New to MS, already on 2nd DMT

[Sazed]

Hello.

First, I must say I've found these forums a valuable place to browse and "stalk" the past month or so. I'm glad I found this resource and community.

I'm a 37 year-old husband/father diagnosed with MS March of 2015. Started on Tecfidera right away in March and by August my arms and chest were turning bright red within 20 minutes of taking the meds and they had to take me off of it for fear of worsening med reaction.

I should be starting Plegridy in the next 1-3 weeks. Awaiting prior auth and delivery and then the q2 week poking begins. Not a big deal - we poked each other routinely in nursing school haha.

My main concern right now is my spasticity. It is especially bad in my legs. My neuro started me on Baclofen 10 mg at bedtime one month ago. They have increased it to 50 mg per day over 4 doses (20 mg at bedtime) and are considering more. I am also being scheduled to see a physiatrist.

Does spasticity typically go from nonexistent to terrible - all day long, bothersome at times, painful at times - all in one month ? One month ago my legs were fine. I had none of this. I was also just stopping Tecfidera. Does stopping a DMT make one more likely to have an exacerbation of some sort before starting the next med?

Thanks for any input and nice to meet you all.
Sazed

[KateA2]

Hi Sazed, glad you've found the board helpful!

I've not heard anything about Tecfidera "rebound" effect. It could be you were heading into an exascerbation? I would think going from no spasticity to lots is indicative of inflammation happening. When was your last MRI?

[Sazed]

last MRI

My last MRI was July 2014. Next is scheduled for December 2015.
Thanks.

[nes78]

baclofen never helped me. having had ms for more than 14 years there are way more meds now than when i was dg. 2.5 years ago i had hsct done because nothing was helping. northwestern in chicago. dr.burt.

[Temagami]

Please offer feedback on the Northwestern hsct rx.

[Imagine]

You're not alone

Really so sorry that you're going through this. My 1st DMD was rebif and it nearly sent me into liver failure. I've been on Copaxone the past 2 years with positive results

I take Baclofen 20 to 40 mg three times a day. Pardon my language, but spacicity sux! I have it in my legs and it comes and goes. The worst thing I can do is lay around (*** fatigue) without walking- that's when the spacicity is BAD. Move as much as you can. Baclofen is helpful for me. I started out with FIVE mg, and it knocked me out. Now, it's usually 20 mg. Although I still get sleepy, I'm getting used to it and can still function.

You're newly diagnosed, so you'll find things that work for you. Try suggestions here and check with your neurologist about medications. I will tell you that the half life of Baclofen is 5 hours @ most. So after 5 hours, it's not going to help with the spacicity. Ergo, that's why I take it 3 times a day. Talk to your Neurologist about that.

Please keep us posted and I hope that you feel better soon. Good Luck!

[COLOR="#008080"Shalom, Suzanne][/COLOR]

[Sazed]

Spasticity does suck! I agree. I've been doing Baclofen 4x a day now for a total of 65mg per day.

They wont bump me higher until I see the physiatrist, but they can't get me in until December. The Baclofen does help, just wish there was something better or longer lasting.

Hoping I will get more used to it and be able to just suck it up. It has been especially frustrating lately trying to work 12 hour shifts and hide this horrible symptom.

Thanks for your insight into the meds and spasticity.

Sazed

[randrk]

Hi

Hello.

First, I must say I've found these forums a valuable place to browse and "stalk" the past month or so. I'm glad I found this resource and community.

I'm a 37 year-old husband/father diagnosed with MS March of 2015. Started on Tecfidera right away in March and by August my arms and chest were turning bright red within 20 minutes of taking the meds and they had to take me off of it for fear of worsening med reaction.

I should be starting Plegridy in the next 1-3 weeks. Awaiting prior auth and delivery and then the q2 week poking begins. Not a big deal - we poked each other routinely in nursing school haha.

My main concern right now is my spasticity. It is especially bad in my legs. My neuro started me on Baclofen 10 mg at bedtime one month ago. They have increased it to 50 mg per day over 4 doses (20 mg at bedtime) and are considering more. I am also being scheduled to see a physiatrist.

Does spasticity typically go from nonexistent to terrible - all day long, bothersome at times, painful at times - all in one month ? One month ago my legs were fine. I had none of this. I was also just stopping Tecfidera. Does stopping a DMT make one more likely to have an exacerbation of some sort before starting the next med?

Thanks for any input and nice to meet you all.
Sazed

Hi. My name is Rand. I'm not a doctor or a health nut, but I was officially diagnosed with PPMS in 2012. A month ago I was so weak and fatigued I was sure I would be in a wheelchair in a matter of weeks. While surfing the net, without hope, I found Low Dose Naltrexone, researched it, and started Aug 31.

