started research med!

[daigs]

Hi everyone!
Well I took my first does of CK-2017357. So far so good, almost lol. It causes balance issues which is great because I already have that lol. Well I had my solid wood closet doors open and I lost my balance and landed head first into both doors causing them both to fly off the tracks, landing on my ass and left shoulder. Shoulder hurts, head kills, enough cushion on the butt to be fine lol. Yes, I'm joking about it. Took second dose this morning and feel like I have been drinking all day. Is anyone else one this? The first week you are actually on the drug, then it is 50/50. As my boyfriend jokes, I'm the cheapest drunk he has ever known lol. Could have been worse, could have needed stitches lol.
Hope everyone is doing great!

 

[momap53]

Glad that you got into a Trial!

Please be careful of falls! Use assistive devices! Breaks and soft tissue injuries really s..k!

 

[hjlindley]

I go Monday for visit 1. Plan on staying in the power chair after the first dose. At my height and weight (6',215 lbs) physics makes falling a real danger. But a 50/50 shot is great!

 

[ltbeauti]

Please keep us informed about the trial. And for goodness sake, be careful and remember you have to move slower. I have had to move slower and slower since my balance issues began. I now use a walker and scooter chair. And move like a sloth.

 

[pearshoot]

did part a it is a cheap drunk but theres no hangover. it did make me very gabby they started out having me take it in the morning but switched it to nights, which eliminated the problem, slept off the drunk. do you take it morning or night

 

[Nighthawk]

Thanks for the information on the CK- trial.
I am sorry you fell after trailing the medication. I hope your fall was not serious but, you have to be careful next time as falls are extremely dangerous to us, PALS.

At least, I can use the information you've made available to us when I try this CK- trial at JHU. I just didn't know it caused balance issues. I have already balance problems even without taking any drug so, go figure when I take this...LOL

 

[frankb]

I failed to qualify for the CK trial. That's the bad news. The good news was that my hand grip strength was too strong (although I have major weakness in my right arm). Go figure. Please keep us posted on the trial ! !

 

[hn7609]

I started the random portion of the trial yesterday. I reported no side effects to the Dr., however I am in the minority as she told me that everybody else was reporting lethargy & dizziness. The only time that I felt anything was after a couple of Vodka tonics last Saturday night. The effects of the alcohol were very intensified. I'm going to have a couple of cocktails this weekend, that should tell me if I am on the real thing or not.

Good luck with the trial.

 

[hjlindley]

Our snowfall kept me from driving to UVA so I am on the study drug until I go back this coming Monday . The side effects are limiting my ability to get around since it drops my blood pressure dangerously low. I have a brain fog that is pretty bad but I can tolerate the nausea but have not seen any improvement in strength or stamina . I'm going to stay in the trial but I hate the thought of being housebound for that long .

 

[pattyb]

My brother started it but after the third day he could hardly talk he needed help standing up and hard time walking. Also his hands were worse so he stopped taking it. He was back to where he was a few days later but it scared him. I so wish he could have been able to try this. I've heard a lot of good things about it. Good luck

 

[pearshoot]

pattyb did the clinic take him off the trial or was it his choice? did he take the pills in the morning or at night? taking them at night before going to bed it may be possible to sleep it off like a drunk. what he experienced sounds similiar to going on a three day pass in the army and consuming as much beer as possible.
that was in my 20's, now that i am 77 have learned a better

 

[tdamess]

this does not sound good

 

[hjlindley]

Well I made it to UVA yesterday. One look at my blood pressure and pulse rate and I had to leave the study. I am normally slightly hypotensive but this drug dropped it to 84/42 and a pulse rate of 45. That is not sufficient to profuse oxygen to the brain, much less the rest of me. Now I realize that hypotension is unusual in a 62-year-old, but mind is familial. At least this is now information cytogenetics has and I hope that will help others.

 

[jpsteeler99]

I am on the trial and felt "something" the first week and had minor side effects(dizzy). Now in the 4th week and I am feeling nothing at all so I am assuming I am on placebo.

 

[bleecher]

has your breath strength and power-hand strength test been any better since taking the medication?