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Avatar universal

Copaxone vs Tysabri

Hi All,
I have a question that is mostly about Copaxone.  I have been on it for 7 weeks.  I am feeling better overall, but have a localized reaction EVERYTIME I take a shot.  Initially and for a couple of hours I have severe pain, as if I am injecting acid into my skin.  Then, I develop a reddend area about 6-8" x 4-6", with a painful lump that is always about the size of a lemon.  It takes 5 or 6 days for the are to completely fade and then there is often brusing.

I told my Neuro that if this is normal, I could deal with it as it is helping.  She's funny, complimented me for being such a brave soldier but thought I should stop the Copaxone.  She said I might be able to tolerate the side effects for awhile, but she said "can you handle this for the rest of your life"?  Not to mention, that I will soon run out of good sites.  I am a bit afraid of the Tysabri.  Though she says there have  6 or so episodes of PML, some were Europe where they don't have the Touch program and pt are not followed as closely.  She says 83% of users have no flairs in a 2 year study.  She will see me monthly or sooner of course if necessary.  Also she says they now know to do a hematology exchange of some kind where they wash out the Tysabri out of the body if a problem is reported quickly.

So...... any others with serious site issues?  What was done about it?  Who thinks the Tysabri is a bad idea?

Thanks so much,
Salamander

13 Responses
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Avatar universal
I just did.  After 4 infusions my legs felt much weaker and my balance went South. For example, I am a wall walker now.   Ask your neuro, they will tell you.   I am going back to Copaxone and then to something that will help. ???.  My philosophy is that if I take a medication, I will wait for positive effects as long as I don't feel worse.  Unfortunately, I don't have the time.  Good luck.
Helpful - 0
1394601 tn?1328032308
If I couldn't take Copaxone, I would be trying another interferon before I went to the big guns filled with a higher risk factor.  Save Tysabri for later..if those other things don't work.  I used Rebif and found it easy to use.  Shots just three times per week and I believe it has the smallest needle available for an interferon.
\
Good luck!!  Keep us posted.
Helpful - 0
Avatar universal
Seems to me injection site reactions are normal. Also, my neuro just told me that copaxone needs to go where there is fat at the injection site so it's better to inject it in your abdomen than arm or leg. Rotate injection sites on abdomen as one does for insulin - make a clock and each day do the next hour or two hours - that helps you keep track of where you have already been.
Helpful - 0
1157949 tn?1262516431
My Wife and I just had a meeting with her Neurologist last week about Tysabri and Copaxone. If You Ever had treatment from Chemo therapy  Do Not use the Tysabri. The reported deaths from Tysabri are arising from people with past Chemo treatments and from people that are taking  Tysabri along with a second form of treatment.

Some people with MS have a dormant Virus in them called JC Virus. Tysabri will trigger that Virus, the Virus lays dormant in the Brain.  Until they approve the PRC Blood test for that Virus, there is only a slight way to detect it, and that is with a Brain and CSpine MRI.

Therefore, Tysabri is quite risky. Copaxone, on the other hand is a much "cleaner" treatment, less risky and easier on your system, with about the same amount of side effects as MS itself.

Copaxone is safer. My Wife had her 2.5 year lifetime treatment of Novantrone ..therefore she was told that she can Not use Tysabri, because it could trigger JC  Virus, if she has it laying dormant in her Brain.

Go with Copaxone.
Helpful - 0
Avatar universal
I have been with Tysabri for 5 months and I did not feel any improvements at all. Instead, a lot of my muscles are weaker. Such as my face is down and my legs are weaker. My doctor said that I should she the benefits after my six infusion of Tysabri, but I do not feel cvonfortable with that statement. If someone have any information about this situation, please send it to me.  I am planning to switch from Tysabri to Copaxone.
Thank you!
George
Helpful - 0
Avatar universal
Thanks for your comments,  I will make another appointment to discuss some of my questions.  My Neuro is fairly young and very aggressive (with treatment not personality).  She seems more impressed with the newer meds and the lower exacerbation rate.  She also says that the PML reactions are a pretty tiny number of users.  What I don't like is that you can get PML after taking the Tysabri for a long time.  It's almost like, you can't relax, you always have to think about how you are feeling.  I just can't make myself feel good about the Tysabri, even though the Neuro is really positive about it.

Thanks and Blessings to all,
Sally
Helpful - 0
562511 tn?1285904160
Consider calling the Copaxone nurse.  I think they call it Shared Solutions and the telephone number should be written all over the Copaxone literature. They have been helpful to me in the past.  
Helpful - 0
198419 tn?1360242356
Hi there,

Well, I have no experience w/the Copax., but thinking she may have suggested it because of it's good track record, and your current status w/the injections.

It is worth considering the interferons, but she may have suggested the other and not those for a reason.

Do you have thyroid problems or anything else?

We do have a couple on the forum who are on Tysabri.  I will see if I can come up w/the thread of those who are on it.

Helpful - 0
382218 tn?1341181487
The site reactions that you are describing are consistent with my early experience with Copaxone.  Early on, what helped me was: rotating sites carefully; not using the alcohol wipe; pre-warming and post-icing of injection site; and using the auto-injector.  

