med problem
 

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.

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!

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.

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. :hug:

Sass:hug: 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.

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.

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.

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.:hug:

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.

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

Thanks guys! A couple more hours to go 'til my appt.

Cindy, I remember when I went off Rebif my neuro said no more interferons. So, I plan to remind her of that and see what might have changed her mind.

Cheryl, the melanoma was a scary, scary time for me and I don't know if I can go through the worry. I am going to ask my neuro what she has heard about the melanoma risk with Tysabri.

My mind is thinking a hiatus from everything might just be nice.

Good luck my sassy friend. Let us know what the doc says:hug:

Well...no changes at this time. We both agreed to try to continue the Copaxone. She admits, as does Shared Solutions, that they have no answer to what causes this and I am the exception to the rule.

I decided I was willing to take my chances with Copaxone. She offered some meds to pretreat before the injection each day to maybe stop the spasms or pain but since they don't happen everyday I opted to just go with what I do now and hope for the best.

She is going to check into the Tysabri with my melanoma history and I have a 1 month follow-up appt to see how things are going then.

She did say she is not willing at this time to retry any interferons and I totally agree with her. And she also would not like me to be totally off DMDs.

I totally forgot to ask about LDN. Didn't take any notes with me so plan to do that next month!

The worst part of the visit? I had gained 3 lbs since March 17th visit! Ugh! I blamed that on my breakfast, coffee and lunch with Bannet last week! And that was well worth it!

So, guess still the same here and will see how it goes.

The couple of IPIRs that I had were also not typical. Before I could even get the used needle on the table, I felt like someone smacked with me a car. right in my back! it was like my body was a thick sheet of ice, and that ice layer cracked right through. it was awful!

My first one lasted for 2 minutes. I felt my heart slamming, and my back hurt so much that I almost couldnt draw air in.

The second one was the same way, but it was my breast bone. then it spread across my ribs. it lasted less than 2 minutes.

my third was my lower back across my hips. it was wild the way it cut right to the bone.

I was pulled off of it for 2 days, and a stress test showed no cardiac issues. it took a few days for the soreness to subside.

I failed at the interferons, so copaxone is kinda my last hope. I cant do LDN because of other meds I take, and no Ty since its interferon family. My liver isnt happy with interferons. So, for now I cling to copaxone.

I just remembered something Sassy. When Jim was on Copax the neuro prescribed prednisone pills to help ease his shot reactions.

You gained three pounds? Hmmm, I am meeting Cindy and Beth in a couple of weeks. Great, I just lost three pounds. lol

I had another one of the dang reactions this morning. I swear, I don't know what to do...

Sandy, I have to tell you when Beth, Cindy and I spent a day together we went to breakfast at Starbuck's, pre-lunch at an ice cream parlor, lunch at a Mexican place and then back to Starbuck's for a sugary great tasting drink. And with all the laughing I did I think I lost a pound instead of gaining.

And besides that the waiter at the Mexican restaurant followed us (Cindy) to Starbuck's and I have the pic to prove it!

Oh man, what have I gotten Jim and I into? Sassy, you sure you can't come? I would love to meet you.

I would love to be there! I just can't do it and leave my grandbaby!

I know, maybe next time. Grandbabies take priority.

Ty is an interferon?!
 

Dejibo - since when is Tysabri considered in the interferon family? That's news to me. Ty can have an affect on the liver - but not guaranteed - whereas, usually if your liver has problems with one interferon, all three would be ruled out. However, from what I've been told, that isn't the case with Tysabri. If you're interested in Ty, then I suggest talking with your neuro (or another neuro) about this!

Good luck.

Well, neuro office called. She wants me to go to a dermatologist and be checked for any suspicious moles. If nothing suspicious she feels I can go on Tysabri.

Tomorrow I go to my PCP for a consult on bloodwork I had done, cholesterol and glucose. So, looks like I'll be adding one more med to my way too many now.

I don't know if I can get past the scare of the melanoma even if they decide it will be somewhat safe. When I had melanoma diagnosed it was a terrible, terrible time in my life. It's an awful feeling to know you have a cancer that can travel and has very few options for a cure.

I don't know if I can face that once again. But I don't want to face progression of my MS either.

They can't get another DMD on the market soon enough for me!

Thanks for listening. I want a quiet, stressless, healthy life! Grrr....

:hug: Sassy :hug:

:hug:Sassy:hug: I will be thinking about you today and saying a prayer that your doc will give you good news. Please keep us posted.

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Sassy good luck today. You will get some relief soon! Good things always come to those who wait! :hug:

Well, today's appt went great. Cholesterol and glucose both at good levels. I was a little freaked that she needed to see me but I forgot she just likes to talk about good things once in awhile. :)

She gave me a referral to a dermatologist, my insurance requires that. I have an appointment with him for next Thursday.

Thanks all for your well wishes, hugs and prayers.

I'm so sorry that Copaxone is not working for you..:(

I understand your fears in taking a chance with Tysabri and wish you well with your derma outcome and decision..:hug::hug:

I'm sorry to hear about your problem with Copaxone Sassy! Darn it anyway! :hug:

If you decide on an interferon, you'll probably for sure need to take an antidepressant if you don't already. I didn't start on one until I started taking Rebif but I should have taken one sooner I think.

I felt better on Avonex than I did on Rebif myself. When I switched to the higher dose of Rebif my depression got a lot worse.

Good luck with whatever choose! :hug: