Copaxone and I are history

[essdipity]

After at least of 5 weeks of worsening effects from Copaxone and 8 weeks total, it's all over between us. I truly tried. Almost went to counseling. Arbitration was an option, and so on.

The bottom line is that I had terrible allergic reactions that snowballed. I tried several kinds of antihistamines, plus Singulair, and a bunch of different creams. All I got were hives, bruises, welts, rashes and misery. This was complicated by seasonal allergies, to the point where I felt like one giant, quivering, itching ganglion. Picture the Primal Scream painting. That's me. I wanted to gouge my eyes out from itching too. Believe me, I tried everything.

I emailed my neuro this morning, having found that a good way to proceed. I can think out what I want to say, say it succinctly, and not get distracted or interrupted. He answers very promptly too. This time he responded within 2 hours and asked for my phone number. (Surely he has that a bunch of places??)  Anyway, he said it is time to rethink this. He said that I may be among the minority that is hypersensitive, and that I'm generating antigens. He said it's time to rethink this, and I sure agree. The thing that clinched it is that he said it's NOT gonna get better, unlike what the Copaxone folks claim. That was the only thing that was keeping me semi-sane.

So---I will be out of the country for a while in May. When I get back he will switch me to something else. He didn't give me the option of 'nothing,' at any rate. But once again he was loathe to make a hard recommendation. However, the options he suggests are Avonex and Rebif. But why did he ask if I'd tried anything else? Does he return emails without ref to my file?

As neuros go, this man isn't at all bad, but he's kinda glib. I asked when he wanted to see me again, to which I got the canned response that he's always glad to see me. Then I asked how often he orders MRIs. Maybe never. He treats patients, not MRIs. I think I will press this one sometime during the summer, since my leg paresthesias are if anything, worse.

Most of you will do fine on Copaxone. I'm always the outlier for every med.

ess

[Quixotic1]

Iam on Avonex, the lower dose of Interferon-beta-1a.  My neuro thought I was having a pretty benign course and recommended it.  We are rethinking that.  With your heavy lesion load and horrific symptoms I think you might want to consider the higer dose Rebif, which many people are trying for people who might be nearing SPMS.

As for another difference, Avonex is "intramuscular."  You gotta push (goes in like butter) that baby in to the hilt.  If you are very slender you can probably use the 1" needle.  I need the 1 1/2" one.  I have very few symptoms.  Initially, for the first 4 months or so I had some muscle soreness (all over, none at the injection site), some stiffness.  Don't think I had a fever and no headache.  Those symptoms were completely controlled with Tylenol.  They are better controlled with an NSAID, like Ibuprofen (but I'm truly alllergic).  Initially the side effects lasted about 18 hours.  Now, if I have them at all, about 8 hours which I sleep through.

Birdie - I never saw any reason why LDN couldn't be taken with an Interferon either, but I haven't kept up on that info.  If so, it would have something to do with the specific effects on the immune system of each drug.

Quix

[Birdie75]

Sorry for your Copaxone troubles.  So far, I haven't had major side effects from interferons (I'm on Betaseron) if that makes you feel any more optimistic.  

I'm only up to 1/2 dose right now because they're titrating me, 1/4 dose at a time.  I've been through the first 2 weeks at 1/4 dose and am now on 1/2 and, other than a slight occasional headache (and who knows if that's attributable to the meds or not), I really haven't felt any different.  And I haven't had any injection site issues thus far.  I follow the nurse's instructions to the letter, but other than that I haven't done anything special.  

I think the reason for the decision is different for everyone.  Mine was (1) my husband (a pharmacist) did alot of research and believed Betaseron was the best option for my particular type/stage/etc. of MS, (2) I preferred the idea of the subcutaneous injection versus the bigger needle because I'm a chicken and (3) I travel alot for both pleasure and work and it's the one option that doesn't require refrigeration.  Of course, #1 was my most significant reason, but the rest had an impact.

