Anyone done ACTHAR?
 

I am in another flare right now. Which really makes me want to STOP taking this stupid DMD because I don't feel I should flare all the time on a DMD, but whatever I'll keep it up....

So I am dealing with numbness in my usual places but on top of the usual, yesterday the numbness had extended from my hip to shoulder on the right side of my abdomen and that's new, then today for the first time ever, I experienced the bowel dysfunction :eek:

I am not cool or okay with this. AT ALL. And I am going to be honest, I really want to cry right now, but I am NOT going to. I feel like my MS is just eating me alive.

So since my doctor knows I hate drugs and it's like pulling teeth to get me on them, they came up with a different solution vs. solu-medral/prednisone taper.

They are putting me on an inject-able drug called "Acthar".

Have any of you tried this drug? I am very scared. But she said I won't have to worry about thrush, the manic moods, blood sugar fluctuating, and all the other negatives to prednisone/solu-medral.

I just want to be normal again. I don't like the 'new normal'. But I am just going to stay as positive as I can..

Thanks.

I have not used ACTH.

ACTH has been used since 1978, it's not a new drug but has been used for many years to treat exacerbations. IVSM is the main choice any more for exacerbations but I have read of others who have gone the ACTH route with success.

ACTH and oral prednisone were my only options when I was dx'd in 1985. At that time my neuro only used ACTH for progressive types of MS or those who were not helped by oral prednisone.

Some information about ACTH:
http://www.nationalmssociety.org/abo...cth/index.aspx

I thought I was getting ACTH in 93, when I was having my end of my loverly remission, exacerbation from hell. But Neuro gave me the newer kid on the block..Solumedrol IV.

I was kind of disappointed, as I had heard good things about ACTH. I often wondered if, when the IVSM stopped working for me, if the ACTH may have done better.:confused:

Let us know how it goes, please and good wishes..:)

Amy,

It was the best medication that I have ever used to resolve an exacerbation.

It worked so much faster and better than solumedrol.

If given a choice between all medications to stop an exacerbation, it would be my first choice.

The amazing thing is that it is easy to use and worked very fast (two days). At the time of my exacerbation I had the same problems that you are experiencing, with the additional problem of not being able to walk all of a sudden. But two days later, after using Acthar, I was physiologically back to normal.

-Vic

Acthar is the 'new' brand name drug that is ACTH which pre-dates IVSM. It does work better for some people, but it is very expensive. It might be a problem to get Insurance to cover it unless IVSM has been tried first and failed.

thank you everyone!
 

I really appreciate all the feedback, because drugs scare me, and none of my fellow ms-ers in town have even heard of the drug. I am definitely more comfortable with it now, but the nurse still hasn't called me to set up pick up and tutorial on the injection, so I am not sure what's going on. it seems we have alot of flaws in our medical system here, so I will probably have to call back Monday to remind them they were doing so.

Again, Thank you soooo much everyone!

:grouphug:

I took it a few months ago. One 5mL bottle. 1mL per day for 5 days was dose but .6 - .7 ws all I could fit in my modified Copaxone auto injector that I use for weekly testosterone shots so it took 8? days. It shouldn't matter cause it's long lasting. Did it help more then IVSM? I doubt it AND the cost for that 5mL bottle is $25,000! I won't do it again since IVSM is so much cheaper to insurance with same results, for me anyway.

Neuro told me it works by stimulating gland to produce more of whatever where as IVSM suppresses production, just like testosterone I take slows my teste's production. Your body knows levels and trys to adjust.

Salt intake must be cut to a minimum. I can't stress this enough. I eat quite healthy and boy was my mouth dry (started Dry Mouth thread) and still is during the night. Increases appetite which i'm cool with because I exercise all I can and muscles like fuel.

I'm still losing feeling on a weekly basis and i'm on Ty with occasional Copaxone shots. Sucks. I feel (or don't) your pain.

