Feeling frustrated

[Needhelp16]

So yesterday was suppose to be the start of my 3rd week on copaxone...suppose to be.  Mid afternoon I noticed a horrible rash on my right arm after I went to scratch it.  It's the same kind of rash that I have on my right shin that I got not even a week after I started the copaxone.  Coincidence Idk.

I called shared solutions and talked to a nurse.  He advised not taking another shot until I talked to my neuro.  I called my neuro and he said to skip the shot last night and if the rash was no better today to go see my pcp.  Unfortunately the rash wasn't any better when I got up this morning.

My pcp gave me a steroid cream and pill and said not to do my shots all weekend.  I haven't been in the woods, no new laundry detergent or no new body soap, etc.  She thinks it very well may be a reaction to the copaxone.

This really worries me.  The whole reason I started the copaxone is because I have 2 small kids and I'm a stay at home mom.  I can't afford to get the flu like symptoms that the other dmds have as side effects.  I just don't even know what to think!

Here's 2 questions.  Has anyone experienced a rash not at the injection site with copaxone and how will I know if it is the copaxone if I'm taking steroids? Maybe I should wait to start the steroids until after this weekend.  **sighs**

One good thing about my apt was my pcp gave me a script for a muscle relaxer because of all my back, shoulder, and neck problems.  I pick it up tomorrow and hopefully I'll finally get some sleep!

Anyway, thanks in advance for any comments and thoughts.  Hope you all have a great weekend!

Laura

[Needhelp16]

Thanks Guitar grrrl!   I'm still hoping that I can stay on the copaxone but only time will tell.  

It seems like every day I'm getting a new symptom and that is adding to my frustrations.  I just wish I could be cut some slack, as I'm sure everyone on this forum does!  ;)

[Needhelp16]

Thanks Lulu!  Last week was pretty tough for me.    I had/have extreme fatigue, the problems with my legs, numbness and tingling I've gotten used to, but the back, neck, and shoulder problems are the worst.  I've been feeling like an inadequate mom and wife and am just anxious to feel better.  Thank you for the support though!

[Guitar_grrrl]

Hi!

In the short time I took Rebif, the titration pack and subsequent shots had (to me) minor flu issues that went away by the end of the 2nd month.  I took my shots at night just before bed.  I took some Ibuprofen with it, and if I felt at all icky in the morning (rare), I took a little more Ibuprofen, and from there, I was good to go.

Of course, YRMV.

[Lulu54]

Don't despair.  The delay in the copaxone is for the best right now.  I've been on it for almost 3 years and have not experienced the rash, but many others here have had an assortment of problems.  If copaxone doesn't work, the others are also an option.  

Yes, they talk about the flu-like side effects, but most everyone here on Rebif, Avonex or Betaseron has figured a way to deal with those symptoms.  These include doing the injection before bed and taking ibuprofen or other over the counter pills to help with the symptoms.  Almost everyone talks about their body adjusting quickly to this drug and getting into the rhythm.

Here's hoping your legs get stronger and you have a good appt next week to discuss all of this.
Lulu

[Needhelp16]

Just an update- I talked to my neuro today and he doesn't want me to start my shots again until the rash is completely gone.  I'm frustrated because I feel like I've barely been on the shot and since it takes 6-9 mos to start working I feel like I'm going backwards instead of forwards.  **sighs**

Today I also had problems with my legs again feeling weak and shaky.  My next appt is in a week I just hope my legs don't get any worse before then!

[HVAC]

Sorry for your troubles. I would keep in close contact with your Neurologist and do what they say.

Alex

[Needhelp16]

Alex- the rashes are no where near the injection sites.  Shared Solutions said that in the clinical trials 18% of people had rashes unrelated to the injection sites, but 11% of the 18 were actually on the placebo.  

The rash I have looks like poison ivy, but I promise I was no where near poison ivy and the rash on my shin I've had for 2 weeks.  When I scratched the rash on my arm the skin on the raised bumps came off.

Idk, I'm just really hoping its not from the copaxone.  Last night both legs felt like jello so I laid down.  My left leg felt like it was shaking internally.  My husband rubbed it and said I had dozens of little knots.  After he rubbed it for a hour it was completely numb and like a dead weight.  Today I've literally slept all day.  I just want to feel better!  :(

[HVAC]

Usually at some point in the first month the injection sites will blow up. I think it was my 8th shot. All my sites turned to itchy plum size area. I am not sure if that is what you mean. The body decides Copaxone is a foreign substance. With many of us it goes away but itches like mad for a few days. If it is some other kind of rash I do not know what to say. Shared Solutions will say little about it. It is best to follow your Neurologists advise.

Alex

[Doll555]

I was on betasaron and I only remember one day of feeling flu like symptoms but it wasn't bad enough to prevent me from working the full day. You may be one of the lucky ones that don't have the flu symptoms. I can't speak for the other medicines, I have only tried betasaron, ivig and am currently trying Copaxone. I have not had a rash but do seem itchier. Good luck