[jowen214]

If you read my other post, you saw that I'm in a flare (had another from last October-December) and can't do IVSM...had a bad reaction to it. I've tried oral steroids, but they don't help. This time, my neuro has recommended we try acthar gel. The only things I know are that it's OUTRAGEOUSLY expensive and it's injectible.

Has anyone used this to treat a flare? Are the shots IM or sub-q? Side effects?

Thanks!

[nemsmom]

Originally Posted by jowen214

If you read my other post, you saw that I'm in a flare (had another from last October-December) and can't do IVSM...had a bad reaction to it. I've tried oral steroids, but they don't help. This time, my neuro has recommended we try acthar gel. The only things I know are that it's OUTRAGEOUSLY expensive and it's injectible.

Has anyone used this to treat a flare? Are the shots IM or sub-q? Side effects?

Thanks!

I had never heard of this before, so I googled it.

http://www.acthar.com/

This is what I found. It looks like it's at least worth talking over with your doctor. I am interested in it as well, I also can not take IV steroids, actually any steroids. I will have to ask my doctor if this would have the same kind of effect on me and if not if it would be something we could try.

I have been thinking I'm in the middle of another flare as well but have been putting off talking to my neuro because at this point I feel like all he can do is help me manage my symptoms (which he has been very good at so far). But I suppose I really should at least let him know what's going on.

Good luck, I hope, if this isn't what you and your doctor decide to use, that you find something that will help in a flare. Please let me know.

Kristie

[Lady]

Hi Jennifer,
I am not sure about the drug. I know they use Acthrel (corticorelin ovine triflutate) for intravenous injection, only for testing.

Do you have Cushing's syndrome from all the steroids? They use this drug as a diagnostic tool only. They use it to test you.

Maybe I am thinking of another drug than you are.

Some people can't take steroids because they get Cushing's Syndrome, or the disease. Gain weight, red in the face, chest and neck. They get a hump-like pad of fat on their top back. Their cortisol level is too high, so they test you for this.

That's the only one I can think of. Maybe there is a treatment with a similar sounding drug name I am not aware, someone might know about it. Sorry I can't help you. Good luck to you.

[jowen214]

Originally Posted by nemsmom

I had never heard of this before, so I googled it.

http://www.acthar.com/

This is what I found. It looks like it's at least worth talking over with your doctor. I am interested in it as well, I also can not take IV steroids, actually any steroids. I will have to ask my doctor if this would have the same kind of effect on me and if not if it would be something we could try.

I have been thinking I'm in the middle of another flare as well but have been putting off talking to my neuro because at this point I feel like all he can do is help me manage my symptoms (which he has been very good at so far). But I suppose I really should at least let him know what's going on.

Good luck, I hope, if this isn't what you and your doctor decide to use, that you find something that will help in a flare. Please let me know.

Kristie

Thanks, Kristie. That is the drug. I was wondering if anyone here has tried it. The nurse at my neuro's office was supposed to send in the paperwork Thursday after I left. I'm just waiting for it to be delivered. I'll do my best to remember to post how I react to it. Maybe you should talk to your doctor about it!

Originally Posted by Lady

Hi Jennifer,
I am not sure about the drug. I know they use Acthrel (corticorelin ovine triflutate) for intravenous injection, only for testing.

Do you have Cushing's syndrome from all the steroids? They use this drug as a diagnostic tool only. They use it to test you.

Maybe I am thinking of another drug than you are.

Some people can't take steroids because they get Cushing's Syndrome, or the disease. Gain weight, red in the face, chest and neck. They get a hump-like pad of fat on their top back. Their cortisol level is too high, so they test you for this.

That's the only one I can think of. Maybe there is a treatment with a similar sounding drug name I am not aware, someone might know about it. Sorry I can't help you. Good luck to you.

Thanks for responding, Lady, but the drug is acthar. The website Nemsmom posted has the general info about it. I was wondering if anyone here had used it instead of a steroid. I can't do the IVSM b/c I had such a bad reaction to it....felt like an elephant sitting on my chest, my heart beating so fast it felt like it was about to jump out of my chest, almost passed out, and broke out into a clammy sweat. Ack! It was terrible. We've tried the oral steroids, but they just haven't helped.

[Lady]

Yes, I remember years ago they used ACTH for MS relapses before the synthetic ones became available.

This link answers both types of steroids.


"Is there anything that can be done for relapses in MS?"

http://www.mult-sclerosis.org/steroidtreatments.html

I hope it works well for you. Good luck

[gonnamakeit]

When I was first diagnosed and in really bad shape I was given ACTH. It helped at the time and I was using it about every 3 months.

Later when I had turned SPMS it no longer did a thing for me and I haven't used it since 1987.

There are side affects with this drug such as acne, water retention, mood disorders and scaling skin. If you are in bad shape it is probably worth your trouble to use it and see if it helps you.

I also have osteoporosis now which may be from using the steroid too many times, so you need to choose your poison as wisely as possible.

gmi

[EddieF]

I got a shot of this yesterday & paperwork started for 5 more injections. Even the daily 15 laps + 1.2 miles in chair aren't stopping progression. Hope this helps. I went for IVSM but agreed to this since it boosts not surpresses production like ivsm. I found a shot of copaxone in fridge & took 1/2. Spasms in left thumb/index finger have only happened 2x since.

[Victor H]

I used it several years ago and loved the results.

It is a simple IM application and in my experience, IM's are easier than SQ's.

Ask your neurologist if he can cut a deal with the drug maker on your behalf.

-Vic

[Dejibo]

I too had a wild ride on the last steroid train, and thought I was sunk if I had a big exacerabtion. Thanks for the info! If you are a cash patient, you can generally contact the manufacturer and get a cash break. Also PPA and other programs may help.

[EddieF]

ARE THEY OUTTA THEIR FN MIND??? I don't even want to fight my insurance to pay because it's a rip-off!! What the heck is this drug made of? I know drugs made from human cells that don't cost a FRACTION of this!!!

I'm po'd. Breathe..happy trees..breathe... Not working! This is criminal.