can't tolerate copaxone either?
 

Here I am again worrying about what to do. :confused: Oh yeah, and having a short cry too. I tried the Rebif for almost 2 weeks. Not only did it trigger depression (which is something I have had for years but was/is under control) but it made me so sick all 24 hours, 7 days a week (no break at all) that half the time I couldn't get out of bed. Sick as a dog. I was switched to Copaxone. I was feeling extremely optimistic about this, even though it was daily. I've been on it 2+ weeks now. Yet I seem to be having unbearable side effects from the C. To be expected, the shots hurt like hell but the skin reactions haven't been too bad--some go away after 2 hours. BUT I started out with migraines, nausea, and super anxiety (like drinking 20 cups of coffee). A couple of times I have had chest pain and feel short of breath. Tonight I got the shortness of breath again not to mention the fact that I just feel like I have the flu--still having headaches, nausea, insomnia, and now some muscle aches. I was told C. shouldn't do this. Overall, I have never tolerated medications very well. I know all of our bodies are different but I feel like a failure. Everyone else seems to be able to handle the C.

My fear is: what is next????? I feel like I have to take something, esp. after the neuro scared the crap out of me about my brain. And I want to take something. What if I can't tolerate anything? It's not like there are many options out there. The only real symptom I've had is O.N. Tysabri seems a little scary and don't you usually go on it if you are having more overt severe symptoms?

What if I can't tolerate anything and the MS just progresses? :eek:

I feel like I can't seem to get a handle on the MS this past week or so. I think being on the meds just makes it that much more "real."

I am feeling really scared about this and overwhelmed.

Natalie,

If Copaxone is not working well, then talk to your neurologist ASAP.

There are a variety of medications available, and if Tysabri is offered, then go with it. It is a simple medication and is only used once every 28 days.

Hang in there and be sure that you contact your neurologist ASAP.

-Vic

I had headaches after starting the C, those went away after about a month or two. I also had to got to the potty a lot after taking the C, and that went away after a few months.

I had a couple of injections (one about 2 months after starting the injections, and the other one about 2 months ago) where I had a weird chest pain sensation and felt like I was breathing weird. (1st reaction was caused by my dad....he injected me in the arm, way too quickly, 2nd time was me, using the autoject and shooting too close to a vein or an artery)

I had a LOT of anxiety...most of it because I didnt want to shoot up, but knew I had to, and that it was going to hurt. I still get the anxiety some, but no where near what it was before.

My site reactions are still pretty impressive. I've got a killer bee sting on my left thigh right now, and I'm trying to find a spot somewhere that's not too close to an older injection site, and it doesnt look like I'll find one.


Could it be that some of your anxiety is from the doctor scaring you earlier and also from the stress of having been just diagnosed and the whole crappy situation of having to inject yourself every day?? I know that sometimes I just sit here and cant believe that I have MS and I get really annoyed at having to poke myself with a needle every day.

There are other meds you can take for MS. Some of them I'd like to try myself except that my neuro has pretty much blown me off when I ask about these particular meds (LDN and Estriol) I personally would not do Tysabri, but that's because I've read some of the research on it, and am not all that enthused by it.

I'm using Copaxone not because my neuro suggested it, he told me I could try any one of the CRABs. I decided to start with the C because it had the least number of side effects, of course, it sucks that I have to inject it every day, but it doesnt give me the flu-like side effects. I dont like the killer bee stings, but I guess my inner masochist is telling me to stick with it for awhile.

There are other meds you can take. So, dont feel like a failure, it's not your fault when/if you have a reaction to a medication.

I go see my neuro in two weeks. I'm definately asking him about the LDN again, because I'd like to try it. If it doesnt work for me, or if it makes me sick, I'll just stick with the Copaxone.

nat you still have a few more meds to try before you, assume the worse, dont fret so much, it takes time and you will be fine, ones that work for you may not for me and vicea versa, dont stress over something you cant answer, take it one step at a time

My first months on Copax were fun. :rolleyes: The first couple of weeks I had tummy aches and bathroom issues. And it took months for the site reactions to go down.