I'm also taking LDN because, although some writings say it can't be taken with an interferon, my husband disagrees and the doc didn't have any problem with me taking both.  

Good luck with whatever you choose!

[Momzilla]

Yes, do tell, mon ami!

*

[doublevision1]

My neuro said the exact same thing last week, about not necessarily doing MRI's and that he treats patients, not MRI's!  They must teach them that line in neuro school.

db

ps: you mentioned being out of the country in May.  Are you going anywhere fun?

[MCBCON]

If I were in your place I would choose to try LDN or Tysabri.  LDN is more affordable.

[gollie]

possibly me also         Gollie

[essdipity]

Thanks so much for your support!  When the time comes I'll try Avonex. Why do 3 times a week when I can do once?

I do know what the side effects of that are, and I fear them. I have to take care of myself and my dog, can't be sick all the time. But I'll just have to cross that bridge if and when. And Deb, thanks for telling me there's at least one person in the world with no Avonex side effects. That is truly hopeful.

ess

[sllowe]

Hey Ess,

So sorry to hear about this.  I wish you all the best w/the interferon.  Maybe this one will do it.  Give your system time to simmer a bit though.  I don't think it's a bad idea since once it's hot, i think it's more than likely to react to anything.

I feel for ya, had an allergic reaction myself, just not sure which one.  I do know that it is just awful though truly horrible.  Hang in there, and enjoy the time you take inbetween meds.  Surely you will feel better being off of it.  Just leave it in the back of your head though that you will have to get back on something in a few months.  Takes the system a long time to get rid of drug induced reactions, so take the time your body needs.  

(rebif is 3x's a week, dbl the dose of avonex, similiar med, but a little different, i.e., different company, etc.)

hang in there,
SL
p.s. Duuuurrrnnn a Neuro that answers email! WOW

[Deb61]

When arbitration and counseling doesn't work, it's time for a divorce.  You've given it a fair shake.  

My sister took Rebif, which is a three time a week shot medicine.  She had to titrate up until she reached the full dose.  She still had headaches and flu like symptoms until about the third month--after that, no problems.  However, she did develop an allergic reaction to it after about a year and had to stop.  She's now on Tysabri.  It's too early to tell yet how that's working.

I hear that Avonex is basically the same medicine as Rebif, but lower in dose and is given once a week.  A colleague of mine has just started it about three weeks ago and has noticed NO side effects NONE, NADA.  She was expecting a few chills or a fever or something, but has yet to be sick at all--so you can never tell sometimes, how a certain medicine will react with someone.

I'm surprised your neuro isn't ordering MRI's, because what I understand is that some insurance companies need the "proof" that the disease-modifying drug is working or still needed and to prove that you still have MS (silly insurance companies!).

Big hugs, Ess.  I hope you have a wonderful time on your trip--thank goodness you won't be as miserable scratching yourself to death!!!

Deb

[monotreme]

Hi ess,
  I think you made the right choice.  You gave it a valiant effort.  It wasn't meant to be.  I hope you can now enjoy your trip and move on to a new drug when you return.

  Elaine

[Heather3418]

You gave it your best "shot" so to speak.  You gave it a valiant effort.  I am sorry things didnt work out for you with Copaxone.  If it were not for all the injection site reactions, I think the Copaxone would have worked well for you.

At least with the Interferons, they are a once a week injection (I think Rebif is like Avonex, once a week)  You may have some slight injection site reactions, in that you will get a slight raised area (maybe)  and some feverish feeling at the the injection site, but I found when I was on Avonex, that it was a very short-lived reaction.

Don't wait too long before you start back on some type of DMD.  With the Interferons, they must be kept refrigerated until you are ready to use them.  Not like with the Copaxone.

Keep us updated on which drug you decide to use.  And yeah, I think a follow-up MRI wouldn't be a bad idea in light of your increased leg problems.  It certainly wouldn't hurt to take a look to see if any new lesions are developing.

All the best and big hugs for all that you endured with Copaxone.  God Bless you,
Heather