Wow. $25,000 is ALOT of money :(

I still haven't heard anything from my doctor. I really don't want to treat this flare, and try and come out of it naturally, maybe eating alot of natural anti-inflammatory foods? I just hate doing drugs, they turn me into a horrible person, and then takes quite some time after I'm off the drug to get back to normal. This flare is definitely getting worse though so I am not sure if the no drug route is even an option. Everyday I am more and more numb. It seems the numbness is spreading and water from the shower is a horrible sensation right now.

GRRRR to MS. :mad:

Here is the good news about the price:

You can have your neurologist negotiate the price down for you. My neurologist did (and said it was a common practice to do so). My cost was $500, and that was without insurance. After further negotiations because of my lack of insurance at the time, the absolute final price was only $250. Furthermore, I know others who have reported even lower out-of-pocket costs.

Try the negotiations route.

-Vic

Thanks for that advice! I didn't know negotiating prices was even an option! :) I was called by the man from the acthar company today so I believe I am in the process of getting registered. I'm still really not looking forward to this, I hate what steroids do to my body.

ACTH shots
 

Hi anna dee

I was wondering did you start yet and if so how is it going. Please let us know.

good luck
laurie f

Thanks for sharing your experiences/checking in with me! You guys are the best! :grouphug:

I got my acthar today, and have a nurse coming over this afternoon to show me how to take the injections.

I have never been so excited to get on pharm drugs, but this flare has just spiraled out of control. I'd say 85% of my body is numb, having difficulties walking (must go very slow, dig my toes into the floor as I walk, and hold the walls), in the last two days I have developed some goofy cognitive issues. Bad because I was giving back the wrong amount of change at work, sending people to one room then sending their time to another. On top of that everything in my body hurts SO bad right now, and all of my muscles feel so tight, cramped, and constricted.

Yesterday while I was working, I started feeling really funny, then my peripheral vision cut out, so I walked to the front of the store to cool down and had to book it to the bathroom, got sick, then they made me go home.

I have today/tomorrow off, but I am actually considering having people cover saturday/sunday shifts for me. I am thinking I shouldn't be working right now, at least that's definitely what my body is SCREAMING at me.

MS honestly makes me want to cry sometimes. It just gets to be way too many problems all at once, it's overwhelming. Sometimes I wonder, if my insides feel this aged at the age of 23 what am I going to feel like when I am 33?! :eek: scary stuff.

Thanks again everyone! :grouphug:

:circlelove: (((((AynaDee))))) :circlelove:

You make my heart smile SallyC! :) :hug:

I just finished with the nurse and have officially taken 1 of 5 shots of acthar.
The shot was PAINLESS. So different than that nasty Rebif.
I'm sure I'll still have the common side effects that synthetic steroids have, but I'll deal, I have a good feeling about this drug.

The nurse said she's handled multiple MS cases in the past.
She said I was the youngest and most symptomatic out of all her MS patients (which kind of makes me sad a little bit), but I was by far the most educated of all patients, AND she said she was leaving my house with more knowledge than when she had first got there. That definitely makes me happy. :)

Thanks again everyone! I'll keep you all posted on how I react with this drug.

AnyaDee, Hope it works for you and quickly. :hug:

Results already?!..... I think yes, friends! :)
 

So after 6 hours into the first shot of Acthar, my gait was better, I was walking withOUT the walls and withOUT digging my toes into the floor.

:)

My blood sugar has been fluctuating. But I have been monitoring what I am eating to keep that minimal.

I have never been so excited about pharm drugs. I think that is because I am getting results, and quickly.

I still am having cognitive issues and the numbness is still all over, but the back muscle spasticity has calmed down immensely! I can move freely today!!! WOOOOO! :Head-Spin:

I have decided to stay in bed for the next five days to not reverse whatever the drug is fixing for me, so I am doing very minimal daily activities until I know it's kicked all the way into high gear..

I will continue to keep you all posted! Thanks everyone!!! :grouphug:

Ayna, I have been searching for info on this drug as I just got home from seeing my neuro. I was in the hospital for the IVSM (necessary because of diabetes) for 3 days before Easter. My neuro said he didn't want me to have to go back into the hospital because of the risk of getting an infection.

