The photo at the right was taken on Sunday. Kim and I are on the cliff walk near Portland Headlight, about a five minute drive from our house.Relapsing remitting MS patients usually take one of the FDA approved disease modifying treatments. But these treatments come with varying degrees of side effects and risks. As such, patients sometimes like to enjoy short periods when they don't take any disease modifying drugs at all. This is called a treatment holiday. It’s a little gift that they give to themselves for a few weeks or even months. But MS is a persistent disease, so it’s best to not leave it untreated for very long.
There are no FDA approved treatments for primary progressive multiple sclerosis, but that doesn’t mean I don’t try stuff anyway. Most recently I used intrathecal methotrexate for two years, but my last infusion was in February. Since that time I’ve not undergone any MS treatments. I don’t refer to this a treatment holiday, however. Holidays, or vacations, are for relatively short periods of time and have a defined end date. I’ve been without treatment for my MS for six months and counting, and I see no end in sight. I’m more inclined to call this a treatment drought.
This isn’t the only time I’ve been in a drought. My first one lasted a year and a half, back in 2004 and 2005. It happened again for about a year in 2009 and 2010. And there was nothing going on for parts of 2011 and 2012.
The goal with any treatment for PPMS is to slow down or stop the disease progression. I feel that this has only happened twice since my diagnosis in 2001 (I use the word feel because, unfortunately, assessment of disease progression is somewhat subjective for PPMS). The first time was during year one of the two-plus year Rituxan trial/debacle. The second time was during year one of my two-year intrathecal methotrexate treatment. I’m inclined to give credit to each of these drugs for my temporary plateaus, and then scratch my head as to why the treatments stopped working after a year. Of course, the other possibility is that my disease has its own natural ebb and flow, and I would have plateaued during those time periods even if I hadn’t been on those treatments. I don’t think so, but I can’t be sure.
As my friend Joe pointed out recently, there are psychological benefits associated with being on a treatment, even if its effectiveness is unclear. At least we are trying. At least there’s a chance that something amazing could happen. I wouldn’t mind a treatment holiday now and then, but these long periods of time between therapies aren’t good for me, emotionally or physically.
It’s like I am wandering in the desert. I ask myself, “When will it rain again? When will this drought end?”
Posts
Enjoy the break!
ReplyDeleteAndy
LDN has been my faithful companion since 2005. Of course, I can't prove it's slowing the progression but I had a few hints when I travelled and forgot it. After 3 days of no LDN I could see the difference. I don't forget it any more!
ReplyDeleteIt can't hurt (over 30 yrs have proven it harmless unless you are on opoids) and it's cheap even if it isn't covered by someone's insurance. And as your friend says, at least I'm doing something.
Andy, I am enjoying the ride, after all!
ReplyDeleteDaphne, I know a lot of people who benefit from LDN, and I'm glad it helps you. I tried it and it didn't help me.
when i was first dx, my neuro suggested i pick one of the CRABS - didn't really matter which one, he said - and made the point that no matter what happened, relapse or no, there was no way to know if it had anything to do with the drugs, that it could just as easily be the natural course of the disease. every medication i've used, they've told me the same thing, but that "you gotta do SOMETHING." of course, THEY aren't putting these chemicals into their bodies. i took a break from rebif, and saw no change. no matter which way you go, it's a crap shoot.
ReplyDeleteStephen,with drugs that have been through double-blinded, placebo-controlled trials, we do have some reason to think the benefits we might get from them are real, not imagined. but even then, we can't be sure. And for me, there are no double blinded placebo-controlled trial drugs. So with everything I take, like you said, there is no way to know if what happens next was because of the drug or if it would've happened anyway. What a wonderful medical strategy!
ReplyDeleteInteresting. My wife and granddaughter and I were in Portland on Saturday... port of call off a cruise ship.
ReplyDeleteCraig, yes, it gives me a warm fuzzy feeling to live in an area that people are apparently so interested in visiting. I have three posts that show off my neighborhood. They can be found here:
ReplyDeletehttp://www.enjoyingtheride.com/search/label/Neighboorhood%20Excursions
I stopped intrathecal methotrexate in September 2013, after five years of experimenting with different drugs. I'm a patient at the IMSMP. I did Rituxan and methotrexate together for two years. I'm altogether skeptical about methotrexate now. As you say, it hasn't been through a rigorous trial.
ReplyDeleteI think Timothy Vartanian and Kareem Rashid Rumah are doing thee most interesting MS research now. It won't help us, though.
http://www.partnersinresearch.org/common-foodborne-bacterial-trigger-ms-interview-timothy-vartanian-md/
Lisa, thanks for stopping by and commenting. I think stem cells will probably be the answer, someday. But how long will it take them to find a protocol that works for progressive MS? Who knows?
ReplyDeleteWell, Dr.Sadiq says stem cell treatments are 10 years out; my own neurologist at the IMSMP, Dr. Williams, says five years. But I think they are painting a rosy picture. I like your blog very much, and I wish you well.
ReplyDelete