Dexamethasone or other steroid treatment for PLS?

[ShiftKicker]

Hello-
Looking to hear from others with primarily UMN symptoms if they've tried steroids, and if they experienced reduction in spasticity/increase in energy.

I'm still searching for something to help my fatigue. A year ago I had dental surgery and received 4 days' worth of dexamethasone for inflammation. I felt like a million bucks as a result. While I told any doctor I visited at the time (and I was seeing quite a few!) about my positive response to steroids, none really took it seriously. I have a doctor now who is interested in the possible benefits, but I wanted to know if anyone else had any experiences, good or bad that they might want to share.

There's some info floating around out there that indicates positive effects in some people, but I am concerned about potential side effects or set-backs in MND symptoms.

Many thanks-

Fiona

 

[billbell52]

I took steroids for about 2 weeks during the first year. They thought it might be some other disease. I also took 10 days of steroids for an ear problem. Both times it didn't help at all. After the PLS diagnosis my neuro said steroids have no benefit for a MND.

 

[laurel]

Fiona did you mention your response to steroids to your neurologist? CIDP which mimics ALS is often treated with IV steroids. Also did you get a trial of IVIG? When hubby was being diagnosed with CIDP is was given a trial of IVIG at VGH. He was responsive to it and that helped confirm his diagnosis.

 

[ShiftKicker]

Hi Laurel-
I mentioned it to anyone who was looking at me during the diagnostic search, thinking it might help in narrowing down what was wrong with me. No one seemed to think it was of note. I had no obvious lower motor symptoms at the time- just mild spasticity, fatigue and gait issues. No pain, no autonomic dysfunction.

I really appreciate your response. I think I will try the steroids anyhow. If I do gain benefit, perhaps it will cause my neurologist to re-examine. My thanks

 

[Skibike]

Hi Fiona,
After a back injury last May I was placed on Predizone for 10 days, at the end of the 10 days I felt wonderful my gait was much better I was able to jog again. Since then I have seen 2 neuros neither 1 was interested in starting me on steroids, I will push again at my next EMG in March.

 

[Nikki J]

Skibike for context could you please share your specific MND? Provisional pls, since you are still having emgs? Thanks

 

[Skibike]

Hi Nikki,
Currently I have been diagnosed with upper motor nuron disease, my Nuro. is leaning towards PLS, they àre unable to make a permanent diagnosis for 1 more year.

 

[Clearwater AL]

I've waited since 1 o'clock giving SkiBike a chance to reply to Nikki's question.

Fiona, if you have another or new doctor besides the Neuro who diagnosed you with PLS who recommends steroids... I'd avoid that doctor like the plague. The most common side affect of steroids... acne. As you may know... PLS is manifested at the very top of your head, your brain, the Primary Motor Cortex. Steroids don't get there. Spasticity is very complicated and there are more than one forms of spasticity. Maybe steroids works for one of the others but for PLS highly doubtful. Often our heads will tell us we feel better because we take something others tell us works. For a while.

PLS is progressive... it ain't gonna get better. Fatigue is part of it. Maybe your Neuro can lower your Baclofen dosage (if you take that) but trade off the return of Charlie Horses and cramps for it. Don't know if you're not happy with your Neuro who diagnosed you but... there are plenty of MND knowledgeable Neuros.

Best...

 

[Clearwater AL]

SkiBike, at your next Neuro visit you need to have him/her clarify the status of your diagnosis. You may not be in the window of MNDs yet. At this point I'd suggest you consider changing your Bio Interest designator. (You can ask your Neuro for his diagnostic code for your current status. There is someone here who can help you with that whatever it is.)

 

[TxRR]

You need to be more specific because there are different kinds of steroids. For example anabolic steroids, corticosteroids, estrogens and progestogens. Each has a different purpose. I am on anabolic steroids and can tell you it has no positive effect on Pls. It does increase muscle size but does nothing for gait or spasticity.

 

[Clearwater AL]

Thanks for adding the specifics and that it has no positive effect on PLS.. Just a question... why would you want larger muscles that are debilitated by spasticity?

I forgot to add a smiley after the word "acne'. My two Neuros (the first retired after nearly 40 years of practice) both really didn't support the benefit.

 

[ShiftKicker]

Hello-
Thanks for all the responses!

The specific steroid I was interested in was dexamethasone- with which I had a very positive response (felt like a million bucks!) before my actual MND diagnosis.

Al, I am so dog tired I am willing to put up with acne, or a beard, truth be told, should I also get an hour or two of actual energy. I would also put up with increased spasticity.

The approach, with regards to dexamethasone, is the anti-inflammatory effect it has.

thanks again

Fiona

 

[TxRR]

Thanks for adding the specifics and that it has no positive effect on PLS.. Just a question... why would you want larger muscles that are debilitated by spasticity?

I forgot to add a smiley after the word "acne'. My two Neuros (the first retired after nearly 40 years of practice) both really didn't support the benefit.

Well if I had a choice between large or small muscles I would pick large. The spasticity is a mute point. However, larger muscles doesn't mean more spasticity. It's all the same large or small. I'm a weightlifter so that's why I do it.