Should I switch meds?

[LoveMyBostons]

Hi everyone,

I've been on Copaxone for 7 weeks now. The itching has become almost too much to bear. I had to leave work 3 hours early yesterday because I couldn't focus on anything but the itching & burning. This also led to a mini-breakdown in which I cried and cried and felt like the MS was winning. That was the first time the MS has made me miss work.

I have been in so much pain every day for about 2 weeks. I'm in pain when I wake up, I have a hard time walking around at work, I have zero energy to get much accomplished when I get home. I don't know if I'm in a relapse or what. The nurse at my neuro said that MS does not cause pain. But then why have I felt so bad lately?

Should I switch to either Betaseron or Rebif? What are these flu-like symptoms like? Vomiting? Will I be able to get out of bed and go to work the next day?

I'm reaching my wit's end and something needs to change. This is no way to live. I'm not the same person I was a few months ago. I used to be motivated and do little improvements around the house all the time. Now I'm exhausted by 8:00. Maybe I'm depressed? I don't even know.

[starryeyes1]

I sympathize with what you are going thru. Pain is one of the main things MS people live with. Mine came before I had my dx and I would literally tear the house apart looking for left-over pain medication prescribed to anyone in order to get some relief. Unfortunately, ignorant medical staff is a common occurance. This nurse needs to be educated about this disease and also on bedside manners! I have been on Copaxone since Aug 2009 and my inj sites itch sometimes up to a week after. My neuro said to massage anti-itch cream 24 hrs after the inj to alleviate the itch.

I struggled with depression also. At first, I was happy just to get a dx, but then reality set in and one day I started crying and couldn't stop for 10 days. I was embarrassed to call my neuro(who was in another state) and ask for help. I lost 12 lbs in a week because I just didn't care anymore. I take Wellbutrin and I feel normal again. My neuro explained that MS causes depression. Even if we wouldn't be depressed  because of having this already! We are double hit with it. Don't ignore this..
Stay strong and just know that you have friends on here that fully understand what you are going thru!

[Qrtrmoon]

Yes don't you just love when they make you come back every 3 months, then when you go in to the office the first thing the nurse asks you is "why are you here?" when you reply "uhh M.S.?"  they say "O.K. what about it?"  "well it sux for starters, I don't know why I am here, the doc told me to come back in 3 months, you guys scheduled the appt and I showed up, go ask the doc why I am here"  Then the doc finally comes in an hour after your scheduled appt smiles, says how are you doing?  You say "a lot worse than I was before I had to shower, dress, drive 20 miles sit in a waiting room in a straight back chair for an hour and deal with your idiot nurse."  Then they say "well ok stay on your meds and I will see you back in 3 months, now give us your co-pay."  "oh and by the way if you don't do this every time I tell you to, I won't refill your scripts, have a nice day, buhbye"    

[Ufrustrated2]

i'll be more than happy to hang her and skin her. pain has been a consistent "ball n chain" with me, along with the "chronically feeling bad"

the nurse where i go for the local neuro, doesn't even know why i show up there. or she is faking it just to rib me. either way, for some reason, that just bothers me.

U2

[Qrtrmoon]

Ohhh now that is a nice fantasy Quix.  Every time I go to the GP I will think of you and enjoy that fantasy from now on.  I hate my GP's nurse.  She is young and has no knowledge of MS and asks me the dumbest questions.  I know they are trained to take your info and your b/p and little else in the way of medical training, so why is it they feel the need to dole out medical info?  Especially in areas they know zip about.  At least the Neuro's nurse has a little experience in the area of MS but my GP's nurse is just clueless and yet she likes to try act like she knows something about it.  

[Quixotic1]

For me flu-like was far too strong an analogy.  I was on Avonex and initially had about 18 hours (once a week) of a little bit of aching and stiffness in my muscles and sometimes a mild headache - nothing some Tylenol wouldn't take care of.  After a few months I only had the muscle aches for about 12 hours and I took the shot in the evening so that the symptoms were gone by morning.  I slept through them and would notice them if I got up to pee.  It was just NOT a big deal for me.

