking betaseron since mid August, I can't say that I have had the flu-like symptoms, I do get a headache though the day after my injection, it lasts a day or so but it isn't bad at all, easily controlled with ibuprofen (not sure if that has a different name in the US), I have stopped taking the painkillers though because I didn't like the idea of taking them almost every day for months. The headache is not bad and I feel the possible benefits from the DMDs far outweighs it. I do realise that others have flu symptoms, I'm not sure if I'm just lucky or if those symptoms are not all that common anyway.

I'm sure you will get lots of advice on this forum.
Mand