Wednesday, November 12, 2008

New MS Journey or New MS guinia Pig

Yup..I'm going to do it. I'm going to try a new drug.

Briefly, (for the benefit of the new MS bloggers out there that might have just recently tuned in) I have been off all drug therapies that are meant to slow the progression of the disease for a year now. My journey began with strong oral immune suppressants like Cellcept and Imuran. I was on Copaxone for a couple of years. I had no adverse reaction to it other than bothersome site reactions. I could have gone on taking it but my lesion load doubled in the last six months while on it. So, on to interferons. I hated them but gave it my best shot (pun not intended). My side effects were worse than the disease. I was miserable, but I kept trying different doses, different brands, animal and bacterial. After a year or so of that nightmare I decided to quit. The only other option I was given, if not pushed to try, was Tysabri. I just wanted a break from feeling miserable, and to everyone's surprise I have been doing very well without them. I have had my ups and downs but I have felt fairly stable.
I have had no new lesions during this time.I can't help but think that if I had been on a drug, the drug would have been credited with my success.

I've had a great year. I've taken three trips by myself to visit my children. I took a long road trip with my hubby. I've been active again in my interests. I have been painting, going out with friends and generally enjoying myself despite the MS.

Don't get me wrong. I still have MS. I do face the uncertainty of progressive disabilities. I think I've just adjusted to life with it better than in the past. I still have trouble with my vision. I still use an intermittent catheter. I have spasticity, tremors, TN, headaches, nerve pains, fatigue. I walk funny with a cane. I was listing to port all day yesterday. I'm either numb or in pain (never could understand how that is possible) and I get the HUG.

I was forced into unemployment and disability 6 years ago, so I don't have to push myself to keep a career or job. For me that means less cash flow and an abundance of time. I can crash, be slothful, or just basically go to hell and the only pressure I face is the one's I still tend to place upon myself. It would be a magnificent arrangement if not for the lack of legal tender and the plethora of unpredictable symptoms that come with my new daily life.

In a recent post I told you about my last neuro visit in which I merely asked about 4-AP. Unable to answer any questions about it, he wrote a script for it without any prompting almost daring me to try it.

I did my research with the help of Lisa at Brass and Ivory.
It looked promising to alleviate the nerve pain I experience with walking and general fatigue. I'm hoping it will help with all the twerpy paroxysmal symtoms.

I finally took the script to the compounding pharmacist in town. I was amazed! He knew nothing about 4-AP either, but spent more time with me than my neuro ever has, researching it and taking account of all the meds and supplements I take regularly. He wanted to look into it even further and vowed to call me back the next day with what he had learned. Amazing!
The only side effect that he was concerned about was the possibility of it raising my blood pressure. All in all it felt it was safe, ordered the needed chemicals and filled my prescription.
He gave me all the information including ammunition to use if necessary with my insurer, citing the prescription's Orphan Drug Status and FDA approval for use in MS and Spinal Cord Injuiries.

Today's the day. I'm staying put in the house. I took my first dose this morning. I'm monitoring my BP. When beginning any new promising drug therapy, I experience contradictory feelings about it. I'm hopefully excited that it will help with my daily quality of life and I'm leary of putting yet another man made chemical compound in my system. Yup, I feel like Alice.

Now if I could just get Huey Lewis out of my head....

Wish me luck!



Is it WRONG to "want a new that won't make me that doesn't cost too much". Crap. Now I'VE got Huey on my brain. Thanks!

But good luck with your drug and your personal experiment! I am a believer in individualized approaches and I also BELIEVE in the belief system of a patient. I've told my neuro before, "Well, I don't BELIEVE that will work and, since what I THINK about it is 50% of the efficacy, you'd better try harder to convince me or move on".

Great. NOW I've got that song lyric, "I believe I can fly...I believe I can touch the sky" rattling around in my noggin. Thanks for that, too? LOL

Linda D. in Seattle


Hey, I'm with Linda on the Huey Lewis. Now I've got music bouncing around in my head. Aargh.

I'm glad that you were able to make use of the research on 4-AP. I've read accounts of patients who think that it's making a huge difference in their lives.

I'll be looking forward to your updates and experiences. It'd be nice to have a drug which actually helps us with nerve function.

Please let us know how it goes.

Denver Refashionista said...

I will follow this with interest. I am not on any meds for now but I like to be informed. The problems you had with the other stuff is why I am in no rush to try anything. I hope this proves helpful.

otter said...

I wish you complete success with the new medication!
Oh, and thanks for getting Huey stuck in my head. I've got one to stick in your head - it's by Sugarland - Stand Back Up
I can't provide you with a link to the lyrics at the moment, but it's a great song, I'm sure you can google it. It's the theme song I keep in my head to help me deal with my feelings about my brother's MS.
Best of luck to you!