Other people have had much worse side effects that never improved.

I HATE itching and cannot endure it withuot going mad!  Okay, maybe an overstatement, but I would rather feel a little flu-ish than know I would have a big itching deal everyday.  So I sympathize with you.

MS can cause depression primarily as an effect of the disease itself, not to mention the added stress of chronically feeling bad or in pain, or itching.  You may need to ask your doc about evaluating you for depression and treating.  Many of us are on antidepressants.

See the Health Page

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Depression-and-MS/show/752?cid=36

Any MS nurse that states that MS does not cause pain should be hung from her t*ts until doomsday.   Okay, we'll cut the sentence in half - she can hang by one until doomsday!   Sheesh!  Good studies show that at any given time 2/3 of MS sufferers are in significant pain.  If she was with Shared Solutions we should collect a few of the many articles on the problem of pain in MS and send them to her - though it may be hard to read while she's hanging around....

Now, if your itching is in a place other than your injection sites you should know that MS can also cause severe itching as a form a paresthesia.  This is hard to treat because it is a false nerve signal and not a histamine reaction.  It would be treated with the usual meds that they treat merve pain with.

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Paresthesias---Things-That-Go-BUZZ-in-the-Night/show/378?cid=36

You should talk to your GP or neuro as soon as possible, because something's gotta give.

{{{{{{HUGS}}}}}}

Quix

[Qrtrmoon]

I started out on the Beta Seron and had the fewest side effects of all on it.  I used it for several years until I started to have a few relapses and the doc was afraid maybe I was building up a tolerance for it and decided to go to the rebif.  I used the rebif for 2 years and just never did get use to the side effects of that one.  It seemed to make my MS pain (yes MS PAIN) more intense.  I have shooting pains from my hips to my ankles that feel as if someone sneaks up with a knife and runs it down my leg.  It is frequent and sudden and often makes me cry out and is very embarrassing when I am in the middle of the grocery store, I try to look around at other people as if trying to figure out who made that awful shriek?  I have migraines and due to severe back problems I have chronic back and neck problems.  It was almost like the Rebif targeted my weakest areas and just sort of honed in on them about 2 hours after the injection.  I also ran fevers, had chills and just felt crummy all over.  It didn't happen after every injection but frequently enough to make me dread each of them. I don't believe any of the therapies cause vomiting, by flu like symptoms they basically just mean fever, chills and body aches and just an over all feeling of YUCK.  

The Beta had very minimal side effects for me but I am sure each person is different and each medication affects us differently as do the benefits.   OH please drug company make us a pill!!!!!  

And if I could I would go slap your nurse for you, every time I hear of some medical professional saying something that ignorant it just makes the little hairs on the back of my neck stand up.  

[MsmsinFl]

I've been on Rebif 22mcg since mid-Sept 2009.  I've never had the flu-like symptoms, but get a "morning-after" headache about once a week -- not too bad.  I do premedicate with benadryl & ibuprophen (not sure if it really helps, but since I'm doing so well, I'll continue the ritual.  I'm pretty slim (5'-7, 120 lbs), and I've learned that the key to painless injections is FAT.  Spend a few minutes looking for a little fat pad -- belly & butt are best for me.  Thighs are the worst -- I have a Rx for Emla (lidocaine) which I app;y 1 hr before injection to dampen the pain a little.  And I always warm the skin & the needle before injecting, plus I put heat & massage the site after.  My Neuro didn't want me to use Copax because I have so little fat, I'd likely have site reactions.  I asked him to leave me at 22mcg Rebif (not the normal 44mcg dose) until my next MRI or until I have a relapse.  He agreed to do so, as did the Rebif folks and the neuro I consulted at Mayo -- they all said many patients stay at the lower dose if they're doing OK.   If you do start Rebif, make sure you start with the "titration" pack, to gradually get used to the meds.  Hope this helps, and that you get a med that works for you.