He is right as I was in the middle of a floor of very sick patients some of whom got sent to ICU the last day I was there. My immune system was compromised after being on Avonex for 9 months. From the info I have gathered ACTHAR appears to be a safe and effective treatment.

How are you doing now? Are you on it for 5 days once a month and have you improved while on it? I am in a very progressive exacerbation at the moment and the IVSM didn't seem to help me this time around. This is my second relapse since August of last year. Thanks for any info you can give that will help me in making a decision.

The doc is going forward but it will depend on my insurance coverage as I cannot afford the price of this medication without help.

Gabriella

((((Gabriella))))

I'm so sorry to hear of your situation! I am very glad your doctor chose for you to stay out of the hospital per getting an infection, I feel that would be something my doctor wouldn't even think about.

The Acthar Gel did work some. Not as much as what the IVSM does, but it did help.

It either did not get me 100% out of a flare, I had residual damage, or my MS is just progressing out of control because I, again, am having issues.

After 6 hours of having taken the shot, my spasticity had calmed down immensely and I was able to walk without holding the walls and digging my toes into the floor. I was numb for two weeks after the shot but I noticed everyday I was a lil less numb than the day before. It seems it took a lil longer for it to kick in, but it did not have AS MANY negative side effects as the steroids. Still had to watch what I ate so I didn't swell up or get high blood sugar, goofy moods but not near as bad as the steroids (I end up hulking out while I'm on steroids and everyone in my life at that time hates me, along with myself, lol).

I do not have insurance, so I was sent an application for an assistance program for Acthar Gel, it's $25,000 per vial, they covered 100%. So definitely check into that.

I hope this helps some and you get to feeling better!

Thanks for the Quick Reply!
 

Ayna, I feel better now that I know some financial help is available if my 2 insurances don't cover total cost. My last neuro wanted me on IVIG but the insurance would not cover the cost since it is not actually FDA approved for MS. I believe the cost was going to be $10,000 a day to treat. Only a rich person could pay for that.

I found an article on the NMSS site and it is approved by FDA for MS so I am relieved for that information. I've had MS for well over 30 years but it was not diagnosed until I was already in the progressive/relapsing stage. The new neuro calls it SPMS but I don't really care what it is called, just make me better!

Are you heat sensitive? I live in the deep south so the summers are murder and I basically stay in a room with AC set at 68.

Blessings,
Gabriella

I am very glad to hear that that takes a weight off your chest.
It's crazy that they price our medicine the way they do, I honestly feel my neurologist wouldn't even be able to afford the costs of this disease. It's whack.

Heat sensitive-absolutely. It sucks very bad too. I live in IL and our summers are so hot and HUMID, it kills me. So in the summer time I can't go outside, as soon as I do the symptoms start and only continue to grow. and it usually ends up having to have a 5 day IVSM treatment followed with 3 week prednisone taper. I hate it because I am trapped inside for a whole season and don't get to partake in the fun summer activities. Another thing for MS to rob me of.

It has taken me forever to get back to posting as I found out I also have myasthenia gravis. The neuro ordered blood work while I was in the hospital for the IVSM and the test for MG came back really high with 0-17 being in the normal range for the antibodies test and mine was 77.

So I am getting the IVIG and the insurance coverage will cover the cost! IVIG is officially the treatment for MG. Isn't this a wonderful outcome for treating both the MS and the MG. I can't believe the cost for the IVIG is $10,000 a vial and I will be having it for 5 days straight.

I actually started it today along with some solu-medrol and benydryl in the mix. Maybe I will start to feel like a human being again soon. It makes the next five days as an outpatient staying at the Infusion Center all day a treat. My husband is driving me as my legs are so weak I don't trust myself to drive at the moment.

Gabriella

I am very sorry to hear of the MG. But at least the insurance will cover that vial! That is rare, yet amazing! solu-medrol makes me crazy, but it does get me back on my feet pretty quick like. It just destroys my appearance and emotions, lol.

Hang in there dear! and thanks for the update! :hug: