10+ year user of Copaxone must switch

[granny2blakely]

Hi I have a question- I have been on Copaxone for over 10 years and I am suffering with indented sites which can no longer let my shots be injected.  My question is which of the ms treatments should I go to next?  My MS dr. gave me papers on Avonex but the side effects is what I'm worried about.  My Copazone has worked so well I'm afraid to change but just running out of places to give the shot.  Thanks for any reply's..

[doublevision1]

Have you considered Gilenya, which is an oral treatment?  

[G8rLeslie]

I started out on Avonex and gave up on it after 9 months. The side effects were too debilitating for me (flu-like symptoms). I then switched to Copaxone and stayed on that for about three years. I then quit that because I didn’t like the indentations in my skin. Next on the list was Betaseron. I withstood the side effects for two years before I finally decided that the headaches and fatigue were too much to bear. I have now switched back to Copaxone and will use this until I am a completely used up pin cushion.

My doctor tried to get me to try Tysabri or Gilenya. I was too afraid of both. They are both too new for me. I like when things have been around awhile so all of the kinks can get worked out. One thing I heard about Gilenya was that it could cause cysts on your retina. I have enough vision issues due to the MS, I didn’t want to add to my list of problems. Maybe in a few more years I will consider Tysabri.

I know I wasn’t much help, but one thing to keep in mind is that everyone is different. Your reactions may be completely different than mine. Good luck with your decision.

[SarahL2491]

I'd say Tysabri has rather low problems.  Its very closely monitored by the FDA and the TOUCH program.  Once every 28 days is very appealing plus many insurance co's cover it as its an outpatient procedure, not to be confused with drug plans.

I was on it for 10 months, had some GI discomforts, and am going back on it, probably, as we now figure those were MS related.  I'm also JC+ but there are new rules in effect now and the % of PML is extremely low, easier to win the lottery!

Good luck whatever you decide, as G8rlLeslie said, reactions may be completely different from hers and from mine.

[TLC_31]

Avonex has stood the test of time for thousands of patients, and I would certainly agree with your doctor about your next step in the battle against MS.

It’s fair to be worried about the flu-like side effects of Avonex or other interferons, but there are simple things you can do (which I won’t get into now) to minimize or mitigate those effects. It’s possible you will find them debilitating (as did G8trLeslie), and it’s possible Avonex or any other drug simply may not work for you, but it’s also possible you may not deal with side effects at all.

I’ve used Avonex for more than eight years. Side effects certainly were nasty in the first few injections (and these days titration is common to avoid that). Side effects were undesirable for a few months, but I kept reminding myself they were better than the disease itself. And for a few years now, with rare exception, side effects are inconsequential. My problem with Avonex is needle-phobia, and I don’t self-inject anymore, but after 10 years on Copaxone daily you’re a pro with needles!

Many patients live well on Tysabri and Gilenya, but there are well documented risks that might not be worth facing if your MS is stable. And Gilenya (along with others about to hit the market) still may be a bit of an unknown. Yes, I’m biased … I tried Gilenya about a year ago for 19 days and couldn’t handle its side effects on my heart. Like I said, however, people do live well on Gilenya.

Ask questions anytime!

[Ojibajo]

I had no issues with Avonex other than I hate giving myself shots and taking meds in general. Drink lots of water the day before the day that you inject and the day after you inject, no caffeine and before to take an NSAID an hour before injecting. I inject about dinner time so that I sleep through an side effects.

[Irene5353]

I was on Avonex first when it came out in the 1990's.  I had bad side effects and the IM shots while once a week are painful.  One nice neurology fellow prescribed Lidocaine topical cream to help deaden the area before the shot.  It worked well.  
Try the Avonex and see how it works for you.  I like the Copaxone because it has the least side effects.  Can you take the Copaxone every other day to help your body recover a bit?  
As for the other treatments - I do not know about them but anything with heart side effects makes me think the researchers do not value us patients very much - the same with Tsybaria when folks died.  We were not well considered there!  
If you have a good neurologist trust their input but you are the decider.  Can nutrition help with any of this skin issue?  Let me know how you fare.

[Irene5353]

Sorry for my mistakes in grammar.  I have been having a long attack and have noticed changes in my grammar and I should be using Zoomtext with this so I can actually see what I am writing!!  Zoomtext is by Ai Squared in Manchester, Vermont.

[Guitar_grrrl]

I'm JC negative, and I'm loving my Tysabri!  I'm going on my third year with it, and no problems.  Love the 28 day scheduling!

[sagecountry]

I've been on Avonex for the past two months. The side effects have been minimal for me. My problem is now my liver enzymes are elevated. Dr. said I may have to try something else if my elevated liver enzymes continue.

I don't like the idea  of a daily shot with Copaxone, but I'm also concerned about the side effects of the oral medications. I won't consider Tysabri at this point because my MS diagnosis is fairly new and I want to try other treatments first.

I am learning that this disease varies from individual to individual. What works for some, won't work for others. Also, the severity of the side-effects varies too.

I got myself so psyched out about the Avonex side effects, but I only had two times where  I experienced them. Staying hydrated has been the key for me as well as taking NSAIDS before the shot and again 4 hours later before I go to bed.

Hope whatever you decide works well for you.