Then within the first two months I had two IPIRs, which was shortness of breath, chest pains, and flushing immediately after the shot. The first one was long since I was freaking, but the second one was only about 10mins since I kept calm since I knew what was going on. When these happen, it's advised to contact neuro and let him know what's going on. Each neuro has different advice for them.

Because I'm one of the ones that Copax causes insomnia, I've switched to taking it in the morning. That move has helped some too.

Like the others said, there's still a few more avenues of meds out there if you need them. Sorry you are having such a rough time on the copax right now. :hug:

Ughhh.....I just called my neuro and she is out of town from April 17-22 and her nurse is out today on Friday. :rolleyes: Now what do I do? Keep taking the C. until she gets back? Stop it? But if I stop it than I'll lose all the build up days I've accumulated to adjust. She's the only MS doc. in the practice so no one else would have any advice. Anyhow, I finally got in to the big MS clinic here in my city. Appointment is June 5. Waiting list was almost a year. Then I guess if one of their neuros goes out of town than you aren't stuck because they all do the same thing.

Call Shared Solutions and ask. They may know what to do. (altho, I suspect they'll say to keep taking it)

I was bad last night and didnt take my C. I was itchy all over last night. I think I ate something I'm allergic to...not sure what it was tho. I just didnt want to inject something into my thigh that might also be a little itchy too.

So, I'm about ready to take it now. (I kind of wanted to switch to mornings instead of evenings anyways) I'm hoping to get into the habit of doing the injections in the mornings after I wake up...just not too soon after waking up, I dont want to accidentally stab myself in the eye because I'm still sleepy.


Oh! Another suggestion for injecting and avoiding some itchy reaction sites. I was told by Shared Solutions that in areas where you dont have a lot of fat to pinch (thigh areas) that you can inject at a 45 degree angle instead of the 90 degree. (that's if you're doing it manually...if you're still using the autoject, you've got to do it at the 90 degree)

Are you still using the autoject?

Please make sure you aren't talking yourself into it. SOmeitmes, by not being on the meds, we can have a sense of denial (I should take my own adivice here, but nah). Also, interferons lower your serotonin levels, and there are natural ways you can go about increasing them, which will combat the depression!!!
For instance, 5-HTP, green leafy veggies, bananas, soy, lentiles, pumpkin, exposure to bright sunlight, exercise (sixty mins), NADH, SAMe, Fish rich diet.

On top of everything else, the interferons can take 3-6 months before you do not have the side effects!! I know that is a long time, but if you can hang in there, it sounds as if it is the best (once again, own advice, but can't right now).

Good luck. Don't give up on them to quickly!

Unless you are having a dangerous reaction, to any drug, you have to give it time for your body to adjust and for the drug to start to work.

Not that long ago, we had only the 4 choices . . . and most of us would have advised you that 2 weeks was a totally insufficient amount of time to make judgement on these drugs. Even if you try Tysabri, you will hear that you ought to give it 6+ months to see if it is going to work for you. This is true for the CRABs too . . .

The side-effects you are mentioning "seem" to be fairly common, according to the following website:

"In controlled clinical trials the most commonly observed adverse experiences associated with the use of glatiramer acetate and not seen at an equivalent frequency among placebo-treated patients were: injection site reactions, vasodilatation, chest pain, asthenia, infection, pain, nausea, arthralgia, anxiety, and hypertonia."

http://www.rxlist.com/cgi/generic/glatiramer_ad.htm

I agree that you should call Shared Solutions, just to put your mind at ease.

Cherie

I think Cherie's right, giving it at least 6+ months sounds like a good idea.

I had really bad site reactions for my first 6 months. They started getting better in the 7th month, and then I got a few (like 10) dull needles...which are especially painful when you're autojecting a dull needle into yourself, and so you get a huge sore because the autoject forced a dull needle into your skin, and along with the regular site reaction that you can get normally from the shot.

