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