Seriously, a New Medication! No Jokes th... - My MSAA Community

My MSAA Community

9,432 members21,216 posts

Seriously, a New Medication! No Jokes this time, just good news for some of us.

MaggieT1 profile image
21 Replies

I was in a Research Study that ended over 6 months ago so I am allowed to talk about it now! It was for a time released version of Baclofen. Baclofen ER, 80 mg at bedtime changed my life, I didn't have 1muscle cramp or any spasms the whole time I was on it. I was told it was in it's final stage before FDA approval...

Written by
MaggieT1 profile image
MaggieT1
To view profiles and participate in discussions please or .
Read more about...
21 Replies
jimeka profile image
jimeka

So it hasn’t been approved yet?

MaggieT1 profile image
MaggieT1 in reply tojimeka

Last I heard was that it was in the final stages and we should expect to see it in the pharmacy within another year.

kdali profile image
kdali

Fantastic! 🎉 Thank you for your participation in the study and for sharing the good news with us 🤗

rjoneslaw profile image
rjoneslaw

Where did you do the study? How long was the study? Who referred you to the study?

MaggieT1 profile image
MaggieT1 in reply torjoneslaw

Wow, are you going to waterboard me next? Seriously if you don't believe me all you have to do is ask nicely and I'll give you the information. I found out about the study when I saw an add in the "Albuquerque Journal" which is the one major newspaper for the area I live in. The study was conducted by Lovelace Scientific Research also in Albuquerque, NM. I did not start the trial at Day 1 and therefore do not remember the length of the trial; I was lucky enough to be in the trial for approximately 16 months.

If you would like further information please feel free to verify that this medication exists and is still in the trial period by typing it into Google or Yahoo and following which ever lead you feel is best.

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply toMaggieT1

MaggieT1 I don't think rjoneslaw meant to waterboard you. I want to thank you for your participation in the study and sharing the information. I believe all of us are anxious to find out information that may be helpful to us personally and to our friends here on this forum. I'm very interested personally because I'm taking 10mg tablets, 2 at a time up to 8 a day, combined with my other symptomatic meds, it seems like my phone is tweeting, chirping, quacking at me every few hours to take one medication or another. Time released Baclofen would be awesome for me and so many others with spasticity issues. I have tried to sign up for many drug trials and will keep trying, but I get turned down as soon as I put my age in. Very frustrating for me. Up until 2 years ago, I was long distance bicycling 200 miles a week, swimming laps and walking a couple of miles every evening. You wouldn't know that I was 68 then, 70 now and still trying to be active, alert. Please keep sharing information with us. Lynn aka CalfeeChick

rjoneslaw profile image
rjoneslaw in reply toMaggieT1

I didn't waterboard you these are questions anyone would ask about any study.

Given my career I think my questions were simple and friendly.

I'm glad you found relief.

MaggieT1 profile image
MaggieT1 in reply torjoneslaw

Well I don't know anything about your career and I sure don't need to feel as I'm being interrogated. You may have thought they were simple and friendly, I found them differently. It's all about

perception.

Kenu profile image
Kenu

Great News now we have to be patient as always with our government ok. Thanks for updating us to what’s going on 👍🙏🐾😉. Ken

Kellyj44 profile image
Kellyj44

Sounds good. I'm in desperate need of some of that medication!! Thank you so much for info. So very appreciative of this information.

Take care.

Jazzyinco profile image
Jazzyinco

Hey, Maggie long time no see you, have missed your perkiness😀 thank you soo much for the info. Can't wait till it s approved, until then, i gotta eats my Dark Chocolate Cani. 😉❤💜💙😍💪🙏 Have a good 1!

Iona60 profile image
Iona60

I'm eagerly awaiting the release!

MaggieT1 profile image
MaggieT1 in reply toIona60

Me too! I even asked them if I got first dibs because I was in the study and my Study RN's response was "what, are we in the 4th grade?" So I guess that means no!!

It was worth a shot 😎

Iona60 profile image
Iona60 in reply toMaggieT1

I always thought that people in a trial could choose to continue a med without stopping. It seems like the prudent thing to do.

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply toIona60

Absolutely, they already have the slow release in their system, now have to go back to pills every few hours 🙃🙃🙃😊😊

Iona60 profile image
Iona60 in reply toCalfeeChick

Seems messed up.

MaggieT1 profile image
MaggieT1 in reply toIona60

I wish I could have although the way they explained it was that we were in the last human trial and then it was going to the FDA

carolek572 profile image
carolek572CommunityAmbassador

Hey MaggieT1,

Could this help with your situation? I know that it is not a pain med per se but when I broke my leg recently, the spasms were not pleasant.

Keep smiling,

Carole :-D

MaggieT1 profile image
MaggieT1 in reply tocarolek572

You are always so positive and cheerful and I bet you light up every room you walk in to. I have a daughter-in-law that is like that but I think it's more because she walks in the light of the Lord and never lets any negativity nearby. I have actually seen people cross the street because they couldn't get close to her or my husband. Their Faith is so pure they almost glow. I have the feeling that I'm texting with someone just like them!?

In regards to your question, I take both zanaflex and diazepam for my muscle spasms and cramps now. I stagger them and it seems to work for me.

jackiesj profile image
jackiesj

maggie TY let us know if you see it out...cool ty for research...

bxrmom profile image
bxrmom

This is so great! I can't wait to hear more about it when it becomes available. I now take 10mg of Baclofen every 2 hours and 1mg Tizanidine in the morning and at 2mg night. This would be a big game changer! Thanks so much for sharing and participating in this study!

Jessie

Not what you're looking for?

You may also like...

Good news for a change.

Hello my ms friends. Results of my mri were no new lesions. Bad news is the hospital neglected to...
Doubled51 profile image

Good news for a change

Last week I got some really good news...my application for SSDI was approved. I'm very lucky it was...
Raingrrl profile image

YAY! Good News for a Change!

Just got the good news today that my short term disability has been approved! 😂😆 My 30 day...
Bygonelines profile image

Feeling very impaired from my meds. It's making me anxious.

Like many MS patients, I take a lot of meds. A lot. But I feel like I need all of them,...
CatsandCars profile image

Question for anyone with a morphine pump

Hi, I have a baclofen pump, and back when I first got it, my doctor mentioned the possibility of...
CatsandCars profile image

Moderation team

See all
johnMSAA profile image
johnMSAAPartner
DanaMSAA profile image
DanaMSAAPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.