[sassy]

I have IPIRs (immediate post-injection reactions) from Copaxone. Mine aren't the usual ones they talk about, mine are severe, severe pain in my lower back, neck and head. They last about 10 minutes then subside but not entirely. I feel the soreness especially in my lower back for the rest of the day.

I had one about a year ago, then one in August, then December, February, March and now I have had 2 in April. Well, called neurologist like a good girl and told the office staff. MA called back and neurologist wants me to come in and talk to her. Tomorrow at 2:00. Dang, this is the same neuro I had to wait 6 months to see before dx so when she fits me in I know she really wants to talk.

I am not to take another Copaxone shot until we talk. And MA said I might want to do some research on Avonex and Tysabri. I don't think Tysabri is even an option because I have had melanoma skin cancer. And Avonex--ugh, I had a terrible time on Rebif, I was severely depressed, deep dark hole kind of thing so wondering about Avonex, same formula right?

Anyone have history of Rebif then Avonex or visa versa? Not looking forward to trying something else. I have done pretty good on Copaxone with just a few exacerbations in the last 3 years.

I had no real quality of life on Rebif, I was depressed and seemed to have constant flu symptoms...fever, headache, aches and pains.

Darn, this disease! I hate it, I hate the decisions it makes us make, I hate the demolition it does to our body.

Ah well...this too will resolve itself somehow.

[Girlie Girl]

Sassy, so sorry to hear that you are having problems! At least the doc wants to see you and is not putting you off.

I was on Avonex and went to Rebif. Love rebif! Avonex I had the horrible flu symptoms after the shot. Rebif is not so bad. I have done so well on rebif also. I am in a flare now but it is my first major one since I started rebif over a year ago. I have had no depression sx with either, so I can't help you out there. I only have the flu, achy body side affects.

I was also told NO to tysabri because I had melanoma last year, so that is most likely a no for you. If doc is trying to sell you on it I would say no because of your previous history with melanoma.

Good luck tomorrow! Keep us posted!

[sassy]

GG, you did help me! You have a history with both Avonex and Rebif and one is better than the other for you so maybe I have a chance with Avonex even tho Rebif didn't work for me.

I may bring up LDN to neuro tomorrow too. I know it isn't a disease modifier but supposed to make you feel better and maybe that is what I will need with another DMD.

I'm too old for most of the research studies being done now a days but might have to go looking again to see if something new is out there.

[tovaxin_lab_rat]

Oh Sassy, I am so sorry you have still having those darn IPIRs....I am glad that the doc is seeing you ASAP...nothing to fool around with.

I know that some people have done well switching to Rebif from Avonex...but they are the same drug...just different doses...Rebif is sub q injection 3 times a week as opposed to the IM Avonex once a week...so maybe with it being sub q you will tolerate it better...

Betaseron might be an option as well. It's a different formulation of an interferon...sub q injection every other day...something to consider.

Having talked to the research doc about the melanoma issue and Tysabri...it's your decision. I know that a lot of people are panicking about it...but it's just like PML...and I am not going to go into it here as I am not on it and it's no use in me even having this discussion with you. Do your own research Sassy...

Good luck with your appt tomorrow.

[Bannet]

Sass This stinks.

I was on Avonex for 1 year. although everyone is different I was sick 5 out of 7 days every week.

Achy flu like symptoms and major depression. I was then put on copaxone with no real sideeffects.

See what the doctor says. Everyone reacts differently to the meds.

Good luck tomorrow. Keep us posted.

[Koala77]

I'm so very sorry to hear about your reactions sassy.

I had something similar with Copaxone. I then got site reactions so bad that not only did I have a painful red tummy, but I developed blisters as big as golf balls (full of luid) hanging from every available bit of skin on my abdomen.

I then proceeded to fit. Needless to say, I don't take Copaxone any more, and as I reacted to Interferon as well, I don't take any of the DMDs.

I recently had most of my nose removed, and then rebuilt, because of an infiltrating basal cell carcinoma . I know that's not the same as a melanoma, but I have a feeling that with my history of the skin cancer as well as drug reactions, most neuros would be reluctant to order me Tysabri.

I do hope I didn't worry you with my own reactions. I think I must be weird when it comes to medications, as few people seem have to sort of drug reactions that I get.

I wish you the best of luck tomorrow.

[greta]

Like Girlie Girl, I went from A to R. No depression on either for me.

If it were me, I wouldn't try A. Bottom line is that A and R are the same type of interferon. If R induced severe depression, I would think that A would cause it too.

I hope the doc can give you some good answers/ideas.

[AfterMyNap]

Dang, Sassy, still? That's too bad, but I'm glad they told you to stop. When my doc took me off B after a wild depression, she said that I'm officially one of the "no interferons b" ever again club. That's when I went on C.

As you know, I've been off all DMDs since last July and have not noticed any changes (remember, I was promoted to SP last year).

We did talk about TY, but I'm not so sure about that one. LDN might be a viable option but I'm kind of in a holding pattern to see how I do. I honestly don't see a difference.

I hope you'll find the next best thing for you. Keep us posted.

[SandyC]

Sassy, it's different for everyone. Jim originally took Beta, then Copax, then Avonex. He is now back to Beta and does just fine on it. Avonex just about wiped him out every shot. He would be down for days with fevers. Copax just didn't seem to be working. On Beta he has leg cramps the next day but nothing Ibuprofen can't handle. The only draw back is remembering to take a shot every other day. His neuro refuses to put him on any of the newer drugs since his reaction to Avonex was so rough. BUT, with that being said, after taking Avonex he only had one active lesion. So, in our opinion it was working and doing it's job. We are hoping for the same outcome with Beta since he tolerates it the best.

Cindy brought up a good point. Jim has experienced depression with Beta. He's now on Zoloft and doing fine.

[FinLady]

Sassy, sorry to hear you had so many IPIRs. Hope you and the neuro can find a med that agrees with you.