[meg321]

I have been on copaxone  for 8 mo. now..I know one day i seemed better  and I even said on here that it was better, then the next day it was not better.  Sometimes I can only remember symptoms i am having that day and it seems strange that I can't remember last weeks.

anyway, i am still getting lumps, itching and redness but if it will help i am willing to keep it up  because its one of the lesser of the problems I am having.

i always do this lately....

hang in there Sweetie, stay positive and it will get better !

meg

[Deb61]

Yes, MS causes pain!  I bet if I do a pole, about 100% of the people with MS would say that they have had it, or have had experience with pain.  The pain from spasticity for me is even worse with this cold snap.  

Call the neuro's office again and see if you can get into to see your doctor.  Site reactions are very common with Copaxone (especially in the beginning), but what you're describing seems much more severe.  Is it an all over itching?  If so, you may be allergic to it.  I have had a little itching with Copaxone, but mostly the burning was bad (which went away within a few minutes) when I first was on Copaxone.  I have even had huge bumps in the first few months, but never an all over itch.  But, yes, it's different for everyone.  

Depression is very common in MS, too.  You need to bring this up with your neuro as well.  

I hope things get better for you soon.  
Take care,
Deb

[HVAC]

There are things a Doctor can prescribe for the skin reactions. I have heard of anti histimines and or liticaine cremes in extreme cases. Taliking to your regular doctor or Neurologist is your best bet. I can't remember how long it took my body to get used to the Copaxone. Besides the stinging at the time of injection I hardly notice it. Everyone is different.

[essdipity]

I'm so sorry you're feeling this way. I was on Copaxone for 2 months before I had to quit because of hives, bruising, lumps, rashes and general misery. Nearly everyone on Copax gets some of these symptoms, so it's a matter of degree. Most people say it gets better, but I got worse and worse. I am truly allergic to it and you may be too.

That nurse is clueless. MS does cause pain in most patients, and that is well documented. You sound quite depressed as well, and I think you need to see a doctor about possible medication. There's no justification for letting you suffer when help is available.

I've been on Avonex now for a year and a half. I still get a nasty reaction, but I pre-medicate with Aleve, and sleep through it very well. Maybe you should talk the whole thing over with your neuro, and maybe you should find a new neuro altogether.

Thinking of you,
ess

[Charley123]

According to the MS society, MS can cause pain. Please read, http://www.mssociety.org.uk/about_ms/symptoms/pain_and_sensory_symptoms/causes_of_pain_i.html

I personally have pain and so do many other MS people that I know personally.  Are you working with Shared Solutions to get your Copaxone? I've been on Copaxone for a few months and call them and the pharmacy on a regular basis when symptoms show up that I can't deal with.  They are great.

Have you been to a rheumatologist?  There are inflammatory diseases that often come with ms that also produce pain.  

There could be some other explanation for the pain other than MS.  Montel Williams has had pain from his MS that is quite unbearable at times.
Here's quote from his site:

This question was asked Montel by someone with MS.  His answer is too long to put in this post.  I've put in a link to the site where I got this.

Montel, during the recent Larry King show that focused on MS, you mentioned that you experience constant leg pain. I have progressive relapsing MS, which has progressed very rapidly. Like you, I have constant leg pain from my feet, all the way up to my hips, so severe that it interferes with my ability to sleep at night. I would like to know what you have found most helpful to deal with this pain. My situation is complicated by the fact that I am experiencing cognitive problems and severe fatigue problems, so my doctor does not want to compound those problems, yet is trying to find me some relief from the pain, so I can at least sleep through the night. Anything that you have found helpful with your neurological pain would be much appreciated.

http://www.medicinenet.com/script/main/art.asp?articlekey=53785&page=2

We all understand the frustration and depression that comes with MS.  We know what it's like to be at wit's end.  

Itching and burning could be a side effect of Copaxone or it could be MS.  Are you itching and burning at the injection site?  If so, it might be the Copaxone.  Get that checked out.

I don't understand why the nurse told you there was no pain with MS.  Could you call her and ask her why she said that?

Sending hugs to you, Charley