I'm In the Study

[fightingms]

My MS Clinic called yesterday to let me know I am in the study....the ACT study. I go next month to find out which arm I was randomized into and I guess more info ........Kim

On a side note I was working out yesterday and did something I have never done before...after bridges,crunches,arm curls,leg raises...I started walking on my treadmill.

Now i usually only walk at 2 miles an hour...Well...I pushed the three button....got faster....then the 4 mile an hour button...and man next thing I knew I was jogging ...I have not jogged for 2 years...have not been able to. It only lasted for a minute and a half.....but hey....it made my day! .......Kim

[VirtuallyFine]

are you in Canada or the US?
what is the act study?

thanks....and good for you to be a guinea pig! I did it for a year and it was one of the most rewarding experiences I have ever had...best to you!

[fightingms]

Hi, I am in the U.S. The study is the Avonex and Combination trial study. Everyone gets Avonex,Everyone gets pills [ some placebo,some Methotrexate], and one arm of the study gets pulse steroids every two months.

It is a double blind placebo controlled study. I was very worried about it, now I am actually looking forward to it!!

What study were you involved in? ......Kim

[2gentle]

Kim,

I just wanted to say, "Congratulations!!" and a big THANK YOU! for doing this....I hope you can post to let us know how you're doing...take care,and U GO, KIM!!

[fightingms]

Thanks Diane.......I will Let everyone now how it goes. I guess it really is nothing new or exciting, as they have used the oral chemo Methotrexate off label for MS for quite some time....As they have used pulse steroids on an every month or 2, or 3, month basis.

This will be double blind...so the Neuro evaluating the progress will not know who is getting the steroids, and the Neuro's nor the patients will not know till the end who gets the placebo...or who gets the Methotrexate.

I hope it goes well and If I get the Methotrexate....I don't get any side effects I have read about. I don't see how if it is a double blind study, they could be giving us a dose that would give some of the side effects I have read about. ...Take Care.......Kim

[DIANE]

Hi Kim,

I wondered the same thing about the study....considering the side effects, I wondered exactly how they would *NOT* know...I hope all goes well for you,and the cheering you hear is some of the rest of us wishing you the best!

Thanks for the reply, and be well!

[BrendaH]

Good luck, Kim, with the study! You'rea brave girl, and your courage is certainly appreciated.

And I'm so jealous of you - I would love to be able to jog again, even if only for a few seconds! Not that I'm losing hope that it may come back some day, especially if I get to try LDN soon. Heard so much good stuff about it! Hope I'm not too disappointed...

Keep up the good work! I'll be thinking about you on Monday.

Hugs,

[fightingms]

Thanks Brenda.......I guess one minute isn't too bad huh. Actually it scared the poop out of me! Thought I was going to fall off my tread mill.

It was nice knowing I could actually do it though. I think my goal will be to gradually build up to the 4 mph button for one minute three times a week!!

Take care and thanks all for the cheers......Kim

[Jan_in_VA]

Hi Kim,

I go to meet with my neurologist and the study doctor tomorrow. They called me two weeks ago and asked me if I wanted to be in the trial. I have the test scheduled for Monday.

My PCP said she doesn't think it will hurt to be in the study, even if I get in the arm that gets the steroid every two months. I have had two IV Methylprednisolone series in the last year and also more than 6 weeks of oral prednisone, so I was concerned. She said that as long as they monitor the bone density, she has no problem with the steroid arm of the study. She said the Methotrexate might even help if I get that instead of the placebo. She is aware that it has been used for other autoimmune diseases.

Jan

[fightingms]

Hi Jan...Nice to hear of someone else in the study. My PCP said the same about the Methotrexate. He said he has several patients on it for arthritis and they have no problems with it.

I was concerned about the steroids because I had a terrible relapse in Nov. of 2002 and had IV Solu-Medrol 5 days in Nov.,3 days in Dec, 3 days in Jan, 3 days in Feb; then I started a course of 3 days every 3 months, and just finished this past October.

So I thought I had enough of the steroids for awhile. My bone density tests have been coming out OK, but still you worry...

I did not get randomized in the steroid group though. I found out Tuesday I am just in the Methotrexate/Placebo group. And as of this past weekend no problems with the study drugs.

I have to keep a diary of Avonex shots, study drugs,folic acid, and any alchohol I consume.


Let me know if you get in the study....Take care..........Kim

[jazzcat]

Hello all!

Kim and Jan, thanks for taking part in the study. Since I learned I have MS, one of the most striking things, in my opinion, is how people are willing to take part in studies that will benefit others and help find better treatments. So, a great big thank you. Please, keep us posted!

Here's wishing you well,
jazzy

[Jan_in_VA]

Hi All,

I will be in the study, but can't start until after May. I had asthmatic bronchitis in February and ended up in the hospital. I had a IV Methylprednisolone series for four days in the hospital and then oral prednisone for weeks after I left the hospital. My Neurologist said he wanted me off the steroids for at least two months before I start in the study.

Jan

[fightingms]

Thanks Jazzy. That was nice.

Good luck with the study Jan, Let us know how you do. I am still not having any problems with the Methotrexate/Placebo study drugs.
Take care.........Kim

[Shayk]

Hi all!

Saw my neuro yesterday for the first time since diagnosis and asked about being in the study. He advised me not to.

Given my age, he was concerned that I avoid IV steroids as long as possible because of the impact on bones. He actually also questioned me carefully about the type of calcium and Vitamin D I was taking. I actually thought that was remarkable for a neuro.

Now, maybe the good news, if I continue to do well, he thought I'd be on Avonex and Antegren at my next scheduled appointment, January 2005. They have an IV suite ready to go.

Sharon

[2gentle]

Sharon,
Wow, a neuro who asks about calcium! Even though you aren't in the study, at least you know you have a great neuro.

I wish ALL neuro's were more like yours, instead of being so quick to use steroids. While I do admit that steroids *can* aleviate some symptoms, and maybe shorten a relapse, they also can cause so much bone damage, etc, that it almost seems not worth it to use them.

Take care, and be as well as you can!