After three weeks, and a beer, I walked a block, bought an ice cream and sat for 15 min, then walked four blocks home, with a one min rest after three blocks. And the next day I wasn’t sore or stiff from the exercise.

Since then I still get stiff muscles, but they’re stronger. I have been having trouble sleeping, but that may be because of my environment (two teenage sons). I can now work physically for a couple of hours a day, now and again, which I haven’t done for a couple of months.

The regime I’m following now includes;
Modafinel – Two in the morning (down from three, started six months ago)
MM and ibuprofen for pain
Naltrexone – 2 ml before bed

I'm on a healthy, natural foods with supplements diet. I also use an electrical muscle stimulator (EMS), about the size of a transistor radio, most days, to exercise different muscles. I began physiotherapy three years ago, once every two weeks; last year, once a week, and now twice a week for massage and adjustments.

Anecdotal evidence suggests LDN works for some people but not for others, has minor side effects, and progression could stop for some people. If that happens and this is as good as it gets, I’m fine with that. But if not, I’m better now than I was and I’ll enjoy what I can, when I can.

If you decide to try LDN and a healthy diet, I suggest you research extensively, talk to your doc, and make up your own mind.

**edited by moderator in compliance with guideline 14**

[rdmc]

Hello.

First, I must say I've found these forums a valuable place to browse and "stalk" the past month or so. I'm glad I found this resource and community.

I'm a 37 year-old husband/father diagnosed with MS March of 2015. Started on Tecfidera right away in March and by August my arms and chest were turning bright red within 20 minutes of taking the meds and they had to take me off of it for fear of worsening med reaction.

I should be starting Plegridy in the next 1-3 weeks. Awaiting prior auth and delivery and then the q2 week poking begins. Not a big deal - we poked each other routinely in nursing school haha.

My main concern right now is my spasticity. It is especially bad in my legs. My neuro started me on Baclofen 10 mg at bedtime one month ago. They have increased it to 50 mg per day over 4 doses (20 mg at bedtime) and are considering more. I am also being scheduled to see a physiatrist.

Does spasticity typically go from nonexistent to terrible - all day long, bothersome at times, painful at times - all in one month ? One month ago my legs were fine. I had none of this. I was also just stopping Tecfidera. Does stopping a DMT make one more likely to have an exacerbation of some sort before starting the next med?

Thanks for any input and nice to meet you all.
Sazed

Sorry to read your spasticity is acting up.

My spasticity seemed to appear out of nowhere. One day I didn't have it (or didn't notice it) the next day it hit hard. I can even remember the circumstances of the first spasticity issues...I was in a grocery story, and all of a sudden my calves seemed so stiff, I thought I might have an achilles tendon problem.

I took the drug Zanaflex for many years. Zanaflex is an antispasticity med, and just like Baclofen it's main side effect can be drowsiness. When I took the Zanaflex, my neuro would prescribe it
in the lowest dosage (2 mg I think) and I'd take as needed during the day, according to the symptoms and according to how "alert" I had to be. One day the Zanaflex just seemed to quit working.

Switched to Baclofen, and I was allowed to tweak that dosage as well. 80 mgs seems to be
the max dosage per day, however, we have folks on the board that take higher. There again,
how the drowsiness affects you will have a huge impact on how much you take and when you
take it.

As far as spasticity getting worse suddenly, I've always found that spasticity was one of those
symptoms that could be tolerable in the AM and over the top in the afternoon. Things like hot weather, or overuse could ramp it up. Again I was allowed to tweak the dosage.

Going to a physiatrist is the right move. They specialize in issues like spasticity and are
very knowledgeable (at least mine have been.)

I eventually opted for a Baclofen pump but that was 10 years after diagnosis. Everybody's different, but looks like you're headed in the right direction by being referred to a physiatrist.

[bbelaine]

thought I'd share my experience with you. I was on Tec for 2 1/2 years. Five months into it, I started getting muscle spasticity in my arms and legs. Lasted for a week or so each time, but there was always something sore. I had to do stairs one at a time and getting up from a seat was a major production some times. In August, I had to come off the Tec because my WBC count was low and I came down with pneumonia twice. I've been pain free for over a month now after over two years of discomfort. Don't know if it was the Tec or just a coincidence. I didn't put them together because I'd been on it for a bit when the soreness started. Think about it every time I'm using stairs like a normal person. Hope you can find some relief too.

[Sazed]

Thank you

I really appreciate everyone's perspective and advice. This spasticity still perplexes me some days.

Counting down the days until I see the physiatrist. It seems major changes in weather (30 degrees or so in a 24 hour period) really seems to wreak havoc with the legs. We had frost the other morning and it was 71 F this afternoon. Not a typical November.

Again, thank you all for your advice. It is appreciated.

Sazed