This is why I switched to doing the shots manually. I'm controlling how much force is being used to get the needle into my skin, if I get any dull needles, I can usually tell pretty much immediately if it's dull and I can toss that syringe and get a new, and hopefully not dull syringe.

I dont get all anxious and freaked out anymore by the shots because I think it's a bit easier for me (and less painful!) to inject manually.

Sometimes I get my dad to give me a shot in the out-of-reach places, and he's a lot more gentle with the shots than the autoject is. Now that I've got my dad to understand that he has to inject slooooooowly.

Well, I just went ahead and took the shot tonight since I couldn't get ahold of the neuro to ask what to do and I didn't get home from work until after Shared Solutions had closed. I made myself go out to dinner with a friend and dh and it took my mind off of the whole thing. I was feeling pretty crappy today--really bad headache and nausea and complete brain fog (which I attribute to the drug as my mind was sharp as a tack before I went on it). However I saw my shrink today and she suggested taking some ativan 30 mins before I do the shot. That seemed to take the edge off the heart racing buzzy feeling. And I didn't get the hard to breathe, chest pain thing this time. Went back to the auto-stabber and YIKES!! another massive welt. I think I may stick with manual.

I know I have to try to give it some time to see if my body can adjust. I just don't do well with meds period. It took several years for me to be able to find and tolerate an anti-depressant that worked. I guess I have too sensitive a body. As a result I get massively frustrated! :eek: I think the brain fog is freaking me out -- I drove out of the garage the other day, an hour after the shot and feeling spacey, and took the freakin' side mirror right off the car. UGH. I've never done anything like that before. Today while teaching I was having serious difficulties keeping my train of thought.

The frustration may just be my resistance to the idea that MS and the meds are interfering with my life and all my work plans this summer. I'm in the resentful stage right now.

Anyhow, thanks for your supportive thoughts. :) Cherie you've inspired me to keep going for a little while longer, toughing it out, and hoping my body can adjust.

Have you had optic neuritis? When I was in the midst of my first major flare, which was a moderately severe optic neuritis attack, I was hitting my mirror on the side of the garage, and parking way too close to the wall of the garage.


I guess I was having problems with my depth perception.

Now I can tell when my eyes are getting all MS-y, I start pulling in too close to the garage.

Interesting thought Erin. Yes, my first attack (and really only symptom accept maybe some dizziness) was the O.N. It was mild. But I"ll tell you that this incident couldn't be depth perception related because like a complete ding bat I didn't even bother to look and just hit the pedal and burst out. What on earth was I thinking? I went to the shrink today before I had to drive to school and teach. I left my bag with wallet, glasses, school work, lectures etc. at home on the kitchen counter, got to the doc. and realized -- jeez, I forgot my "life". How could I do that??!!! BRAIN FOG. Had to turn around and drive 30 mins home to get it and then 30 mins. back to school. I feel like the Copaxone is making me stupid.

I dont think the Copaxone is making you stupid. Maybe you're having a "little" flare and it's messing with your cognition. I had a similar problem about a year ago that was so annoying. It came back when I had my little pseudo-flare about a month ago.

I really hate it when I'm trying to think of a word and cant get it...and I have to ask my boyfriend roundabout questions to get him to tell me what the word is.

Frain Bog sucks!

Hi Natalie,

Here I am . . . one who has never even tried any of the meds because I too have a terrible time with most anything . . . telling you to stay on. :rolleyes:

Knowing my background, and the way that the MS has presented itself with me, my doc and neuro have advised me not to take them. So, please know I am not discounting your experience or issues with the drugs. I certainly wouldn't blame you (in the end) if you opt out. :hug:

I really just wanted to say that if you are strong enough to give them a try . . . you ought to give them a fair shake. If they don't work out, it is highly unlikely that you will try them again . . . so you want to be sure that you are not giving up too early. None of them are that great, when it comes to side-effects (especially with med-sensitive people), but if your body can adjust, perhaps this will keep you healthier with the disease for longer.

I'm glad to hear your anxiety about taking them has settled down a little. :)

Cherie