I was particularly taken off guard by how painful the actual injection was; the burning/stinging was very intense.  This came as a surprise to me as I had previously tried Rebif (had to stop due to increase in liver enzymes) and that didn't hurt at all.

However after a few months, my Copaxone shots were going better and better, and now, 9 months later, the injections don't hurt and the site reactions are minimal; lumps, bumps and bruises disappear after a few days if they occur at all.  Every once in a while, I do have a shot that will sting, but this occurs very infrequently and passes quickly.  There is no need for me to pre-warm and post-ice anymore.

I am a bit surprised that your neuro doesn't encourage you to stick with it and give your body time to adjust to the medicine.  I haven't heard of anyone taking Copaxone who DIDN'T have the reactions you describe; it is a typical reaction and one that the drug company advises is likely to occur.  My understanding of Tysabri is that it is generally considered a second-line treatment, typically used for more aggressive disease courses that do not respond well to Copaxone or the interferons.  You are so early in your treatment, it seems to me it is too soon to tell if you truly cannot tolerate it, and way to soon to assess whether you are benefitting from it.

Good luck with your decision, and hopefully you found the responses to your question helpful so that you can make a more informed decision on your treatment plan.

Peace

~doublevision~
Helpful - 0
Avatar universal
I've read that actually warming the injection site before instead of icing and injecting at an angle can help lessen the injection site reaction. I heard this long after I stopped using Copaxone so I don't know if its true.
Helpful - 0
195469 tn?1388322888
I have been on Copaxone for over a year.  I had the same kind of injection site reactions in the beginning.  The longer I take Copaxone the less and less severe the site reactions were.  Do I still get small lumps?  Yes.  Does it still sometimes sting?  Yes.  But I also stopped using the alcohol wipes all together and do my shot after I shower.  That helped alot with the injection site reactions.  Another thing that helped the site reactions, was to self-inject, instead of using the auto-injector, which seems to "slam" the skin, making the shot worse.

I get the help of my "other half" for areas that I cannot reach.  It seems to be important that the needle goes all the way into the skin.  But I won't sit here and lie to you, injection site reactions ARE a part of using Copaxone.  They just get less huge and less stinging and painful, the more you use it.

I have NO side effects from the Copaxone at all, except for the injection site.   No flu like side effects like with the Interferons and no pre-medicating with Tylemol or Advil, like I did when I was using the Interferons.  I took Avonex for three years and it was a GREAT drug at slowing down the MS.  I only quit because the shot left me feeling like I had the flu for 3-4 days after the shot.  This does not happen to everyone though.  Some people claim they have less side-effects after a while on Avonex.  Since I was on it for three years, I think I gave it every chance I could.  With the Interferons though, you have to have your liver enzymes checked at least every six months.  With Copaxone you don't.  The best part for me, is that the interferons can make you prone to depression, if you are already pre-disposed to depression; which I was.  You have to make sure when you are taking Interferons, that if you feel depression coming on, that is out of the norm for you, that you contact your doctor at once.  It can be treated and still take the Interferon.

Icing the area after the Copaxone injection can really help or some people say a moist hot washcloth on the area for about 10 minutes help.  I say ice...works best for me, if it was a sore injection.  I no longer have to follow up with ice or heat...I just go about my day.

Over all, it's a decision that you have to make.  It's want YOU want for your life.  All of the DMD's are good drugs.  Tysabri seems to have the most serious side-effects overall.  It would be my last choice to take, but again that is your personal decision.

I say to read up on ALL of them and then make your own decision.  I would rather live with an injection site reaction than deal with any chance of liver toxicity or flu like symptoms.  See, it's just my personal decision.  Others do just fine on Interferons.

As I say, read the literature on ALL the DMD's.  Know the good things as well as the bad.  Until there is a cure for me, we know that we are going to be on these drugs for a very long time.  Can't wait for the oral medication to come out, but I have heard that it is an interferon drug.  I may not be able to tolerate that one either, but will try it when it is approved for use by the public.

Best of luck to you in your decision.  We all have our preferences, but it always comes down to personal choice that the patient can make for themselves.  In this case, I do NOT think the doctor should try to persuade you either way.  With the DMD's I think it should be entirely up to the patient, unless the doctor says that your choice is not performing it's job...like not preventing more attacks or further damage due to brain volume loss.  That's what we all seek to prevent with these drugs.  NONE of the DMD's will help your symptoms.  They are designed to prevent attacks and further damage.

Heather
Helpful - 0
572651 tn?1530999357
So sorry to hear you are not tolerating the Copaxone.  But I'm with Ess and ask why not one of the interferons?  I know just enough about Tysabri to recognize that it should be used only as a last resort, when all of the other treatments have failed and your symptoms are progressing rapidly.

my best,
Lulu
Helpful - 0
Avatar universal
Well now, as someone allergic to Copaxone, I do sympathize. I suffered till I couldn't stand it another day. It doesn't get better.

Still, why are you not considering one of the interferons? After switching from Copaxone, I've been on Avonex many months and have had little trouble with side effects. I pre-medicate and sleep off the vast majority of the reaction. That's true with a great many of us here.

Tysabri is somewhat scary to me. Not to say I wouldn't use it, but I'd have to have tried everything else first, and my disease would have to be very aggressive. I guess for me it would have to be 'last resort.'

ess
Helpful - 0
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